Endometriosis: Facing the Battle Head-On

As the Seasons Change, So Do the Meds

2010-09-20T10:40:00.000-07:00

Life with endometriosis just keeps getting more and more interesting all the time. Not only do we have to take interest in the side effects of the "stuff" that we're putting in our body, but we have to also take interest in what happens when the "stuff" fails to work. Yes, interesting indeed.

As the combination of the Arimidex, Mirena IUD and progesterone failed to stop my pain and periods from announcing their arrival, my doctor and I sat down to discuss my treatment options. At the time he said that he would like to try a trial of Lupron. I promptly shot down the suggestion as I just can't take the risk of having any of the potential devastating side effects that may occur. Since my symptoms are mostly manageable and each successive surgery leaves more scar tissue, we agreed that we would put off surgery for as long as possible. I wasn't looking forward to recovery from that anyway. After I broached the topic of SERMS (selective estrogen receptor modulators) for reducing the production of estrogen, we agreed to a 6 week trial of one of them.

During this time, I developed the worst headaches of my life. I have really bad migraines, but this was the "be all and end all" of headaches. I could often be found with my hands pressing on my head to stop it from rolling off. I just assumed that the headaches were related to changes in hormones and changes in the weather, that I didn't really worry about it. Sure I was losing feeling in my arms at times and felt weak, but that's almost "normal" for me. At my 6 week check-in, the doctor feared that if I didn't already have a mini-stroke that I was high-risk for having a stroke if I remained on the SERMS. He also announced that the ultrasound had shown that I have pockets of blood pooling in my uterus, indicating the potential for adenomyosis, or basically endo inside the uterine lining. Due to the endometrial cancer, my doctor did a biopsy to make sure that it wasn't something other than "just blood". Luckily, no sign that the cancer cells are making a nice home in the organ, just on top of it. We changed my medications to a low dose of Danazol in hopes that it would stop the bleeding.

It's been 2 months of Danazol and my periods have still not stopped. In fact, I've had 4 in the last 60 days. I'm hoping that we'll increase the dose and that will be that, after all, in the past I was taking 800-900mgs of the med. I haven't had any too horrible side effects from the med, other than it setting off my fibromyalgia pretty badly.

I go back to the doctor early next week. It couldn't come any quicker as I'm going back to work in a few weeks and need to be at the top of my game. Doesn't anybody else feel like this is a giant roulette wheel that we constantly play? I, for one, am exhausted of the constant spinning.

I'm Not Picky or Fussy, I Have Food Sensitivities and Allergies

2010-03-17T06:36:00.000-07:00

I had sat down many, many months ago to write this blog post, but it has been made all that more important as of late. Why? My 5 month old daughter has been diagnosed with a severe milk allergy. Not exactly surprising to her father and I who are both lactose intolerant, but I'm sure it surprised a few people, especially those who looked down upon us for being concerned about it. See, prior to Chloe's birth we had decided that we would automatically start her on lactose free formula. My son couldn't tolerate lactose very well and had to be fed soy formula, so it seemed logical to us to start Chloe on lactose free formula right away, bringing our own with us to the hospital. While the nurses and doctors didn't outright tell us that we were "silly" for making this decision, we were sure made to feel that way when they all second-guessed us. It was not the greatest feeling in the world when first we were looked down upon for not breast-feeding and then for deciding to use the lactose-free formula. But it turned out that Chloe wouldn't take the lactose-free, so we started using the more common formula on the market.

As many of you know, Chloe quickly became very ill. The consultant pediatrician had passed us off, saying that she most likely inherited one of the digestive diseases from either one of us (I have Crohn's, and digestive diseases run in both of our families). We refused to accept the answers provided to us. In fact, it was the representative from Similac at a baby fair who suggested that it sounded like a milk allergy and recommended the hypo-allergenic formula. We switched over the following day.

Chloe was recently seen by a gastric specialist who, after running a series of GI tests, diagnosed her as having both severe reflux (causing the ulcers that caused the intestinal bleeding), and a severe milk allergy.

I have several food allergies and sensitivities myself. Red meat can cause me to be bedridden for up to 3 days. Onions cause airway restrictions. Tomatoes cause massive vomiting (there goes Italian food!). Wheat causes me to bloat and have intestinal issues. Dairy products also can cause me great pain.

Unfortunately, not everyone is accepting of our allergies. I have no idea why, I mean, if they were diagnosed with a severe bee-sting allergy would I send them out to work in a beehive? Yes, there is a lot I can't eat. No, I don't expect you to remember the list, nor do I expect you to go out of your way to prepare something just for me. In fact, with my allergies I would prefer to only eat what I, or someone close to me, has prepared. I am not being rude by refusing your freshly baked whatever, I am being kind to myself.

What I do expect, and I think this is pretty reasonable, is that I be allowed to bring my own food to dinner, etc. Yes, really, that's all folks. I know that I have been thought of as being difficult and picky for doing just this. I know I have been thought of as being rude. Often, I just won't get an invite that includes anything to do with food. This is quite hurtful to the many, many people who suffer food intolerances and allergies.

Research on the topic of women with endometriosis and allergies has shown that there is a strong relationship between them. Women with endometriosis are several times more likely to have food and environment allergies than women without the disease. This has been known for YEARS. However since few people actually know what this disease is, or how to say it, I wouldn't expect for them to know this. Even if they did, since they don't accept endo as a real disease, it becomes all that much more difficult to share these tidbits of info.

So what can you do to help? Be understanding when I refuse your plate of freshly baked cookies, it's not about watching my weight, it's about being kind to myself. Don't be upset if I do bring over my own food; I don't mean to be rude. If there is a group dinner at a restaurant, please consider letting me supply ideas; I know what I need to avoid. Please don't stop inviting us places, we like to have social engagements as well as any other person out there. Most of all, just be plain understanding of the situation; my health and that of my daughter's, is more important than any food that could possibly be offered to us.

The Mirena IUD, The Arimidex and The Norethindrone: The Trifecta of Medications

2010-01-16T08:25:00.001-08:00

It's been awhile since I've had a chance to give a blog post update for myself. It has now been a month since I had the Mirena IUD reinserted and have started back on the Arimidex and Norethindrone. I've also been taking my Cesamet (Nabilone) and Lyrica to help manage the pain. I haven't noticed that much of a difference as yet in my endometriosis symptoms, but then again, it has only been a month since starting treatment and I know that realistically it could take several months to see any differences, if they are to happen at all. I continue to bleed heavily at times, I have pain that brings me to my knees and has me in tears at times. The pain medications have helped to greatly reduce the severity of my pain. I am able to function, and for that I am grateful, especially with two small children.

I've decided to use this blog post to write a bit on my trifecta of treatments: The Mirena IUD, the Arimidex and the Norethindrone.

For those who have read my story so far, I've been on multiple treatments for endo since being diagnosed at 23. I've done countless birth control pills, a single shot of Depo-Provera, had two courses of Danazol treatment, and have decided against Lupron use. My options were pretty limited when my doctor suggested the Mirena IUD. I had the Mirena for a year when my symptoms started acting up again, namely heavy bleeding, pain and visible bleeding in my torso muscles. After doing much research, I brought the research on Arimidex (aromatase inhibitors) to my doctor who agreed to let me take the Arimidex. He also prescribed Norethindrone as a way of warding off some of the bad effects aromatase inhibitors can have on bone density. This treatment did help to manage my symptoms for me in the past, so it was an easy decision for me to restart this treatment program again now.

The Mirena IUD is a tiny plastic t-shaped intra-uterine device that releases a progesterone (levonogestrel) directly to the uterus. For a full description of the side effects see:http://www.rxlist.com/mirena-drug.htm. The Mirena is inserted at the OBGYN's office. It is only supposed to have minimal pain associated with having it inserted, however each person is different and several women, including myself, have found it painful. The Mirena has been shown in a few small studies to have a positive effect on helping relieve the pain symptoms associated with endometriosis. It is often only recommended for women who have had children as the uterus is already slightly enlarged afterwards, but it is also being used for women who have not bore children. It is supposed to remain effective for up to 5 years.

Arimidex is a medication that is often used to treat breast cancer. In about 2004, news broke that aromatase inhibitors had been found in a small study to help effectively treat the symptoms of endometriosis when other conventional treatments have failed. It is thought that some endometriosis cells might contain the enzyme aromatase which can fuel the production of estrogen, a very bad thing for women with endometriosis. You can read about the side effects of Arimidex here: http://www.rxlist.com/arimidex-drug.htm. The most noted side effect is the potential for bone density loss. The studies that have been completed on aromatase inhibitors have used norethindrone and Calcium and Vitamin D to offset this potential. More recent research has called into question the use of aromatase inhibitors, as a study has found that a handful of endometriosis types do not have aromatase enzymes in them. Do aromatase inhibitors hold promise for endo treatment? Further research is needed to answer this question. I find the initial studies interesting, and hold hope that my treatment with Arimidex helps.

Norethindrone is a progestagen, a form of progesterone. The hormone alone is often prescribed to help off-set the side effects of hormone-depleting drugs, or it might also be prescribed as a progesterone only birth control pill. Norethindrone might be used as a stand-alone treatment for the symptoms of endo as described here, although it is commonly used as an add-back therapy.

That is the Trifecta of my current endo treatment. I'll be sure to post more about the experience as I go through this part of the battle.

Would you ever try a medication that hasn't been proven to treat your condition? Under what circumstances would you consider it?

Happy New Year!

2010-01-01T12:04:00.000-08:00

Happy New Year everyone! I think of New Year's as a time to reflect on the past year and show gratitude for all that life has offered us in that time. After a lot of thought (ok, not so much as I'm reminded on a daily basis what I have to be grateful for), here is the list of 5 of what I consider the most important things I am grateful for this past year:

1. My amazing family. Yes, they may not always see things the same way as I, but they are there for me big time. This past spring, my father would drive an hour to pick me up, drive another 3hr round trip, and then drive an hour home, twice a week. Why on earth would anyone volunteer for this amount of driving? Because my father loves me and wanted to make sure I got what I needed, my IV drips. My mother also made this trip when her schedule permitted. They were planning a trip this summer, and because of my needing IV therapy and the way the pregnancy was going, they cancelled their trip. While I am saddened that they felt the need to do this, I am incredibly grateful, not only for this but for all the help they gave B and I to make it through the rough patches of the pregnancy. Not everyone has a family like this to rely on when the going gets tough, so for that I am incredibly grateful. I only hope that I can somehow repay them or pass the kindness on randomly one day. As for B, I am beyond words grateful to have him as a partner in my life. I can only imagine how stressful the pregnancy was for him, but he always was there to tell me not to worry, or to make me laugh.

2. My equally as amazing friends. Jeanne Endo has been there for me from the uncertain start to the equally as uncertain end. Jeanne would often spend hours with me on the phone after I returned from my many doctor appointments. She was my voice of reason at times when all reason seemed to fly out the window. Endochick, Jenny of AutoImmuneLife often checked in daily to see how I was doing and to provide a much needed lift of support. And of course I have all of my wonderful Facebook friends who would provide support and encouragement along the way.

3. I live in a country that has universal health care coverage. This has meant that my many illnesses haven't turned into financial ruin for myself or my family.

4. I have two wonderful children. Despite both being "medically complex", they are two vibrant individuals. J continues to grow and comes out with more surprising things each day. He has grown in so many ways this past year, I enjoy the person he is and is becoming. C's personality comes out more and more each day. I almost forgot what it was like when a child experiences their "first", such as the first smile and laugh. It's enough to melt the heart. And yet I am constantly reminded of just how lucky I am to have even been given the honor of raising these two souls.

5. Despite having some limitations on my abilities from my illnesses, I am still able to do many things.

The Return of the Endo Cells

2009-12-04T07:53:00.001-08:00

I've been a bad blogger. The demands of a medically complex newborn and an equally medically complex almost 6 year old have left me with little time to blog much less anything else other than quick Facebook status updates.

About two weeks post-partum, I got that familiar feeling, and no, it was nothing good. The intense stabbing, cramping and gnawing feelings left me not only breathless and speechless, but laying on the floor in a ball unable to move. Its made me nauseous and sick to my stomach. I was hoping that it was still my body adjusting to the end of the pregnancy. No such luck. It was the familiar pain of having endometriosis. The pain was located in the exact spots that I've had the pain before; around the kidney area in my back, the utero-sacral ligaments, and then just the lower pelvic area in general. To add insult to injury, you can also see the "bruising" the endo has left on my torso area thanks to the likelihood that it's endo cells in the muscle lining. Of course I don't have confirmation that it is the endo causing the bruising since that would require a biopsy of the torso area and not something that I would want to do, especially since they can't really do much other than medications for that area. But the bruising does get more intense with each cycle that I have.

I met with my RE (Reproductive Endocrinologist for those who aren't up on the shortenings of the medical professionals) for my 6 week post-partum check-up. The hemmorhagic cyst on my right ovary is still there, which leads him to believe that it was an endometrioma but we had to do my CA125 test to rule out ovarian cancer since I have the history of estrogen-based cancers. He also did a biopsy of the cervix as it appears that I have abnormal cells there which bled when touched. He also discovered a fibroid which he believes went undetected because it was hidden under the placenta. We finished the appointment with my favorite procedure of all (ok, not really), the endometrial biopsy. I got scheduled in the following week for the D&C (dilation & curetage) and to have a LEEP (Loop Electrosurgical Excision Procedure) done just to be on the sage side with the cervical cells.

So I had the D&C done, which is where they "scrape" out the uterine lining. This was done to remove any cancer cells that might be in the endometrial lining. I then had the LEEP done. It was right up there with the endometrial biopsy in terms of being my not so favorite procedures. Because I haven't had luck with birth control pills for treatment, we decided to go back on my trio of medications; the Mirena IUD, Arimidex (an aromatase inhibitor) and the norethindrone acetate (a progesterone only birth control pill). I've started back on the Arimidex and the norethindrone, and have an appointment on Tuesday to get it inserted.

I've also been back to my pain management doctor. He started me back on my Cesamet (nabilone) to help with the pain. Since adding it to the Lyrica that I take daily, I have been for the most part, pain free. It has been an amazing feeling. I know that the drugs only mask the pain, but it allows me to be able to function without fear of passing out from the pain or being in the bathroom all the time throwing up from the pain. I'm thankful for the break, however long it may last, since it has been so long that I haven't been anywhere close to pain free, and also because I have so many appointments for my son and daughter, as well as my son's birthday coming up in the near future.

And that is the update on the battle against my endo cells.

A Chloe Story

2009-11-17T11:30:00.000-08:00

*Warning to my friends with fertility issues, I will be putting a picture or two at the bottom of the post*

As last noted, Chloë had once again gone into the breech position so my doctor had again scheduled the version procedure (where they attempt to turn the baby manually) and a possible c-section. The

doctor was successful at turning her after a failed attempt (he was determined he wasn't going to do another c-section). Chloë was born October 1st at 10:30pm weighing an astonishing 6lbs, 10 ozs. The doctor was very shocked that she was this big since they had thought she would be about half of that. Chloë refused the lactose-free formula that we had bought, and started out on just regular formula.

Fast forward to two weeks later - Chloë started having diarrhea and blood in her stools. We made our first ER trip. We were referred to

a consultant pediatrician who diagnosed a milk allergy and based on our family history along with her symptoms, likely either Crohn's disease or IBS. At this point we switched her to Alimentum formula which is already broken down making it easier for her to digest. At our follow-up appointment, the pediatrician essentially dismissed our concerns saying that she was always going to have pain and bloody stools. I was so not impressed. At this point Chloë was having 20-30 bowel movements a day. You could literally feel the formula hit her stomach and come out the other end. The diagnosis of Crohn's was quite hard on me, I went through several periods of feeling guilty since I also have this invisible illness.

Chloë is now 6 weeks old, over the past week she has had more pain. About 4 days ago, she started having problems with passing bowel movements. She would strain until her eyes bulged and turned purple. She would scream out while passing any gas and her bowel movements decreased to 2-3 times a day. Yesterday she started to poop green and developed a rash. I made the 4hr round-trip to Sick Kids Hospital where we were seen right away. They gave her an ultrasound, and said that there were no blockages. Her bloodwork came out fine. The on-call gastro-enterologist determined that she has a reflux problem, explaining why she often chokes during and after feedings. The acid from this could be causing her pain. They thought that the rash could be a potential protein allergy, and if it doesn't clear up, to ask the family doc about it.

It's heartbreaking to see your child in pain and not be able to do anything about it. Luckily she has a mommy who understands.

Now meet Chloë Rae Kristin:

The Fertility Journey: Oh How Things Change

2009-09-30T07:38:00.000-07:00

What a difference 4 days makes when it comes to plans. I saw my OB earlier then my regular Thursday appointment this week because he managed to snag more OR time. Which is likely a good thing. I must admit, I love my OB. He takes one look at me and knows exactly how I'm feeling despite my cheery demeanor. He asked how I was coping with the pain and I honestly told that I wasn't coping, I was existing. Which is the truth, for the past few weeks I have been existing. I try everything to keep my mind from the pain, but the sharpness of it all forbids me from being able to avoid it completely. And yet, I am still adamant that if I could go through with it all again, if I knew it wouldn't seriously jeopardize my health again, I would do it in a heartbeat.

So anyway, we discussed the possibility of doing an elective induction, but when he went to check the positioning of the baby, he learned that she has once again decided to do things her way and is now laying transverse and there are some worries about the cord becoming wrapped in her body should she shift in an awkward way. We have decided to try to use his surgery time on Thursday to try to turn her, and if successful, induce labour right away. If not successful, I will end up with a c-section.

I'm thrilled to the core that there is once again a light at the end of the tunnel. I am worried about her size, but from here on out what will happen, will happen and I just must go with the flow. At least there is no chance of them cancelling this time around since I won't see him again prior to tomorrow's surgery! I will have to see the perinatologist (high-risk internist) though who has been helping me get through all of this as she has some concerns for my post-partum health. Mainly, we need to make sure that my thyroid levels go back to normal as I am at an increased risk of being diagnosed with Grave's Disease. We have to make sure that the fainting and blood pressure problems return to normal or else I will need to see a cardiologist. But aside from all of that, I'm concentrating on the fact that tomorrow I will be a second-time mommy to a beautiful, sweet little girl who will be showered with love to help her grow strong.

Fertility Journey: Changing Plans

2009-09-27T12:09:00.000-07:00

It's slightly ironic that my last post was a letter to my unborn daughter Chloe on the topic of challenges. I'm now facing one of my hardest challenges yet, making it through each moment.

September 26th was supposed to be the day that our little 3-some of a family made the transition to a 4-some. In an instant, that all changed. I went to the OB on Thursday and the results of the growth ultrasound that were told to me over the phone, were for a different patient. Chloe remains small. They have cancelled the c-section in favor of having me carry her as long as possible in hopes that she'll gain whatever weight she can before spontaneous labour occurs (which could be anytime - I'm going on 38 weeks).

It's bitter-sweet news. I know that it's best that she remains where she is and comes out as healthy as possible. At the same time, I'm also going through a very difficult time with the increase in pain. As sick as I have been this past summer with needing the 3x weekly IVs, I'm feeling much worse even now. I've been passing out an increasing number of times, unable to sleep, ... The pain is exhausting. The nerves in both of my legs are compressed, which makes me legs burn with pain down to my knees, and then my feet go numb. Not conducive to being able to walk to make sure that Jacob gets to the right school door in the morning.

I'm also having mixed feelings about the c-section that was supposed to have happened because it was an earlier opportunity to see exactly what's going on inside of me. Instead, assuming that I'm able to have a natural birth (which is a huge assumption), we'll have to wait until the 6 week post-delivery mark to get the endometrial biopsy done and then decide which treatment course to follow. The doctor will likely do a D&C (dilation and curettage) at that time to make sure all the cancer cells have been removed. Still, what's going on inside remains a giant fear.

In any case, I'm still hoping that labor occurs anytime in the near future, but at the same time, just hoping for a healthy little Chloe :)

Dear Chloe: A letter on challenges

2009-09-21T08:43:00.000-07:00

Dear Chloe,

One of the happiest days of my life was when I discovered that I was going to have another little jumping bean in my life. You were a very much wanted gift, so much so that your brother even put in a special order to Santa Claus for you to join our family. There were tears of happiness in everyone's eyes when we found out that you really were going to come to join in our life.

Chloe, you are such a dream come true for us all. We had thought that it wouldn't be likely for our family to expand due to mommy's health issues, only to find out that miracles DO come true. I want you to know that your mommy has fought very hard to make you the healthiest little bean possible. You have proven to everyone that you are a fighter. You are going to be born with enormous strength and to get through whatever life should throw at you. I only hope that your battles teach you more and more about yourself, that's the purpose behind the challenges that we shall meet. Every experience, every random meeting can teach you something about yourself and the world if you take the time to look deep inside of it.

Along your way, you will meet challenges. Dr. Seuss, a great children's author, in Oh, the Places You'll Go said "I know you'll hike far and face up to your challenges whatever they are". He also went on to say that you would encounter things that might scare you and make you not want to go on. I want to tell you that for those scary parts, I'll try to be there to hold your hand through them, whether physically or virtually. I want to tell you that you'll make it through them with ease. My greatest challenges have been my health. I've had more than my fair share of doctor's appointments and medical tests, along with diagnoses thrown at me. I hope that you never have to encounter any of these, but if you do, know that you will have an understanding mommy to stand right there beside you.

Your life is already filled with so much love and you haven't even arrived to the world yet. Know each and every day that you are loved. I hope that you never have to feel alone, but if you do, that you can remember that mommy always and will be forever right there in your heart to make you less alone.

Chloe, I love you with all my heart, now and forever, just as I love daddy and Jacob with all my heart.

Love,

Mommy.

The Death of a Super-Hero

2009-09-21T06:44:00.000-07:00

As most of you already know, Patrick Swayze died of cancer last week at the age of 57. I have spoken on occasion about my admiration for Randy Pausch, who during his battle with cancer continued to inspire and give hope to many others. Patrick Swayze is another one of my health battle heroes.

When Patrick was diagnosed with advanced pancreatic cancer, he was given mere months to live. A lot of people upon hearing this prognosis, would accept their fate and might sink into depression. Not Patrick. Patrick rallied his strength and determination to live well with this disease and went on to live another 20 months. This is an astonishing long time given the fate of most people who have a similar condition. Patrick worked hard filming a new tv series, The Beast, and nursing his spirit at his beautiful ranch home. Patrick was very connected to nature, which no doubt gave him some additional strength to get through his battle, and was an avid conservationist.

I really enjoyed reading Entertainment Weekly's article on Patrick's life. Specifically how they talk about his courage to battle his pain without pain-killers so that he could continue to work as "competently" as possible without the mind-fuzziness that painkillers can create. This takes a huge amount of courage, strength, energy... I can't even imagine. I know what my life is like without pain killers, it's not pleasant nor easy. When I came off all my pain meds to try to conceive, each day I felt like I was in a train-wreck. It was exhausting physically and mentally for me. Its not that I am addicted to pain meds, quite the opposite, I would rather not have to take them period. But it's that I need them in order to function. In order to be a good mother who can keep you with her children and provide for them, I need to take pain medications to have some quality of life and be able to provide a quality of life for the others I am responsible for. I couldn't imagine Patrick doing all that he did without taking pain medications. However, it does show what great lengths he went through to be able to provide for his fans, to be able to honor his contract with the television series he was filming, and likely, to provide him with something to focus on during his battle other than "just his battle".

The closing line in EW's article, a quote from Patrick himself: “Dance is a metaphor for life,” Swayze told EW in 2005. “You’re born. You peak. Your physical body goes downhill, but your spirit stays intact.” is absolutely beautiful. This quote embodies what I've felt about Patrick's battle since he shared with the world his diagnosis. He had a great spirit which soared no matter what he faced. I can only hope that wherever Patrick's spirit is now, that he is dancing and free of the pain he must have endured. Rest in Peace Patrick, your spirit will be missed here on earth as you join the legion of super-heroes.

The Fertility Journey: The End is in Sight

2009-09-16T08:27:00.000-07:00

I've been a bad blogger. Unfortunately I haven't had the time to post an update in quite awhile as to what's been going on with Baby Chloe and myself. I am now 36 weeks pregnant, the end is near.

We have stopped the 3x weekly IV treatments as I have been swelling in my legs quite noticeably. Since stopping the IV treatments, I've felt even more dizziness and have had a few fainting episodes.

Baby Chloe is doing well, although she is predicted to be a small baby, hopefully somewhere between 4-5lbs by the time birth comes around. I was told a few weeks ago that Chloe has "Intra-Uterine Growth Retardation", a term that is scary enough sounding to send the most calm of us parents-to-be into a frenzy. I had blamed myself, but I do know that I have taken every precaution to provide her with as good of "growing environment" as possible. Chloe has also decided to be much like her mommy and do things "ass-backwards", she wants to enter the world bum first. Given her small size and the fact that the cord is underneath of her, we have decided to try to turn her into a head first position and then do an immediate induction of labour, or else a c-section if not successful on Sept. 26. She will be 3 weeks early at this time, but as she isn't putting on weight and given my health, she is more than ready to come out to meet the world. They are preparing for the possibility of an NICU bed.

Yes, the end is in sight and it's going to be a beautiful ending for all of us :)

Invisible Illness Awareness Week

2009-09-15T10:46:00.000-07:00

This week is Invisible Illness Awareness Week. Unless you yourself or someone quite close to you has an "invisible" illness, you probably were unaware that this awareness week existed. Since you are reading my blog, you most likely know that I suffer from multiple chronic illnesses which are invisible. Although my illnesses do not leave me physically scarred, with the exception of the surgery scars, they do wreck havoc on my body.

If I can get across a single thing about an invisible illness it would be that even though you can't physically see what my illnesses are doing to me, that they have a serious impact on my life and are just as serious as the diseases that you might be able to visually detect. Over time I have collected quite a few labels for my illnesses: Endometriosis, Fibromyalgia, Inflammatory Bowel Disease, Rheumatoid Arthritis, Interstitial Cystitis, and even endometrial cancer. None of these illnesses will you be able to detect visually, except if I actually followed my rheumatologist's advice and used a cane to walk.

One thing that really gets to me is when people say "But you look fine/good/great". To me, my brain wants to take this comment out of context and says "Oh they are assuming that I'm not really suffering based on how I look". It's not that I don't appreciate the comment, it's that I've been down the road of people doubting my illnesses once too often to not wonder if this is what they are really thinking. When I go out, I go through great efforts to make myself look "good" and to put on the "happy face". I've learned how to pretend I'm well to the point of deserving an Oscar nomination. I believe in the "Look Good, Feel Better Program" that many of the hospitals run for their cancer patients. The premise is simple, if you look good and feel good about yourself for being able to look good, it can at least help to heal the spirit. If I displayed how I physically feel most days, I would not look well at all. Since society prefers to interact with healthy people, I attempt to play the role of the healthy, happy person and suppress what these illnesses are doing to me.

To honor National Invisible Illness Week, I'd like to share what some of these conditions are actually like for me when they flare up in my body. I'll try not to be too graphic, but give a glimpse as to what it might be like to live with these illnesses.

Endometriosis: I've lived with this one for 18 years now, but each and every time my endometriosis flares it reminds me of just how much I hate this disease. One myth about the disease is that it only causes pain during your menstrual cycle. I'd just like to say, at least in my experience, this is not so. The adhesions that have formed due to the rogue endometrial cells continue to pull and tighten on "things" throughout my cycle. I have pain during ovulation, which feels like sharp needle pin-pricks over my ovaries, and dull but gnawing cramping elsewhere. During my cycle my pain might be so bad as to make me violently ill or pass-out from the pain. Sometimes I curl up in the fetal position and just shake in pain. It's sharp, constant, gnawing, seizing, and hot pain. I have gastro-intestinal symptoms that flare up to the extreme during my cycle. This pain level could last as long as 9-14 days for me.

Fibromyalgia: I was diagnosed with this shortly after my son was born. When my fibromyalgia flares up, it really makes its presence known. I get pain that I describe as being from the roots of my hair down to the roots of my feet. It's sharp, and sometimes limits the range of motion that I have in my muscles. If someone were to even give me the lightest of touches in certain places (like my upper arms, my neck/back, etc) I could easily scream out in pain. I can remember once being sprayed by a garden hose with cold water and the resulting pain lasted 4 days. It felt like all my muscles were expanding at once, but painfully expanding to the point of being almost immobile. Even my feet are not immune to the effects of fibromyalgia, my feet often feel extremely hot during a flare-up, but they feel so hot that they actually feel "frozen" and yet all I want to do is stick them in an ice bath. With my fibromyalgia, I also get migraines which is quite common with fibro patients, as well as having sleep disturbances (well you try to sleep when all you want to do is take the skin off your body!).

Rheumatoid Arthritis: This is a newer diagnosis for me, which was determined after a bone density scan, an MRI, among other lab-work tests. I have been diagnosed with this illness in my hip. Shortly after my son was born I started to have serious problems with my hip "popping out of joint". This was so much more than just a muscle spasm. I can remember once being at the mall with my son, and going to get him into his car seat. My hip gave out and I collapsed but not before hitting and gashing my forehead on the side of the car door. I can walk without limping some days, but if this flare-up strikes, I am limping and people often wonder why since I'm so young. I wonder why since I'm so young as well.

For me, aside from dealing with the cancer, these illnesses are the ones that effect me the most regularly and tend to have the greatest impact on my quality of life. One of these illnesses alone is enough for a person to have to live with, but when you're diagnosed with multiple illnesses, which many chronically ill patients are, life seems to be a giant bag full of a variety of medicines.

Rejection from the System

2009-08-07T00:02:00.000-07:00

Remember this: You are back in grade school and you have finally worked up the nerve to approach your crush and to ask them on a date. You have feelings of nervous butterflies in your stomach and your hands are warm and clammy. When you hear those words slip from your mouth, you immediately known that you've blown your chance...

In a recent blog post, I talked about how we were courting a new family doctor as my current one is so far away from where we live and I really need someone to do the well baby-checks after the baby arrives, plus to manage any thing that might come along in our health. Yesterday was our big blind date. Prior to meeting with the doctor we had to complete paperwork that detailed our medical history including any diagnoses, surgeries, medications, etc. I had decided to be completely upfront with her and listed everything, against my better judgement.

Plain and simple, I was rejected. This doctor works out of a walk-in clinic which has a firm policy that it does not prescribe pain medications of any type to patients. The unfortunate reality in my life is that I have multiple pain-inducing illnesses. My pain management doctor has been the one who has been prescribing my pain meds in the past for all of these conditions. In any case, the GP stated that a family doctor should have the ability to prescribe for you any of the medications that you are taking, and with their policy on not prescribing pain medications, they wouldn't be able to live up to the ability of being able to prescribe anything that would help with my multiple pain conditions. I countered with "But I don't need you to prescribe them" andwas still refused to take me on as a new patient. I feel rejected and almost discriminated against for having the illnesses that I do have.

What is a person supposed to do when they can't control the fact that illness sometimes is a (major) part of life? Isn't preventative medicine, in the form of having someone to complete your yearly physicals, etc, supposed to keep the cost of our overall healthcare down since hopefully long-term disease could be squashed before it became such? Are we supposed to outright lie in order to be able to get a doctor who would be willing to take us on as patients?

These are the questions that plague my mind at 3am. In the meantime I guess it's time to keep going on blind dates to look for the one...

Birthday Wishes

2009-08-05T01:54:00.000-07:00

It's that time of year...again. My birthday. I've never been one to particularly enjoy having a birthday or to be the centre of attention at special gatherings. I'm more one that would escape to a deserted island if it meant that I didn't have to celebrate this day. However, one of the benefits of having children is that they remind you that "you simply have to celebrate mommy". Allright. You win. I will celebrate by writing my Birthday Wishes.

My first wish of the day: A pleasant home-care nurse. Today is an IV drip day. The IV port that was left in my right hand, I'm convinced just to make me unable to do anything at all, is a week old. Happy Birthday IV port. The only problem is that this particular type of IV port is only supposed to be left in for 4-5 days at a time. They are leaving it in because apparently no one can get a new line started on me. The nurse on Monday assured me that she wouldn't have a problem since she's been doing this 20-odd years and has only missed a handful of times. I just happened to be among those "one of a handfuls". She finally saw the point as to why the other nurse was asking for a mid-line, a more permanent IV port, to be put in. With any luck, I will get a nurse who can start a new line. If not, I might have to spend the day at the ER getting a new IV port put in.

My second wish: Sleep. My biological clock is preparing me for motherhood. At the latest, by 4am I have risen, even before the birds. While I do love a nice sunrise, which we haven't had a lot of due to the constant rain, I don't need to see it everyday. I can sleep for hour long stretches at a time, but can't seem to get any nice restful sleep. So that's what I'm also putting on the list.

My third wish: A new book. I'm looking for a new book that inspires me. It's been a while since I've picked up something that has touched my soul. I was inspired by Sidney Poirtier's book of letters to his great-granddaughter, but I'm looking for something more meaningful to me. The problem being, I just can't seem to think of anything off the top of my head that would be comparable to "the Last Lecture" or "The Peaceful Warrior" series. Hmmmm. I'll sit and scratch my head awhile longer on this one I guess. Recommendations welcome, as I still have a long 10 weeks of waiting here at home before Chloe arrives.

My fourth wish: For increased awareness of other people's suffering. Seriously, this world would be a much kinder, gentler place if we each remember that just because a person doesn't look hurt on the outside, they might be on the inside. I have "invisible chronic illnesses", I have mastered the ability to pretend all is well on the outside but can be a complete mess on the inside.

These wishes have been brought to you in no specific order other than what comes off the tops of my fingers as I type at 5am. I should be making the final wish of actually completing one of the many blog posts I've started about endometriosis and diet, but after all, it is my birthday....

"Courting" a New Family Doctor

2009-07-31T04:58:00.000-07:00

As many of you know, I moved last year to the point where my family doctor is now over an hour away. We are planning to move again shortly which will take me likely even further away, so I've decided that it is time that we find ourselves a new family doctor somewhat remotely even near to us. In Ontario, finding a new family doctor can be as elusive as the search for the Cardbury Caramilk mystery, in many of the "smaller" cities, it just doesn't happen. However, I will need someone to go to for the Well Baby checks when the baby arrives, as well as someone for just the everyday stuff.

We are being courted by a new family doctor. Our meet and greet date to determine if we will continue dating is set for next Thursday. I'm pretty nervous since we have to fill out a whole whack of paperwork prior to the appointment which includes listing all of your surgery dates (ummm, too many for the tiny box they provided), all of your diagnoses (again, too many for the space provided) as well as specialists you have seen, which I'm sure will run a few pages as well. From there, the doctor gets the decision as to whether we are candidates for his/her practice.

I like to think of myself as a GPs dream come true, I'm already connected with every type of health professional under the sun (although a cardiologist may be needed in my near future), and all I really need from him/her is to have someone to coordinate my care. Someone with whom the professionals in my life and in my children's life, can communicate. I'm growing more nervous by the day that this isn't going to happen. I guess we will know shortly enough as to whether we get to keep on dating!

Parenting and Illness: part 2

2009-07-29T19:14:00.001-07:00

I recently wrote on the topic of how chronic illness has affected my parenting, which you might want to read first: here. While having a simple illness can have an effect on our ability to be "fully present" for our children, for chronically ill people, this is something that they must navigate daily. Chronic illness has a profound effect on those who suffer from it, as well as the family, including children, who live with the person.

Being All That We Can Be

Society continues to exert a tremendous amount of pressure on us to be the best parents that we can be and to live up to some sort of society created standards. We are bombarded by media advertisements on products that are "sure to make our children happy". Many magazines publish articles on how to be more effective as a parent. No matter what is going on in our personal lives, we're expected to meet these standards or face the consequences of having an unhappy child. However, it's not quite that simple. Children do not require products to be bought in order to ensure their happiness, just as each individual will have their own way to parent their child. Child development books speak of the need for parents to be responsive, genuinely caring, provide the essential needs (food, water, shelter, clothing) and to be unconditional in the love that is demonstrated to their child. All children act up sometimes, and it is not up to society to judge us as parents and label us defective if our children have a meltdown in a public place. This certainly does not mean that we are horrible parents. If we give our children the basic needs, it provides the foundation for happiness to arise from within the individual.

Some of us knew going into our pregnancy that we were chronically ill, others may have developed their chronic illness after the birth of their children. One thing is certain; chronic illness does impact on our ability to be all that we can be for our children.

The Depression Factor

Many chronically ill patients will experience some degree of depression during their journey with illness. It's difficult to be happy and upbeat when you experience pain and other symptoms that interfere with your quality of life to a great degree. Who wouldn't develop situational depression when told that everything they are physically experiencing is in their heads? Or that all they need to do is live a little? Who wouldn't be frustrated with the constant shuttling back and forth between doctors? Or when the promise of a new treatment fails? It's so easy to fall into the world of negativity when we deal with chronic illness. But we must look for the positives. What has this experience offered to you? What opportunities for learning more about yourself and your strength has it opened up? What life lessons are to be learned from this experience?

Many parenting books talk about the effect that stress and depression have on our ability to parent and on our children themselves. For example, children themselves may develop anxiety and feelings of sadness in reaction to a parent's depression. One of the parenting programs called "Kids have Stress too!" talks directly about the correlation between parental stress and children's anxiety and stress levels. There could be many ways that the stress in transferred but the important thing is to realize that it is a possibility and to try to "buffer" the effects of your personal depression and stress from children. Easier said than done.

The Guilt Factor

How can a chronically ill person not feel guilt over the fact that they will likely never be viewed as "the perfect mom" in our society? Many parenting articles have been written about the myth of the perfect parent, and how this effects our own expectations of our self. We cling to an image of the perfect mom; caring, happy, and ready to drop everything at the instant that our child approaches us. We want to be able to do it all; work, housework, and keep the needs of our family met. And yet the more we strive, the more these ideals seem to slip away from our grasp and we start to feel the guilt over our limitations. The guilt factor can lead towards us disciplining our children in a different way, such as allowing them to do something they shouldn't because we have been ill. Or needing to buy them something extra special to make up for what we couldn't do. During my son's last month of school, I had the opportunity to go on a field trip with his class to the zoo. Unfortunately, I've been on modified bedrest due to pregnancy complications for quite some time. I was still wracked with guilt over not being able to go with him on this trip. Yes, the guilt factor is a big one for us chronically ill parents.

Our Children

Regardless if your illness started before or after you have had children, your family has had to adjust to having a "sick" member. Our children have seen us at our worst, and sometimes for a rare amount of time at our best. They have witnessed our lows, our frustrations, and our sadness over not being able to cure ourselves. When our children are young, such as in infancy and toddlerhood, they do not understand that the parent is ill and is working hard to get better. When they do reach the age to understand that we have an illness, such as at the beginning of school-age, children develop a natural fear that something bad might happen to us. It's completely natural for children of the age 4-6 to worry about one of their parents dying. When my son witnessed me passing out for the first time, he has thought that I was dead. It's a terrifying thought for any child and can induce a lot of anxiety. Children may also begin to take on more of a parental role in the house by performing duties that would have previously been done by the ill individual. Older children can begin to understand and process what it means to be ill. while they may still have their worries, the fears of losing the parent (unless they have a terminal illness) are generally lessened. They have adjusted to the "new normal" and may even begin to develop resentment towards the ill parent for not being able to do everything. This resentment phase can switch on/off through the adolescent years.

Coping Strategies

It's important to have some strategies for coping that can buffer the negative effects that chronic illness may have within the family. Here's a few ideas, in no specific order;

1) Talk about your illness. You might as well address the elephant in the room. The reality of the situation is that you are ill and have certain special needs. It's hard to make younger children understand that you may need to take some amount of time during the day to address your special needs. But attempting to explain your illness(es) in a way that is age-appropriate can help to reduce the worry that there is something really wrong with you. For endometriosis, I have told my 5 year old that "mommy's cells got mixed up roadmaps and have decided to stick to places that shouldn't be which is why mommy is so sick". One day when he is older and knows more about the body, I can slowly introduce him to a more direct explanation. However, the important point is to have an honest and open conversation about what is going on with your health. This also allows the child the opportunity to keep an on-going discussion about his or her concerns about the situation.

2) If depression is an issue for you, seek medical help. You do not have to go through this alone. There are millions of people who live with chronic pain daily. Perhaps you just need someone to talk to about the situation or maybe you might need the help of anti-depressants, the fact is that help is out there for you to use if you feel it might be beneficial.

3) Re-examine your expectations of your self. Do you expect to live up to that image of the ideal mother? What would an ideal mother with your specific illness(es) look like? What are the most important things to accomplish today? Tomorrow? Next week? What is realistic for you to be able to do? Are there people in your life who you can delegate out other responsibilities? What can you do with your children?

4) Entering the search for the Positive. What has your limitations taught you about yourself? Is there something that you can still do well despite your illness(es)? Is there any lesson that you have learned from the various experiences? What would you tell someone who asked what the easiest part of having your illness is?

5) Sometimes love really is all you need. Children tend to thrive in situations where they feel accepted and loved. It's natural to lose our cool at times, especially when we are not feeling well at all, but everything seems to melt away when we use the three little words "I love you". I firmly believe that one of the reasons that hugs and kisses can make boo-boo's better is because they are given with love and good intent. It might not take the pain away but hearing I love you and saying I love you can help to make the day brighter for all.

Parenting and Illness: Part 1

2009-07-28T22:59:00.000-07:00

My friend Jeanne of ChronicHealing.com has recently had a guest blogger, Stacy, writing on the priorities of life when it comes to illness. In this post Stacy writes of her family having to adjust to the reality of life with a chronically ill family member. Stacy's post really got me thinking of my own parenting when it comes to my son.

J. has never known a completely well me. My symptoms of endo had long pre-dated his arrival into this world, and fully complicated things after his arrival. He has seen the interior of doctors' offices way too much for any one person already in his young life. It's sad to admit that this has become his "normal".

I was diagnosed with stage 1A endometrial cancer 3 months after my precious miracle's arrival. While it was in its earliest stages, one can't help but think about the what-ifs that go along with this type of diagnosis, and those first days before I adjusted to this "new normal" were quite wrapped up in all of these thoughts. Realistically, I knew that there was very little chance of me becoming terminal, at least at this point, but these thoughts are what your brain seems to automatically jump to when you receive such a huge diagnosis. Not only did I have to consider my treatment choices along the lines of what I was willing to pursue (hysterectomy vs. no hysterectomy, etc), but now in making any decisions I had to also think of this completely dependent person. Every treatment decision and follow-up doctor's visit were always opportunities to second-guess whether what I was doing was "right" in a world where there are few "right" answers. J. has now been through 2 laparoscopic surgeries and countless D&Cs with me. And that's just the surgeries. He's seen me vomiting to the point where I couldn't leave the floor of the bathroom, witnessed me writhing in extreme pain and not able to comprehend why, and just generally struggling with whatever each new days throws my way. Even worse, lately he has witnessed me faint and became terrified I had died. He didn't tell me that he thought this, but told my parents later on, which to hear drove a stake through my heart. It's painful to think about the natural fears of a child being multiplied to a great degree in such a manner.

Throughout all of this, I have always tried my hardest to give J a "normal" childhood existence. I am unable to run around and be physically active with him, which is a void that my dad and now B. try to fill. I am unable to go camping with him as sleeping on an air mattress might mean days of pain for me afterwards. Again, I've entrusted my father into taking him camping.

I have a firm belief that it is the overall experiences a child has that goes into making them who they are. A child needs to experience unconditional love, respect and genuine emptahy in order to become an emotionally "stable" individual. These are gifts that we can give no matter our abilities. In fact, when you look at the topic of basic human needs; food, shelter, clothing, genuine love - these are things that we can give our children no matter how we are feeling.

J and I have been to countless drop-in playparks together, we've frequented the zoo (when I was able to) and we used to really enjoying going to the indoor amusement park together. We've seen Sesame Street Live, the Backyardigans and have gone to the movies on "dates" before. And the reaction that I get from taking him to these big things, pales in comparison to the reaction I get to playing something like Sorry, or Bingo on our living room table. Just a trip to Webkinz on the computer, or viewing the live webcams of animals on the computer can bring about "you're the best mommy in the world" phrases.

J has learned some lessons from my experiences that he will find of great value when he gets older. He has learned patience, that sometimes you must find ways to entertain yourself when the doctor is running 2.5 hours behind schedule. That sometimes you must wait up to 6 months or longer to get a special appointment. He has learned patience with other people, that sometimes we can't always meet our demands right away.

He has learned respect for other people's abilities of all types. He understands that "mommy can't do this" but he never criticizes. He is aware of what he can and cannot do because of his illness (epilepsy). He thinks nothing of it to see a person in a wheelchair or with an IV pole. To him, this is the "normal" and how we get better.

I've attempted to keep some level of normal in his life, and yet I still feel the guilt at times. I see other parents and how they are with their children, and I long to be that mom who is able to push their child for what seems like an eternity on the swing at the park. I long to be that mom who totes everything around in a back-pack and whips out things for an impromptu picnic at the park. I long that my children didn't have to know how to call 9-1-1, even if it is a vital skill. And yet, I wouldn't give up the opportunity for life lessons that my illnesses uniquely provide.

When asked "how do you deal with being in constant pain and having children?" or "How can you look after children when your own health is precarious?" I look deep for the answer but the answer is always the same "I just do". I do what needs to be done to make sure that their needs are met, everything beyond that is just icing on the cake.

The Fertility Journey: Dreaded Thursdays

2009-07-17T06:26:00.000-07:00

Thursdays have come to mean a day of dread for me. Not only do I get the pleasure of having the IV to treat my low sodium levels that are causing me to pass out, but I also get a non-stress test, get to be weighed to find out exactly how much I am gaining (gasp), and yes, get to speak with my high-risk doctor for results of testing.

This past Monday, I had to have a cortisol blood test done on me, and she decided to do my regular bloodwork at the same time. Cortisol is typically called the stress hormone, gee, just having the bloodwork done for some people can induce stress levels! Anyway, in pregnancy, too high of cortisol levels can be an indication of individuals who are likely to give birth pre-term. Cortisol is also associated with some infancy issues such as colic and anxiety.

I got the results of this test on dreaded Thursday. My cortisol levels are "extremely" high. I am to take it as easy as possible, but I have no idea how much easier you take it than laying around the house since I can't drive anywhere! High cortisol levels are also associated with Cushings Disease, which I have quite a few of the symptoms for. She will continue to monitor the situation after I give birth.

Dreaded Thursday continues with the results of my latest round of thyroid testing. My levels have slipped a bit lower, indicating a move towards what she initially thought: Graves. It isn't surprising. Many of us with endo have thyroid problems. So I have a script for some synthroid. She is hopeful that after the pregnancy the thyroid will return to normal functioning.

Dreaded Thursday continues with her poking (okay she was gently touching) my back which has been in excruciating pain for over a week now. The verdict is that I have torn a spinal muscle. Umm, is this possible when you don't do any physical activity?!?! I have a prescription for a TENS unit, as well as orders to seek out massage therapy services, both of which my extended insurance through work covers, luckily.

Dreaded Thursday, oh how I wish you didn't exist! Luckily I broke the scale in the labour and delivery unit and the nurse couldn't find another so I got away with no weighing in. See some people have some luck!

Dreaded Thursday has now changed to Fabulous Friday and I am going to be spending it watching movies and eating popcorn with my son. What a great way to spend a day that is too hot to do anything else! Not that I'm supposed to be doing anything else....

Chronic Pain and Addiction

2009-07-16T06:17:00.000-07:00

How original a title, but ironically the pain I am in at the moment is preventing me from being able to come up with something a little more attention grabbing. For the past two weeks, my pain levels have been through the roof, first with my fibromyalgia flare-up, for which I was finally given permission to start back on my Lyrica, and now I'm having severe back pain. When I say severe, I mean it took me 1hr and 45 minutes to get out of bed yesterday. So all this pain and some other things which I'll get to in a minute, have inspired me to write this blog post.

I have blogged on the topic of pain twice, once on coping with the emotional aspects of pain and then on the topic of coping with physical pain. Lately I've been thinking about another aspect of pain, the idea that we may become addicted and the role that plays in how individuals with chronic pain use their pain meds.

The Idea of Addiction

Let's face the truth here, many people who suffer from chronic pain regardless of source are given short-acting opiates to deal with the pain. Short-acting opiates can be anything from Tylenol 2's to Percocets, Vicodin, etc. Unfortunately for us, there has been a huge increase in the number of reports of abuse of these medications. Perhaps it's because pain is a subjective thing. When you report pain to your doctor, they can't tell visibly that the pain is there, they can't deny that you are feeling pain. Thus it would be easy for a person seeking pain meds to go to a doctor and "pretend" the pain symptoms are there just to get access to the drugs. Not to mention that drugs such as percocet, oxycodone, and Vicodin have a high retail value on the streets. It's much easier to hide this type of addiction than it would be to hide an addiction to heroin or cocaine.

Due to the rise in abuse, doctors have become more aware of the dangers in prescribing these meds. Specialists tend to not want to prescribe pain meds as they usually don't see you on a regular basis to keep tabs on you. I had one doctor tell me that it would unethical of him to prescribe me anything for my pain but that he would send the recommendation back to my family doctor. But what if your GP didn't agree with the specialist's recommendation and denied it all together? It's a real problem.

A Chronic Pain Patient's Nightmare: Prescription Addiction Assessment

Prescription addicts are a chronic pain patient's worst nightmare. How so you ask? Well due to the individuals who abuse prescription narcotics, many individuals with legitimate needs for pain medication, cannot have access to the type and/or amount they may require.

An addiction is a psychological issue where the person is dependent upon a substance for their day-to-day functioning. Sometimes it's a mild addiction where the person can function and think about other things other than how to get their needs met. However, in the throes of addiction, individuals are motivated to find how and when their next source of meeting their needs will be. This becomes drug seeking behaviour. Doctors have come up with a list of common drug seeking behaviours which is often used in determining whether our complaints are legit or whether we are just looking to "score". This list has been put into the form of a Risk Assessment which the doctors can use to determine if we might be "drug seeking".

We can fit the profile of those who abuse prescription drugs. We complain of constant pain, and many health practitioners still believe that we are exaggerating. This is most likely due to the myth that us endo patients are nothing more than people who cannot handle normal menstrual cramps. Many of us who have been "around the block" long enough, know which prescription drugs are effective for us and we ask for them by name. This is listed as one of the red-flags of a drug-seeker. We are penalized for knowing too much. And many of us, despite our illnesses are still able to work, which means that we have the means to feed our addiction. Let me give you a personal example of how this has affected me:

I have been taking prescription narcotics on and off since I was in my mid-teens. I am allergic to NSAIDs (non-steroidal anti-inflammatories) which is the first line of pain meds that many doctors would prefer to use. So when a doctor offers me NSAIDs I will politely turn them down and say that I'm allergic to them, which is all too easy for an addict to say. It would be unethical for a doctor to prescribe you a medication for which you are allergic, so there is really no way of proving this statement. As I have taken so many narcotics, I tend to know what works best for me. I don't believe that this is drug-seeking a particular drug, but I think that it's useful knowledge that can save time and frustration over prescriptions that don't work. Unfortunately, when I say by name what works, I'm often met with resistance. Tylenol 2's or 3's are essentially useless to me, especially after being on and off oxycodone (percocet) for the past several years and having been on a high-dose fentanyl patch. Thus, when I go to the ER with pain complaints, and shoot down their first suggestion for either Naproxyn or Toradol, it's no wonder that I've been flagged as a potential drug seeker. Yet all I want, all anyone wants, is relief to their pain.

Addiction VS Tolerance

As said above, the addict is motivated to seek drugs based upon their psychological need. This is quite different than a naturally occurring physical dependency or the increase in pain medication tolerance levels that many of us chronic pain patients experience. Research has informed us that if you take any medication long enough, your body can become physically dependent upon it. I have experienced this first hand with my two year usage of fentanyl. This is a very strong drug that is given quite a bit to cancer patients. I had switched pain doctors and needed to come off the fentanyl patch. For two weeks, all I could do was lay in bed, shake and pace. I honestly didn't know whether I was going to make it through. That is the physical addiction. With short acting pain meds, research has also informed us that we tend to become used to the drug and require more of it in order to get the same amount of relief. This is what is known as tolerance. And it is naturally occurring all the time.

Chronic Pain Management in the Face of Addiction

As mentioned, many doctors have now become increasingly aware of the problem of prescription drug abuse and thus have limited their number of prescriptions that they give out. As a result, many chronic pain patients tend towards under-treating their chronic pain. The problem with this is that those pain signals travel through the Central Nervous System and over time, build up more and more pain receptors to match the number of pain signals. When the CNS is flooded with pain receptors, there is the likelihood that we are going to be sensitive to non-painful stimuli as a result of a hyper-stimulated CNS. Research has shown that chronic pain patients are less likely to become addicted to pain meds, as they try to conserve whatever pain meds they have left over in fears that they will not be able to get more for when the pain is even more severe.

I have experienced this in the past two weeks with my back, which I just found out is a torn spinal muscle. My doctor gave me a limited number of percocets, so I would use them scarcely. Even though the pain would be a 9/10, tears streaming down my face as I vomited from the pain, I would be thinking, "what if the pain gets worse and I need them more then?". So I under-treated my own pain. This is far from ideal pain management.

What really gets me is that I was approached by a lady who does services for people within their homes. Upon mentioning her pain to her customer, the customer, rather than offering her a tip offered her a bunch of pain meds. I think that this type of behaviour is a real problem and doesn't do anything to help out the image of those who are trying to access pain control through legitimate ways.

So what can we do?

We need to communicate with our healthcare team as openly and honestly as possible. Keeping a pain journal is a great way of showing the doctors that you take your pain seriously. For pain journals please see my post on coping with pain. As well, don't be quick to rule out your doctor's recommendations for alternative therapies. If you shoot down the doctors ideas before even giving them consideration, this can signal to the doctor that you aren't interested in trying all that you can do to relieve your pain. Consider going to pain management, sometimes it's best to go to the specialists who deal with what you have to put up with every day. Pain clinics exist for chronic pain patients to use. My posts on coping with emotional and physical aspects of pain have some good ideas for pain management as well.

Endometriosis and Sexual Identity

2009-07-14T09:36:00.000-07:00

For my non-endometriosis friends who are going to read this, this is a glimpse into what it can be like for us women living with the disease which is intrinsically linked to our reproductive organs, and through that back to our sexual identity. As you may not be aware, one of the symptoms of endometriosis is painful sex. It could be pain during the arousal stage, during the act of penetration, or anything afterwards. The sad thing is, there is not too much written on this taboo subject as it's not "kosher" to describe our sex lives. However, our physical intimacy habits are often linked to our self concept, our self esteem and how we can express ourselves. If you're still brave enough to be reading this, kudos to you.

A Look at Our Human Needs

In looking at Maslow's Hierarchy of Human Needs we can see that under one of the basic needs we have in this life is sex. If we move up his ladder of human needs, we can also see that under psychological needs we have a need for intimacy. In a heterosexual relationship (I can't speak for homosexual relationships as I haven't studied them in depth), our needs for sex and intimacy are often combined into one. I have read quite a bit on how the male gender tends to express intimacy through physical actions (hugging, caressing, making love, etc), whereas females are more open to the verbal as well as the physical. I include Maslow's human needs as when we do not have these needs met, we are at risk of having a part of our self concept under-developed.

The Implications of having Endo on Sexual Relationships

The common place problem with women who have endometriosis is that the physical expression of love might be a source of pain. The physical pain of sex has implications for both partners. Several women in my support group have commented that the pain leads them to try to avoid sexual relations with their partners, and sometimes that their partners give up trying to initiate sex as they don't want to cause them pain. In my support group, I have met many women who fear the thought of making love, as they know afterwards that they can be in pain for days. It's hard to feel like a sexual being when you have to take a pain pill just to have sex or because you had sex. When the physical expression of two individuals love for one another is no longer possible, for some people it can feel like their partner is pulling away from them. When a man who expresses his love in a physical manner, is no longer able to express it, communication can breakdown between the couple and lead towards one or both individuals feeling "unloved".

For women with endo, it can be difficult for us to see that we are sexual beings. We can come to resent our reproductive organs for what they are putting us through. We might feel that we are "less of a woman" due to our disease, our inability to conceive and carry to term, surgeries that we may have had to remove ovaries or even having complete hysterectomies. Many of the medications that we try in order to alleviate our symptoms can not only lead towards a lowered libido but can also lead towards weight gain. Quite a few of the ladies in my support group have commented on how the weight gain has caused them to feel unattractive. Also, the physical pain itself can make us feel unattractive, and it is hard to "be in the mood" when you are in a lot of pain. A few women have also commented on how they fear that their partners may seek physical comfort in other places due to what they lack from us in a relationship. It's not a far stretch for sexual problems to lead towards communication problems and issues of insecurity in the relationship.

A Perspective on Dealing with Physical Intimacy

Sometimes we need to shift our perspective on exactly what physical intimacy is. Yes, we do tend to think automatically of sexual intercourse when we talk of intimacy, however that is only a small part. For partners who want to show their affection physically, gentle caresses even to the cheek can communicate feelings of love, as can being held close. Research on the power of touch have proven that humans require physical touch and that it may be a source of healing from a variety of illnesses, from cancer to chronic pain. Massage can communicate our deepest emotions which words can fail to describe.

On the Topic of Intercourse

To help with sexual intercourse, it is necessary to try to remain as relaxed as possible, and to think to yourself that this experience is going to be better than the last one. If we focus on how much it has hurt us in the past, it will tense up the muscles and make this experience an unpleasant one. It's always beneficial to start with a clean slate. You might also want to keep track of when you are in the most pain, both with positions and timing of the month. It's possible that certain positions won't hurt during a certain time, but might be more painful at other times. This is normal as the endo can cause internal swelling and the added pressure and movement can set off more pain. It might be helpful to invest in a good sexual manual to help with discovering new positions that might not be as painful as others.

The most important key to coping with this is communication. Let your partner know how you feel, find alternative ways of expressing your love, and keep experimenting with different ways of being with one another. Remember that this disease is only a part of you and does not define you, it does not make you less of a woman in any way, shape or form.

On the Topic of Strength, Courage and Super-Heroes

2009-07-08T09:29:00.000-07:00

This post is going to be a bit different than my usual posts in that I'm not going to be focusing solely on my health or on any particular illness. I really want to talk about strength and courage. The inspiration that came to write this post is based upon recent conversation with my good dear friend Jeanne Endo of the blog Chronic Healing. If you haven't had the opportunity to read her blog, I highly recommend it as she speaks not only of illness but of the power of staying positive, something that is very difficult for us who are chronically ill.

Another source of inspiration to write this blog has lately been my support group: Goddesses of Endometriosis, which has just reached 1,000+ members. I regularly receive notes that tell me that I am a source of inspiration to people, that they admire my incredible strength and determination to get through even the most darkest places of my life.

The last inspiration for me to write this particular piece came to me as I was watching the Michael Jackson memorial yesterday. I got to thinking, if I pass on, what will people say about me? Will they recognize the contributions that I have tried to make in attempting to help people? What kind of legacy will I leave for my children? Will my children know of the difference that I have made in someone's life?

I find it difficult to respond to the letters I get that talk about my strength. I do not really recognize the strength I have within myself, especially when I struggle just to make it through each day. How can I be a source of strength when it takes everything within me just to get my feet onto the floor at times? I think that the strength that I draw upon is the determination to live each day well. To me living each day well means making a footprint or planting a seed somewhere along the way which is going to help people. After all, we each need seeds of hope that will one day blossom into beautiful flowers. If I can make a difference, however small, in someone's life, than I have lived well that day. I strive for this each and every day, to make a difference. Do I succeed? I'm often left wondering the answer to that question. Sometimes I know through personal contact with individuals that I have made a difference, other days it is just the hope that lives within me that my words have reached out to touch someone.

I'm going to talk about my sources of inspiration here. These are sources that I find to be incredibly touching and from where I draw my courage to face each day. For anyone who knows me well enough, they will know that I am a reader. I constantly have 4-5 books on the go.

My first source of inspiration comes from Mitch Albom's "Tuesdays with Morrie". For those who haven't read the book, essentially, it is about a special friendship that has developed between a terminally ill professor and his college student. Morrie teaches his student very important life lessons on a variety of topics like marriage, culture, family, emotions, etc. I'm going to share a quote from the book:

"Mitch, you asked about caring for people I don't even know. But can I tell you the thing I'm learning most with this disease?"

"What's that?"

"The most important thing in life is to learn how to give out love and let it come in".

What a beautiful passage. Even now typing it out I have tears misting in my eyes. But the words ring true. Each one of us has a gift inside of us, a gift that we can open up and give to others at any time we choose. It's a gift of gratitude, of hope, of friendship and most importantly of love. We need to feel love. It's one of Maslow's points on the hierarchy of human needs, each individual needs to have a sense of feeling loved. A quote from Moulin Rouge is "It is better to have loved and lost than to have never loved at all". - Originally said by Lord Alfred Tennyson. I like to think that in my work with my support group and with the people I randonly meet with chronic illness, that I give out the seeds of love. I may not say it as often as I should to the people I am close to, but I have love for each and every one of them in a certain way. Each person I have met has left a footprint and a seed in my heart.

The second source of inspiration for me comes from a book I know not many people have read. I stumbled upon it rather by "accident" one day, but I think it was more due to fate that it popped out at me as a book on sale at Chapters. It is called "We are all the Same" by Jim Wooten. For those of you who haven't read this tear-jerker, it is about a woman, Gail Johnson - founder of a hospice for AIDS patients in Africa, who becomes a mother to an infant child born into poverty and afflicted by AIDS. Obviously, the story touched me in several ways which I won't go into right now, but the main point I want to make about this beautiful and touching relationship between Nkosi and his newfound mother, is that she made a difference in the lives of many. She defied the race barriers and worked to defeat the myths of HIV/AIDS that is so prevalent in South Africa during a time when it was a very politically charged topic to bring true awareness about this disease. Gail never stopped trying to bring awareness despite the adversity she faced. Nkosi defied the odds of survival and lived for several wonderful years with his mother, and as I see it, her strength and courage to keep him alive and well is what encouraged him to live longer. Gail Johnson is a true super-hero in my books.

Last but not at all least, is a very well known gentleman who epitomizes the words strength and courage: Randy Pausch. Although he will never know it, Randy's words have left an unmistakable footprint in my life. Randy knew that he was facing a terminal illness, but used his remaining time to the fullest. Leaving a book, Last Lecture, as a legacy for his children. For those of you unfamiliar with this book, I either encourage you to read it, or you can watch the movie on youtube here: http://www.youtube.com/watch?v=ji5_MqicxSo. It is an amazing piece of work. Randy has left his children with all of the life lessons that he wanted them to know, but will never have the chance to teach them in person when the time comes. Some of you will know that I have written letters to Jacob while I was pregnant with him and throughout his young years. I have many things that I want to share with him. I figure that this is one of the greatest gifts that I can give to him should something happen. Not that I plan on my death as being imminent, but we never know when we shall pass on. Randy Pausch, you are one of my heroes and likely a guardian angel to us all, reminding us to live well each day.

These are my super-heroes. People who I believe embody the words strength and courage. I do not see myself in the same class as these people. One day I would hope to be remembered as such, but it still feels to me as though there is a lot of work to be done. I want to do more, I want to reach out to more people, in short I want to make a difference.

Will my children remember me with the same fondness as I have for these individuals? I sure hope so.

Endo and CMP

2009-07-03T12:04:00.000-07:00

I'm in desperate need of a distraction as I sit here in pain due to a severe fibromyalgia flare-up. So I've decided to write today on the topic of Chronic Myofasical Pain (CMP) and it's connection to endo. If anyone reading this also belongs to my support group, you will know that I often speak of the possibility of people with chronic pain issues to have a diagnosis of CMP, but I don't believe that many people outside the circle who have received this diagnosis understand what it is and what it means. I hope this helps!

CMP: An Introduction Using an Analogy

Chronic Myofascial Pain (CMP) can best be described by using the following analogy, otherwise the explanation can get too technical and bogged down in details to make much sense. Picture a piece of raw chicken breast. The actual chicken breast itself is your muscle, but the thin clear stuff on the surface is what is referred to as the myofascia. The myofascia line all of our organs, separating them from the bone but holding them in place. It often has a stretchy nature to it as the muscle must have some mobility in order to stretch and contract as it should. In CMP what happens is that the myofascia becomes stuck between the muscle and the bone, creating tension and eventually effecting the range of motion that that particular muscle will experience. You have no doubt heard of people talking about having a knot in their muscle, which is actually the formation of a taut band of myofascia that has developed a contraction knot, or what is technically known as a trigger point.

The Link Between Trigger Points and Endometriosis

Some research suggests that trigger points develop easier in damaged tissues. Women with endometriosis tend to have tissue damage in the pelvic/abdominal areas, especially as the disease causes the tissues to become inflamed and the cells to start bleeding. When we curl up in the fetal position due to the pain, we are also putting pressure on certain muscle groups. This type of overuse can also lead towards the development of trigger points.

Trigger Points: A Pain in the $!$

Once the myofascia has developed a trigger point, the muscle may become stuck and then have a limited range of motion. The trigger point may cause the muscle to be locked in a state of contraction or expansion, limiting the range of mobility that the muscle has. The surrounding muscles then try to compensate, but with the extra pressure on them to do the work of the initial muscle, it too may eventually start to develop a trigger point. In this manner, the pain may cascade down throughout the body as each muscle group slowly becomes effected. I often have trigger points develop in my shoulders and neck, which can be a trigger for my migraines. It can also trigger me to have lower back pain. The trigger points throughout my pelvic and abdomen also create a lot of pain in that area and send pain signals through my lower back and down through my legs.

CMP is NOT Fibromyalgia

While CMP often goes along with those who have fibromyalgia, they are not part of the same condition. With fibromyalgia a person develops tender spots; spots that when touched even sometimes with the lightest amount of pressure can send abnormal amounts of pain rocketing through the body. However, the pain tends to stay localized to that particular point. Fibro pain also tends to be widespread throughout the body, affecting both sides.

With CMP, activation of the trigger point often sends shooting pain throughout the body's muscle groups. You might have trigger points only in one part of your body, even though the corresponding muscle groups might be affected by the radiated pain. However, this is not the same as with fibromyalgia.

How do they Treat CMP?

Relief of the trigger points can be achieved in a few different ways. Massage therapy, although it might be painful as the muscle groups learn to relax again, can help to reduce and relieve the trigger point contractions. There are a number of Self-Help Trigger Point manuals available at the bookstore which can show you how to do self massage techniques on your trigger points. Afterwards, the use of moist heat can allow the muscle to relax. It is vital not to overwork the affected muscle group. Some doctor's also believe that physical therapy might help with trigger points, especially pelvic floor therapy. Gentle stretching exercises are also generally recommended in between treatment sessions.

I go for trigger point injections, which is one of the quicker ways to escape the misery that trigger points can cause. My pain specialist uses a muscle relaxant along with a freezing medication, to inject directly into the trigger points. As he inserts the needle, I can often feel the knot actually jump, which is an odd sensation. I can honestly say that this has helped me immensely, especially with my migraines. I've had a few of the "less deep" trigger points in my abdomen and pelvic area also injected which has brought relief from some of the pelvic and abdominal pain.

If you find yourself in quite a bit of pain, it might be worthwhile to investigate whether the pain is being amplified by CMP. There are estimates out there that over 80% of individuals with a chronic pain illness will also have CMP.

The Fertility Journey: More Complications

2009-06-19T11:36:00.000-07:00

As I enter the 6 month of my pregnancy with my baby girl, who shall not be named Tim as per my partner's suggestion!, I felt it was time for an update since it's been awhile.

I had the colonoscopy with removal of the partial bowel blockage done on June 4. Despite the labour and delivery unit speaking with the doctor prior to the procedure in regards to the use of at least some anaesthetic, the doctor wasn't comfortable with using any at all. So this procedure was, as you can well imagine, a *touch* painful. The good news is that they did not find any cancer cells, but they did find that I have a mild case of Crohns disease. They have chosen not to treat it at this time as it is not "severe" enough to treat and the treatment does have implications for the pregnancy, which I have already mentioned. The only thing that still remains a mystery is why I am having bleeding in that area as they could not find a source for the bleeding. So, although it's comforting to know that there is *something* going on with that part of my body I don't know if we have found the whole answer as yet. They were not able to complete the colonoscopy due to the amount of pain that I was having and the pain triggering an increase in the fetal heart-beat. It has been recommended that I have more procedures repeated after the baby is born.

It was hoped that the colonoscopy would help with my constant vomiting and pain. Unfortunately, it hasn't helped. I continue to be extremely nauseated the majority of the time, continue to bring up mouthfuls of food and acid almost "on demand", and feel lousy most of the time.

I have now come to have problems with my blood pressure being too low. It's been about 85/54 at it's highest this week. I've been passing out quite a bit and feeling "woozy" most of the time. The perinatologist has put me on a high sodium diet ("eat all the potato chips and french fries you want") and gives me an IV bag at the hospital twice a week. My sodium levels, electrolytes, potassium and iron levels are all quite low. So we're hoping that the IV therapy will give me the boost that I so desperately need. She said earlier this week that I'm only a week away from viability, the point at which a fetus can live outside the mother's womb, although the thought of having the baby that early scares me quite a bit. She has also recommended that I not be driving, so I am forced to rely on my parents to drive me the 1.5hr trip one-way to the hospital for my IV line to be done. I feel incredibly bad about the additional stress I am putting on everyone, but who could have predicted that it would turn out like this?

On a good ending note, the baby continues to do well and is growing. It's hard to believe that in a few short months we will get to meet our little jumping bean!

Coping with Physical Pain

2009-06-03T15:12:00.000-07:00

A plan for coping with pain should include both the physical, as well as the emotional/social aspects of pain's effects. After all, physical pain wears a person down emotionally and effects his/her social relationships. In a previous post on Coping, I had addressed the emotional/social aspects of pain. This part will address coping with the physical aspect of pain.

Endometriosis can cause pain in several different ways, and thus may best be dealt with through using a combination of different therapies. How does endo cause pain? Well for starters, the endo cells themselves produce and release prostaglandins, which are inflammatory substances which can cause the healthy tissue around the implant to go into spasm and feel "scorched". As the endo cells respond to the hormones each month and begin to shed, any deep "infiltrated" cells can become engorged and lead towards what might be medically termed as "congestion" or essentially internal swelling of the areas around the cells. If these tissues swell enough they can put more pressure on other areas. Endo cells also tend to be "sticky" so the possibility exists for them to form adhesions which can pull and mis-shapen the pelvic organs. These are just a few of the examples of the ways that endo can cause pain for women with the disease. Regardless of how it happens, it's important to understand that your pain is very real, even if others will suggest that you shouldn't be in pain at all. Don't distrust in your body's messages!

Here are a few ideas for helping you to cope with the physical aspect of pain. Even though they are numbered, this doesn't have any bearing on how important these ideas are.

1. Keep a pain diary. When you set out to deal with your pain, you are going to want to know just how effective your treatments are working on your pain levels. You will also want to be able to easily see any patterns over time that occur with your pain, such as a spike in pain levels at ovulation time. A pain diary also communicates the message to your doctor that you take your pain seriously. For women, a good pain diary is going to also track where you are at on your cycle. This is important information to know, as you'll want to learn when exactly your pain tends to flare up from month to month and how it is different than at other times. For example, perhaps the pain is more sharp just prior to your period. This might also mean that a different form of treatment for your pain might help you better at this specific time.

I have grown quite fond of a FREE online pain diary program provided by ReliefInSite.com. Here you can track your menstrual periods, use body maps to enter the location of your pain(s), record what treatments you are currently taking and also have a chance to rate their effectiveness of treating your pain. You can track any alternative healing practices that you engage in as well, and how they effective they are for treating your pain. Over time this nifty program will allow you to print out a graph of your pain, which helps you to see patterns that might occur. You also have the opportunity to e-mail the results to your doctor, assuming that he/she accepts patient e-mails. For online programs, this is likely one of the most comprehensive ones currently in use.

The one thing that is missing from this site which I find to be of importance as well, is food tracking. Many of us with chronic illnesses have food allergies or sensitivities. The Endometriosis Association's research has noted that there is an increase in these allergies among women who have the disease. Even if it's a "sensitivity" it can still lead to just as much discomfort as an actual allergy. For example, if I were to have red meat, I'd be in pain for up to 3 days. I'm talking bent over, writhing in the fetal position pain. Avoidance is the only thing that works in this case. Other common food products that people react to include wheat/gluten, dairy, nuts and certain fruits. Sometimes the only way to find a food allergy/sensitivity is through the complete elimination of the suspected food product. Regardless, it can help to track what you eat with your pain diary, as then you can notice if there is an increase in pain when you have certain products. I also track bowel movements.

For anyone who is interested in an Excel spreadsheet form of a pain diary, complete with a fertility tracker, I have one of these drawn up on my computer and would be happy to send it over. I'm having problems posting it to google to post to this blog entry though.

2. Consider pain management. A Pain Management specialist is often an anaesthesiologist, although a few other disciplines (such as palliative care) may also have these special docs. Many of us will be stuck with the "regular pain treatments" when we see our GPs or GYNs. A Pain specialist is just that, a doctor who specializes in treating pain. What is even better is if you can find one that specializes in treating pain caused by your specific condition. The International Pelvic Pain Society is a good place to start to look for one of these doctors. A good pain doctor will be concerned with how your pain effects your overall quality of life and will work with you to find the right combination of treatments to effectively lower your average pain score.

3. Have a plan to deal with your pain. How you treat your pain when it is rated at a 2 might be drastically different than how you would treat your pain should your rate it a 7 or above. For example, at 2 you might take a plain tylenol/advil, etc., whereas at a 7 you might be reaching for a prescription and going for a rest. This is something that is important to discuss with your doctor. Having a clear plan on how you will treat your pain can help to better manage some of your overall anxiety/fears about the pain.

4. Don't be afraid to try different approaches for dealing with pain. Massage therapy, acupuncture, herbal/homeopathic remedies, cranio-sacral therapy can all be of benefit when dealing with the symptoms of illness. Diet and lifestyle changes can also be helpful for minimizing symptoms. These approaches may not take the actual disease away, but they can help to make the symptoms a touch more bearable.

5. Try a different temperature. Sometimes moist heat can relieve some muscle tension, while at other times icing/coolness might be of help. Many of the ladies in the online support group that I manage have talked about using a rice sock for this purpose, that they can heat up in the microwave. Just be sure to replace the rice from time to time.

6. Consider alternative reasons for your pain. A lot of women with endo have other potentially painful conditions alongside their endo diagnosis. If you assume that the pain is due to endo, and treatment fails to help, possibly the pain isn't being treated appropriately because it comes from a different source in the first place. For example, since my endo diagnosis I have been diagnosed with fibromyalgia. If I only treated the pain as though it were endo pain, I'd still have my fibro pain to deal with!

7. Try to get some form of exercise. Easier said than done when you live a life of chronic pain. However, exercise releases endorphins, or "feel good" chemicals in our bodies which can help to trick the body against the pain signals. Personally, I like yoga as this I can tailor to how I am feeling at any specific time. These gentle stretching exercises can also help to keep adhesions loose, which might help to reduce the overall pain.

8. Don't push yourself! When you are feeling better, there is a tendency to push yourself to do more in fear of not being able to do ___ tomorrow. Unfortunately, through pushing ourselves to do more, we're at the same time interrupting our healing processes. All things in moderation.

9. Combine your coping with physical pain plan with your emotional/social coping skills. No Coping plan is complete without combining ways of managing your physical pain with managing the social and emotional pain that having a chronic illness can bring. If you need ideas on how to cope emotionally with a chronic illness, you can see my earlier blog post on coping.

I hope that you find these suggestions to be helpful. They are by no means meant to be inclusive of all the pain treatment options out there, just enough to get you started on your way!

Drinks of Doom: Facing Surgery Tomorrow

2009-06-03T05:42:00.000-07:00

Tomorrow is D-day. Or should that be S-Day? Tomorrow morning, bright and early, I meet with the gastroeneterologist and the labor and delivery unit to do my surgery. For those of you who haven't read my prior posts about my fertility journey, I'm now 21 weeks pregnant and have a partial bowel obstruction that must be dealt with. Quite awhile back they had ran an ultrasound to discover why I was in so much pain, other than having a large bleeding cyst on my ovary, and they discovered the internal intestinal blockage. This could potentially explain why food has become an enemy to me, in that I'm on several medications just to try to keep any food that goes down from making the voyage back up. I'm rather lucky, in that since it is an internal blockage and not an adhesion related blockage, they can go in through a colonoscopy to hopefully be able to fix the problem. At the same time, he will also see if the Crohn's disease is bad enough to warrant treatment. They will be doing it sans anaesthetic, or with as minimial as possible, which scares the crap out of me (literally). But then again, the risks of not treating this, or the Crohn's if needed, also scares the crap out of me. Either way you look at it, this isn't going to be your run-of-the-mill procedure since there is also another second little person to consider in this picture.

So today is bowel prep day. For those who have never done this, I pray that you never have to find out what this is like. For a "regular" person, this procedure is nasty. For those who have to do it during pregnancy, it's anything but easy. Eliminate food for 36 hours? Sure, if you don't want me to be pleasant! But then drink this awful tasting poop formula that I have to fight to keep it down or risk drinking more of it? Cruel and unusual punishment indeed. One day, I'll be able to look back and laugh at this experience, but today, not a chance!

Just to add insult to injury here, I have the plumber coming at some point to fix the ceiling and I have my 5 year old home with me. Mommy is forced to be brave and to have strangers look at her oddly when she needs to run back and forth to the bathroom. Let's just hope that the water won't be shut off or that could be a recipe for disaster.

I will be sure to update after the procedure is done....

An Amazing Friendship

2009-06-01T13:24:00.000-07:00

Over the past several months I have had the opportunity to develop an amazing friendship. This isn't your run-of-the-mill friendship, but one that has developed solely over the internet; two people brought together by their common illnesses. Perhaps it was fate that brought us together, but regardless of the reasoning, I'm honored just to have gotten to know her. Her committment to help others to learn about chronic illness, especially endometriosis, is both astounding and inspiring. Despite her constant pain, she works diligently to bring awareness and support to others who are affected by the many chronic illnesses which exist. "Jeanne Endo" this blog post is for you my dear.

Many of you will no doubt recognize Jeanne from her old "Jeanne's Endo Blog" which has now moved to Wordpress and become appropriately titled "Chronic Healing". The old title somehow did not seem to fit all of the many subjects which Jeanne speaks to within her blog. Jeanne has spent many hours transferring the information from her old blog to her new, and welcomes all readers to check out her blog entries. I certainly look forward to reading more from Jeanne.

So what prompted me to write this today of all days? Well as many of you know, I haven't been feeling the best the past several months. In the course of our hours long talks together, Jeanne had asked me for my address so that she could snail mail me, which I gladly gave to her. Today, I received the sweetest note from my dear friend Jeanne thanking me for being such a wonderful friend. I can't believe that someone took the time to write me such a lovely and warm letter to say that they appreciate my friendship. It brought tears to my eyes considering the effect that chronic illness can have on friendships. I truly am lucky to have found such a great friend in Jeanne for whom I have the uptmost respect and admiration. Even though we may have never met in person, her friendship is just as deep as if we had cemented it in real life.

Thanks for being a great friend Jeanne!

Coping: Living a Life with Endometriosis

2009-05-22T06:27:00.001-07:00

Coping. It's how we get through the day, moment by moment. If we didn't have any coping strategies, we'd most certainly be left flat on our behinds due to this disease, related illnesses, and the symptoms we experience. We all cope in our own unique ways, we've come to learn tricks to help pull us through the day. But still, at certain points we might find ourselves struggling. Hopefully this post will provide a few more tools to add to your list of coping skills.

I've decided to break this post into two parts; coping with the emotional/social effects of chronic illness and then coping with pain. Hopefully this will shorten the length of the post.

Endometriosis has all encompassing effects on the lives of the individuals diagnosed with this disease. Socially, endo can limit the number of activities that we do with our friends and family, as we may not feel well enough to be constantly on the go. This can be especially tough during the teen and young adult years when friendships tend to rely heavily on going places and doing things together. Our social relationships are also effected by the lack of understanding that we may receive from others, especially when we have to bail out of doing something at the last moment on account of our health. I can't count the number of times I've seen people roll their eyes when I say "Sorry, I'm just not up to it today".

Financially there is the cost, for those in the US especially, of the multiple doctors visits and tests, the surgeries, and the medications. Some women with endo find that they cannot maintain regular jobs and thus their financial situation becomes even more strained. Financial problems can contribute towards relationship problems with our significant others, as we all struggle to make ends meet. We may also come to believe that we are a burden to others when we must rely on their assistance to get our needs met.

Our relationships with our partners also can suffer due to the endo. Many women with endo often have pain during and after sexual intimacy which can limit the sexual relations we have with our significant other. For some couples that are used to expressing their feelings through sexual intimacy, this can put a real strain on the relationship. As research has shown that men tend to show their feelings through physical means, we may feel as though we're not valued within the relationship when we cannot engage in sexual activity. Our sexual identity and self-esteem can be siginificantly affected by this and we may worry that our partners will turn elsewhere to meet these needs.

So what can we do to cope with all of these feelings?

Here's a few ideas. While they are numbered, they are not in any specific order.

1. Learn what you can about endo. You will no doubt be forced to explain over and over again exactly what is going on with your body. If your doctor has taken pictures during the surgery, and you can stomach their appearance, have a peek at the pictures as this may help you to explain to others what is going on. There is a very good copyrighted "Letter from Survivors" for you to read, which can be found at the website hcgresources.com. Some of my favorite books on the topic of endometriosis are: "The Sourcebook" by Mary Lou Ballweg; "Endometriosis: A Complete Reference for Taking Charge of Your Health" by Mary Lou Ballweg; "Endometriosis: A Key to Healing through Nutrition" by Dian Mills; and "Endometriosis for Dummies" by Dr. Jospeh Krotec.

I have found it somewhat of a comfort to learn and understand what is going on with my body, why it's in pain the way it is. It doesn't take the pain away, but it does help to know why it's happening again and again. When someone asks me "What is endo?", I usually respond with a pretty much prepared speech: "It's a disease that affects millions of women where the cells of the uterus grow in places other than where they should be growing and can cause immense pain and other symptoms". I then leave it up to them to ask further questions if they are interested, which is an easy way to not go overboard with the explanation. For my son (5.5 years old) I've told him that "mommy's cells got mixed up maps when they were being made and it causes mommy to be sick".

2. Focus on what you can do rather than on your limitations. You may not be able to get out to walk through the mall and meet with your friends in person, but you may still be able to come up with an alternative as to what you can do. You might not be able to sweep and mop the floors, but perhaps you may be able to sweep and mop one particular room.

3. Break up large tasks into smaller ones. This way you feel as though you are still accomplishing something despite that you might not get the whole thing done in one shot.

4. Get support. Search the internet or ask your doctor/local hospital if they are aware of any support groups operating in your area. Internet support groups, such as Goddesses of Endometriosis are also a good option, as they are available to you 24 hours a day/7 days a week. Try to limit the amount of time and energy you invest in people who don't support you, however you can do so. You need all the energy you can get to live with this illness and the people who don't support you only zap your energy.

5. Help others. You may not feel that you have much knowledge to offer others, however other people often find it a comfort to know that they are not alone, that other people also walk their path each day. Just to hear this can be re-affirming for some people. Your experience is valid, and deserves to be heard!

6. Get active in raising awareness. It's with increased awareness of the effects of this disease that we can begin to shred some of society's misconceptions about us being chronically ill.

This is be no means a comprehensive list of all you can do to help yourself cope with the non-physical side of endo, only a means towards starting you off on your coping journey. I'd love to hear back in what others do to cope with this disease!

The next post on Coping with Pain will be available shortly... stay tuned.

The Exploitation of Illness: Part 2 - Playing the "Cure" Game

2009-05-06T06:28:00.000-07:00

As I sit down to write this, I close my eyes and wish very hard that I didn't have to write a Part 2. It's really with a mix of emotions that I sit down to write this: sadness, fear, anger... It's sad as women who are just discovering that they have endometriosis and are attempting to learn more about this disease are being bombarded with inaccurate information that isn't helpful for them. It's fear as the progress that we have made towards understanding this disease appears to be moving in a backwards direction rather than progressing forward. And it's anger that people continue to exploit the desire of others to live healthy lives. You ask "What is she talking about?"

There has been A LOT of talk in the media lately of individuals being "cured" of endometriosis and of doctors who offer up or support the notion of "cure". For the record, there is NO peer-reviewed scientific evidence available at this time to back up the notion of a cure. The causes of endometriosis remain unknown, despite suggestions from some organizations and individuals that they know what is responsible for causing this disease to develop in women. Again, there needs to be peer-reviewed research available prior to blindly accepting a certain theory of how or why this disease develops. Until such a time as the cause is discovered, a cure will likely remain unknown.

Let me go into a few examples of what I am talking about and why it is exploitative of our hopes for a cure.

#1. Padma Lakhsmi, co-founder of the Endometriosis Foundation of America along with Dr. Tamer Seckin, has claimed that Dr. Seckin's excision surgery has "cured" her endometriosis. Newsweek,People, MedPie have all used the word cured when referring to Padma's struggles with endometriosis. While I am very happy for Padma for getting great symptom relief, this is not the same as having been cured. Padma has had 4 surgeries in the past 2 years to deal with her endometriosis. While I do not have any clue as to her medical records, I would think that her latest surgery would have been rather recently, given that 4 surgeries in 2 years averages out to a surgery every 6 months. This is not the same as a cure. I know of women from my support group, and myself, who have had symptom relief for an extended period of time following a very thorough lap surgery, only to have the symptoms slowly start to come back. I truly hope that this won't be the case for Padma as it is for so many other women. Symptom relief however is not synonymous with "cure". There are many women out there who lack the symptoms of endometriosis but who are diagnosed when they go in for unrelated surgical procedures, or to explore infertility issues. It is noble of Padma to want to increase awareness and understanding for this very misunderstood disease, however spreading inaccurate information is not going to be helpful for anyone. It exploits those who are desperately searching for answers to deal with their disease once and for all.

#2 Dr. Seckin is the doctor whom Padma had declared had cured her of endo and with whom she went into partnership to form the Endometriosis Foundation of America. Dr. Seckin has used his own funds to open the EFA, and therefore has a lot to gain or lose through its success. He is promoting excision surgery as the cure for endo, although he contradicts himself when he mentions the word recurrence in the same speech. I would like to introduce two videos from Dr. Seckin which explains his viewpoint of treating endometriosis:

A. The first one is called "How are women currently being mistreated for Endometriosis?". Dr. Seckin makes a claim in this video that the pain of endometriosis is caused by scarring. Yes, scarring does cause pain, however this isn't the full picture. Research also highlights the role of prostaglandins in creating pain, the role of adhesions in creating pain, etc. Tissue that has been damaged, as is the case with endometriosis, can also lead towards the creation of myofasical trigger points which can cause pain. My point is that there are a variety of reasons for someone to feel pain when they have endometriosis. Dr. Seckin believes that the continued pain of endometriosis is most likely coming from surgeries where the endo was simply burnt off the tops of the linings. In this video, Dr. Seckin fails to mention that even with his beloved excision surgery, there is a recurrence rate.

B. The second video, and by far the most offensive to many women is called "What is a Type-E Personality?". I took great offense to this particular video. Dr. Seckin claims that there is a certain personality that he often sees come through the door of his practice searching for help. He refers to these women as "high-achievers" and goes on to rattle off a few high-powered professions - doctors, lawyers, etc. He makes it sound in this video as though the personality traits of these women are the cause for their disease. Last I checked, medical research had made NO correlation between an occupation and disease. Back a few decades ago, when women started to move into the work-force and endometriosis was just beginning to come to the fore-front in medicine, one of the theories that was put forth was that endo was a "career-woman's disease". That is, that the disease effected those who had delayed childbirth in efforts to further their educaton and begin their career. This myth has been proven false, research now knows that this is an "equal opportunity disease of women" effecting women from all social classes, all ethnic groups, regardless of sexuality or childbearing status. I find it very offensive that Dr. Seckin even makes the suggestion that there is a correlation between socio-economic status and endometriosis. It has to be taken into account that the services that Dr. Seckin provides are often not covered by insurance, and thus those that are of a lower income bracket often can't afford the most expensive form of endometriosis surgery.

Dr. Seckin leaves the proverbial door open with these two videos for having something to blame if the surgery is not successful. In the first case, he could claim "because you didn't come to see me first..." Unfortunately, many women don't see an endo specialist as their first step when being diagnosed. It wasn't until I started researching after I had a name for my disease that I found that there were other types of specialists that may be of more help. Also, since the average time between the onset of symptoms and the diagnosis is 9 years, he could potentially claim that it wasn't detected early enough. He could also claim "Because you had laser laparoscopy, that's why you'll continue to be in pain". The last claim that Dr. Seckin could make is to blame it on our type-E personality. "Who you are as a person is making you sick".

#3 Dr. Redwine is a well-known figure in the endometriosis community who is also on the medical advisory board for the EFA. Dr. Redwine has long promoted the concept of a "success rate" for his services. Dr. Redwine, in a 2003 interview published on MedicineNet.com, has mentioned that it has been known for 50 years that excision surgery is a cure for endo. Dr. Redwine as an excision specialist also charges more for his surgeries than other doctors. When he calculates his "cure rate" I'm left wondering:

a. How many women can afford to go back for a follow-up surgery for endo symptoms when it costs so much in the first place and many insurance companies do not cover this surgery? In the Newsweek article on Padma linked above, she has stated that she has had 4 surgeries. If each of these surgeries cost between $15-$20K or more, how many of us could afford multiple surgeries?

b. Would we go back to a doctor who claimed that he could likely cure us and we remained symptomatic?

c. How many patients does Dr. Redwine refer to other specialties believing the problem to be something unrelated to endo when in fact it is endo? There have been many of us who have played the "referral game" going to urologists, gastroenterologists, rheumatologists, etc. My dad once made a bad, yet sadly true joke when he asked "Is there any -ologist that you haven't been to?".

d. If we travelled out-of-state or out-of-country to have our surgery done by "leading experts" do we have enough time and money to be able to do this again?

e. How many women, on their long battles with this disease and after throwing their eggs in the final basket in hopes for a cure, admit defeat and don't seek re-treatment?

There are several things that can influence a treatment success rate. What is interesting is that Dr. Redwine, would be sitting on a medical advisory board for a foundation that claims a cure for endo when in fact he himself does admit a recurrence rate. Even the Eshre Guidelines for Treating Endometriosis, Stanford Medical School, and the European Society of Reproduction and Embryology, have all discussed the recurrence rate for endometriosis. From the research, there is consensus that endo seems to be recurring after surgery and is thus remaining incurable at the moment.

Its individuals such as these that are making it harder for others new to the disease to learn accurate information and to make informed treatment decisions. This amounts to nothing short of exploiting individual's quest for knowledge and desire for there to be a cure that will provide them with lasting relief.

The Fertility Journey: Entering Month 4

2009-05-02T19:01:00.000-07:00

It's been forever since I've posted, I've fallen into the trap between pregnancy exhaustion and being shuttled back and forth to different doctors. The pregnancy is continuing to develop well, although not exactly complication free, and my health continues to be a continuous rollercoaster.

I'm now being followed by a maternal and fetal life specialist, aka a perinatologist. These are high-risk OB doctors who monitor you often alongside your regular check-ins at the OB. I was referred for the extreme hyperemesis that I've been having, and continue to struggle with. She had put me on a medication called Maxeran and after taking a single pill, I started to have heavy intestinal bleeding. The purpose of Maxeran is to move food out of your stomach within 20 minutes of its arrival. Because of how it works, it's supposed to help with the vomiting. No such luck. I remain on 8 Diclectin pills a day, along with 2 Gravol (Dramamine down in the US) prior to meals. I am also on an acid reducer pill to help with the mouthful of acids that I have been bringing up causing sore throats, and Zofran which I take intermittently to help with the nausea.

My bowels all of a sudden stopped working without "intervention" a few weeks ago. This resulted in me breaking my tailbone. Yes, painful. And no, don't ask. It was discovered that I have a partial bowel obstruction. During that same visit, the perinatologist saw one of the "canker sores" in my mouth and biopsied it. The verdict? Crohns. A referral was made to the gastroenterologist.

By all luck, I manage dot get into the gastro sooner rather than later, seeing him this past week. He wants to do an unsedated colonoscopy on me, most likely around May28, when the baby will be large enough to be safely monitored. He's not thrilled to be doing it, but he says that he needs to confirm the Crohns diagnosis and treat it, as left untreated it could potentially spark premature labour. I'm terrified to death of this.

Meanwhile, back at the perinatologist's office, I had my first urine test come back positive for protein. I've also been swelling in my hands and feet, which leads her to believe that pre-eclampsia is setting in. I curse my endo for this. If I didn't have only one partially functioning kidney (the other is completely dead) perhaps my kidneys would be able to keep up with the extra workload I've been giving it lately. Perhaps I wouldn't be so sick. Perhaps I wouldn't face the prospect of having a potentially life-threatening condition and could enjoy the rest of my pregnancy without this added stress.

I've become sick of being sick. I'm sick of visiting a doctor weekly. Waiting in a waiting room for 2-3 hours for an appointment gets really old quickly. While I am grateful and always will be for the opportunity to be able to carry at least one more child, I just want to have a bit of relief from the constant barrage of complications.

Off-Topic: Epilepsy Awareness Day - March 25, 2009

2009-03-26T05:16:00.000-07:00

December 5, 2006 was a day that changed my life forever. Little did I know at the time that this day would be the start of a long rollercoaster ride that would have a serious impact on everything that would happen from that day forward. Jacob, my then almost 3 year old son and light of my life, had his first seizure.

It all started innocently enough, Jacob looked like he was coming down with something and was irritable for it. But the screaming had a different "quality" to it. He would shriek for like 20 seconds and then would almost drift off, only to repeat the cycle over and over again. When he fell asleep in my arms at about 6pm that night, I thought "good, let him sleep it off and I'll take him to the family doc in the morning if he's still sick". By 8pm he was still sleeping. In fact, he hadn't really moved all that much in terms of changing positions in my arms. I went to change him for bed and he didn't wake up. I tried calling his name, with no response. I tried scraping my fingers along the bottom of his feet with no response. Jacob was in what they medically call a "post-ictal" state. I call it plain terrifying.

I made the drive to the hospital within 3 minutes, running a stop-sign and red light on the way. I was met at the door by a security guard who took my limp son out of my arms and rushed him through the double-doors of the ER where a team of doctors immediately started working on him in the hallway. He was hooked up to every machine going, an absolutely horrifying vision for any parent to see. All the regular tests came back normal, no blood sugar problems, no sign of trauma, etc. It wouldn't be for a few more weeks that we would get the results of having an "abnormal EEG suggestive of childhood epilepsy".

Jacob has for what seems like forever had "night terrors". When we met up with our neurologist we found out that his night terrors were actually one of his presentations of seizures. His sleep-deprived EEGs showed that he had quite a few seizures when he slept, mostly at that time coming from the temporal lobes, which explained quite a bit about his fear responses and his language problems (slurred speech, unable to find the "right" word, etc). Jacob was put on Trileptal which helped with his night seizures for awhile, but we would have to go through regular increases in order to have seizure control. For a few brief months I had my son back.

In September of 2006 Jacob started Junior Kindergarten. He also developed occipital lobe seizures. He would complain of visual distortions, seeing colors, seeing everything either larger or smaller than reality. Obviously, for such a young little guy it was likely terrifying for him just as it was to watch him go through it. He would beg for us to make the seizures go away, and then would tell us "nothing you do helps". It was heartbreaking to say the least. The feeling of not being able to help your own child is one that I don't wish on any parent, it's devastating. Jacob was started on Topomax to help with the occipital lobe seizures, which started another long nightmare.

We had to keep increasing the Topomax in order to get better seizure control. Unfortunately, Jacob did not do well on Topomax, or as some other parents of children with epilepsy call it, "Dopomax". My bright child who was able to read short sentences and knew all of his phonetics upon entering kindergarten regressed. He was unable to feel his bladder being full. He was irritable. But academically he suffered the most, he went down to being only able to identify a few single words. His attention span was non-existent and it caused him to have ADHD type of symptoms. His behaviour was simply off the charts. He then started to become very aggressive with others, which led to him almost being kicked out of school and daycare. We took him off this medication in February 2009 and he has improved so much. I now hear how different of a child this is, that he actually smiles again. I have my old Jacob back once more. He's been put on Valproic Acid in place of the Topomax.

In June/July 2008, Jacob's seizures changed yet again, he started having more generalized seizures and also absence seizures. A referral was made to The Hospital for Sick Children to evaluate him for potential brain surgery. We had this done in January 2009, and it was like a miracle treatment, no seizures that week until after the EEG machine was taken off of him. If only he could live hooked up to an EEG machine because apparently that's the cure for him! This 5 day long test, exhausting for both parents and child, will likely be repeated again in the future.

Jacob has adjusted to his "new normal". He is able to explain his epilepsy to others as his brain sending out mixed up messages to the rest of his body. For a 5 year old child, this is quite unbelievable! He fears others catching epilepsy from him, but we regularly talk about how it's not something like a cold or flu, it's something that happens in your body without being due to germs. He's very aware of his seizures and is thrilled when he meets others who also have seizures. He's one brave little guy whose illness will only make him stronger in the end.

Life for a parent with a child who has this illness also goes on, although a bit differently. I'm very aware of what different activities might serve to trigger his seizures, and while I hate to limit him in these activities, I also know that there is no reason to subject him to these things. We won't go to loud restaurants as he is sound sensitive. If a store is playing too loud of music and refuses to turn it down, we leave. Even Chuckie Cheese is difficult as he tends to get easily over-stimulated by the lights and sounds. Going to the movies is difficult for him, the big screen poses a problem with a lot of light and color changes which triggers seizures. Even though he really wants to learn to play hockey, I'm very hesitant to allow this because of the reflection of the lights on the ice triggering seizures. I still sneak into his room at night and worry about his night-time seizures, and I'm almost always waiting for a phone to ring to tell me that he's had a generalized seizure and is on his way to the hospital. It's a slow adjustment with a lot of paranoia, but I'm learning to relax. I know that I can't stop them from happening, but I can make it easier for him. I can help to avoid the known triggers and offer a little insulation that way. One of his favorite things to do is amusement park rides and while I'm always aware that this can trigger them as well, a kid does have to be a kid sometimes. This mom shall get through life with epilepsy as well.

Pain And Suffering: A Buddhist Perspective

2009-03-06T07:54:00.000-08:00

Pain: One of the most common symptoms of endometriosis and yet it remains poorly understood and accepted. Pain is natural, it is our body's way of telling us "Hey, something ain't right here! Pay attention please!". Endo causes physical pain in a few different ways:

1) The blood that is shed from endo cells each month sears the surrounding "healthy" tissues that it comes into contact with;

2) Prostaglandins are produced by the rogue endo cells. These are chemicals that cause inflammation and thus pain;

3) Endo cells can contribute towards the formation of adhesions, which can bind organs together and pull them out of place.

Those are among the more common explanations as to how endo causes the chronic pelvic pain that many women feel.

Iny my journey, I've encountered many a health care professional, as many of the ladies in my support group have also had the displeasure of encountering, who do not believe that this pain is real. That this pain is nothing more than "period cramps" and that us women who suffer from the physical pain of endometriosis are just more "sensitive" towards what is normal for everyone woman to go through. I must say, with a hint of sarcasm here "So, the internal bruising that I get each month through the side of my torso when my period begins is normal and doesn't cause me any pain?". Uh huh, and I'll get a Lexus SUV this year for Mother's Day.

What makes the pain of this disease so mystifying to many in the medical community, at least I feel, is that there is no connection between the degree of severity of a woman's endometriosis and her pain levels. I have met many women who have had a "single spot" of endo found during their surgery and who have been more or less bedridden. And then I have encountered many other women, who fortunate for them, did not discover their severe degree of disease until they had an unrelated surgical procedure done, such as an appendectomy or a tubal ligation after they were done having children. I think that most people tend to think of pain in relation to the severity of the condition, which is a myth that desperately needs to be destroyed in this case.

I know that many out there will disagree with my next part on the concept of suffering, however what I want you to take away from it is not any of the religious background but the concept behind what is being said. I have spent quite awhile examining my own "religious" beliefs, and the best answer that I can come up with that fits for me and my views is Buddhism. Within the Buddhist writings there is a lot of mention of human suffering, which I have found helpful in getting me through some of the difficult parts of my battle.

In "The Art of Happiness" by His Holiness The Dalai Lama, he writes "But there is a difference between physical pain, which is a physiological response, and suffering, which is our mental and emotional response to the pain". He goes on to further ask "Can finding an underlying purpose and meaning behind our pain modify our attitude about it? And can a change in attitude lessen the degree to which we suffer when we get physically injured?".

I've suffered with this disease. Who wouldn't? The consistent and constant pain that many of us survive through daily. The discrimination that many of us continue to bravely face within our society. These are the things that suffering is made of! There have been times, especially during my rapid withdrawal from fentanyl (Duragesic patch) that I was seriously going to die. One of the things that has helped me to pull through is my desire to help other individuals learn more about this disease, to advocate for better treatment within the medical community and society at large, and to be able to help bring comfort to others who are living with this disease. I believe that I have found an underlying use for what I've been through; to be able to share my experiences with others in order to help them brings me a sense of relief from my own "suffering". It is the satisfaction of saying that I made a difference that makes all the difference in perspective for me and helps my mind to shift once more back from the state of suffering to the state of "living".

To His Holiness The Dalai Lama, yes I do believe that in finding some meaning and purpose in our experience can help to alleviate our state of suffering. It won't take away the physiological pain, it won't stop the disease from wrecking havoc, but it does help with our mindset and our attitude towards this experience in life in general.

The Fertility Journey: Admitted to the Hospital

2009-03-05T10:13:00.001-08:00

why can't anything be easy? I mean, seriously, easy would be a nice route to take for once. I have a large corpus-luteum blood filled cyst on my right ovary that is causing some serious pain. But the more stressing point is that I am having severe, severe morning sickness to the point where I haven't been able to eat solid food for 4 days. The RE put me on Diclectin for morning sickness this past Tuesday but it hasn't helped with the nausea and vomiting. So I am on my way to the hospital to be admitted as per my RE's orders. He has called the ER to let them know that I am coming through and has also ordered one of the high-risk pregnancy doctors to see me while I am admitted. Let's hope that this can provide some answers (and some much needed rest!).

Not exactly how I planned to be spending my pregnancy.

The Importance of Diagnosis

2009-03-01T17:03:00.000-08:00

Endochick had posted on her blog, Endometriosis: the silent life sentence, quite awhile ago in regards to the importance of diagnosis when you take into account all the various illnesses that can mimic the symptoms of endometriosis. In this case, Endochick had spoken of how her sister was suspected to have endometriosis but was actually diagnosed with cervical cancer. Not only does cervical cancer have similar symptoms as endo, but so do other gynaecological cancers (I have endometrial cancer and the symptoms are very similar, but ovarian cancer would also have similar signs. Other illnesses that have similar symptoms but different treatments would be pelvic adhesions, pelvic congestion syndrome, Poly-Cystic Ovarian Syndrome, and Interstitial Cystitis to name a few. Thus a diagnosis of endo is necessary in order to rule out other conditions and to receive the proper treatment.

The diagnosis of endo was very reassuring to me. It meant that after 10 years of being told that the pain was "more or less in my head" since no diagnostic imaging tests or bloodwork had ever shown anything of significance, that I was not making it all up and that there really was something wrong with me. If doctors had their way I'm sure I would have stopped complaining and given up years before this.

In my years of running the online support group, I have met several women who have been treated without a confirmed diagnosis of endo. A few of these women have been treated with the "harsher" endo treatments, including Lupron. I keep asking myself why on earth a doctor would recommend a chemotherapy agent to a patient without first having a confirmed diagnosis of something. I haven't yet arrived at any good explanations for this one. After all, if some of these treatments have very strong side effects which can last for years post-treatment, shouldn't there be a clear reason to take them?

Having a diagnosis is empowering to a woman. It means that the woman can begin to educate herself on the various aspects of the disease and can work alongside their doctor to come up with the best treatment option that suits them. I can't stress this last point enough, far too often women will blindly accept the "doctor knows best" philosophy of society. While yes, a doctor's opinion should always be considered for what it is, it's also important that it agrees with what the woman wants and desires. If a woman wants to try other options other than a hysterectomy, she deserves to have the other options presented to her and be supported in her decision. The knowledge that comes along with knowing how advanced your condition is, will also help you to plan which treatments you might be willing to try.

The diagnosis can seem overwhelming, after all it is life changing to finally be diagnosed with an illness that will last the rest of your life, but hopefully after reading this those who think that they may have this illness will rest assured that it will make their life a bit easier in the end just to know. Power seems to come with knowing in this case.

Endometriosis: Have you Heard of it?

2009-03-01T06:43:00.000-08:00

In looking back, I first heard the word "endometriosis" while sitting in my On-Campus doctor's office complaining (yet again!) of unending periods, pain, and heavy bleeding. The word came out so quickly, and I was feeling so rotten that I had no clue what on earth she had just said, and when I asked her to repeat the word she just said "We'll send you for an ultrasound and then I'll explain it to you depending on the results". I went on my way and never heard the word again, as my transvaginal ultrasound (aka the torture device) came back normal. It wouldn't be until 5 years later that I would learn that you can NOT diagnosed this disease through any of the medical imaging equipment.

I had read very tiny inserts into magazines like Cosmo and Glamour that if women had "bad cramps" they should see a doctor to rule out endometriosis. But the pain of endo is more than just "bad cramps", and many doctors are still under the impression that all women have somewhat painful periods. Some of them even still believe that women with endo are just "more sensitive" to these normal period pains.

I've encountered many people who simply do not know a thing about this disease, and who could blame them when the media offers very little coverage? So, to kick off March 2009's Endometriosis Awareness Month, I'd like to introduce you to the word "endometriosis" and tell you a bit about it.

Endometriosis is a chronic, incurable illness effecting exclusively women where the lining (the endometrium) of the uterus grows in places outside of the uterus. These little lost cells still respond to the monthly hormonal changes that result in a women having her period, only instead of being able to be expelled from the body, there is nowhere for the blood and other cells to go. They cause scarring to the healthy tissue around them, and the little cells start to spread around the pelvic and abdominal cavity. It can cause intense pain as the hot, chemical filled blood sears the healthy surrounding tissues, or the sticky liquids "solidify" to create adhesions which can tug on organs and make them misshapened. Researchers do not know what causes this disease, and without an identified cause, there can be no cure developed. Endometriosis acts a lot like cancer cells in the way that it progresses, so much so that some have compared it to having a "benign form of cancer".

89 million women, 20% of the population or 1 in 5, have this disease. Many probably don't even know it, as it can take on average 7-9 years to be accurately diagnosed. Once diagnosed with this disease, a woman must choose between treatment options that might be useless or might cause life-long side effects. That is, if she is offered a choice at all, as quite a few doctors do not present ALL of the options for managing this disease. I myself have been to several doctors who have told me to either have a baby or have a hysterectomy as a form of treatment (both are not cures for the disease). Many women are simply offered a hysterectomy with the mistaken assumption that if you remove the uterus, the disease stops. If only it were that simple.

Women with endo also face the social repercussions of having a chronic, painful illness, that may lead to infertility. We can't openly talk about our disease in public as there is still a taboo that exists on talking about periods, pain, and chronic illness in general (other than cancer). I have often felt looked down upon because I have almost daily pain, as though I were somehow making up how bad it was in order to receive some sort of attention. As there are many myths that exist around this disease, many of us survivors have encountered people who strongly adhere to these myths, such as the hysterectomy cure, and look down upon us when we try to explain the reality. We have been made to feel like hypochondriacs, and in the case of those of us who are also diagnosed with the many other illnesses that go hand-in-hand with an endometriosis diagnosis, that feeling is even stronger. I've had people roll their eyes and comment outloud "Here we go again..." as though I could somehow control how I was physically feeling. Even worse, I've had to attempt to hide how I am physically feeling, an exhausting feat at best, in order to "make people happy" and not bring everyone around me down.

It is my hope that one day we can have a cure for the 89 million of us out there. Until that day, I will settle for access to better treatments and increased understanding from the community at large. Endometriosis doesn't have to be a hidden disease.

Raising Awareness: Media Campaign for Endometriosis Awareness Month (March)

2009-02-21T10:12:00.000-08:00

March will mark the beginning of yet another Endometriosis Awareness month. Is the public, referring to those without the disease, any more aware of this condition than they have been in the past? The past year has marked a few celebrities who have come out with being diagnosed with the disease, Dancing with Stars Julianne Hough, and Lacey Schwimmer come to mind, as well as Stephanie St. James, Broadway Star of the "The Color Purple". In the case of the ladies from Dancing with the Stars, the media, at least in my opinion, did a poor job at explaining the realities of this disease. EndoChick blogged extensively on the inaccuracies portrayed during their health disclosure to the media. For more information, please see her blog.

Stephanie St. James has done a fantastic interview with iVillage posted on YouTube in regards to the disease. Another video of her speaking on endometriosis is also available on YouTube.

While it is nice to see more individuals ith celebrity status sharing their personal battles with this disease, it would be even nicer to see a national-wide magazine or newspaper carry a story that accurately reflects what this disease is all about and just how much it interferes in a person's quality of life.

To that end, my good friend Jeanne Endo has created an on-going petition that she would like anyone who desires having more awareness about this disease created, to sign. This will help show in numbers to the various editors and publishers just how many of us out there would really want to see this information in print. Please help Jeanne collect as many signatures as possible through visiting her blog and signing the petition. You may also wish to direct others to her site to sign as well. The more individuals who sign, the more likely the media will be willing to hear our case out.

Jeanne's petition is located at: GoPetitions

The Fertility Journey: Me Vs. The Vampire

2009-02-20T11:57:00.000-08:00

As everyone knows, when you're pregnant they send you for bloodwork. Not just a single vile, that would be too easy, but they have to drain every ounce out of you and then some. Since I've been "sick" forever, there really is no fear any longer with getting it done, it's just that it's still not the most pleasant thing in the world. I pass out at the sight of blood, always have and likely always will.

So I caved today and went for my bloodwork, since I had to take my son to get the blood levels of his anti-seizure medication (Depakene) anyway. I decided I was going to show my son what a brave person looked like when they were having their blood drawn, in hopes to avoid the screaming mess that might go along with taking blood from a 5 year old. I volunteered to go first. But first, I had to fill out a pre-natal screening form. The equivalent of being put on examination for all the world to see. They ask how many pregnanices you have had (I put down all the I know of which now equals 11) and how many live births you have had (1). Seeing the stats on paper was just enough to throw me for a major loop. But then the tech looked at me kinda odd when I handed it back to her and I simply said "I've had 9 miscarriages" (1 live birth + this pregnancy makes the grand total of 11). The room turned silent and I got looks of pity from everyone, great just what I needed to feel better (said with only a hint of sarcasm!).

We got called back and the 1st vampire tried three times to get blood from me. She pushed down on the veins hoping to draw blood out. No such luck. I almost passed out. While she called for vampire #2 to come take the blood from me, she moved on to Jacob. Well, crisis averted, he only said a loud "ouch" and then a "Thank you but I really didn't like that!". At least he can use his manners.

Vampire #2 came back and took my blood on the first try, thankfully or else my arm would look like swiss cheese. It's now hurting to the point of not being able to extend it, I'm guessing Vampire #1 might have gotten a bit lost in digging for veins which is why it's a lovely shade of purple and black. At least it matches how the rest of my body feels!

At least this round is done and out of the way. I lived to tell the tale of another trip to the vampire lab, at least for this round!

The Fertility Journey: The testing verdict

2009-02-18T06:41:00.000-08:00

Whoever said the word "impossible" has not met me. Despite being given very low odds at achieving a pregnancy, and despite the intense stress that I have been under for the past few months, I am now 6 weeks pregnant. But it appears that this pregnancy too is going to be eventful :(

I've been having a lot of intestinal bleeding, with sharp shredding type pains throughout my abdomen, with sharper pains on my right pelvic area. After I passed out Monday morning, Brian took me to the ER, which is a story in itself, where I didn't get seen by a doctor. Apparently, people who have sprained ankles and the common cold are more vital to be seen than people who have a high-risk pregnancy. We spent from 3pm until we left at 8:30 waiting to be seen by a doctor. I finally had enough and went to the nursing station, only to be told that it would likely be at least another 8 hours before I would even be seen. You can't expect a pregnant person to not eat, it just doesn't work out well, so we left.

I managed to get an emergency appointment with the fertility specialist yesterday who was quite worried that it might be an ectopic pregnancy. He managed to get me an emergency ultrasound done right away to rule this out. Just as a sidenote, it's cruel and unusual punishment to expect someone to provide a urine sample and then expect them to get a full bladder right away so that they can have the ultrasound.

In any case, it's not an ectopic pregnancy. Everything is right where it should be and I am 6 weeks along. However, it's not without a minor complication. It wouldn't be me unless I had something odd going on! It turns out that the pain is being caused by a 4cm x 5cm hemorrhagic cyst on the right ovary. For those that don't know, this is a blood filled cyst, quite a large one at that. To me, it almost sounds like an endometrioma. It's leaking somewhat, so it might burst anytime, but from the sounds of it, it won't threaten the pregnancy, only my pain levels.

For now, I'm on the frequent flier plan at the doc's office, I go back in two weeks. It looks like it's going to be a long 34 weeks!

The Fertility Journey: Thoughts and Feelings on the Octuplets

2009-02-11T12:01:00.001-08:00

I respect that not everyone is going to agree with me on this one, but I wanted to write on my feelings in regards to the recent birth of the Octuplets in the US.

As someone who has struggled with fertility issues and multiple miscarriages, I know that my feelings are in part related to the jealousy I feel about not likely having the large family that I dreamed of, but I do believe that some of my feelings are at least warranted in this case.

As many of you know, the set of octuplets were born through IVF to a single mom who was already raising 6 children, 3 of whom according to the press have disabilities. I understand that the purpose behind having multiple embryos implanted is so to give the carrier the best odds at conceiving even a single pregnancy. Even with IVF treatments, there is still great odds at not having any of the pregnancies take. IVF is also to be known to be responsible in a lot of cases for the birth of multiples. Any birth of multiples places the mom at greater risks of pregnancy complications and the children at a greater risk of being born with disabilities. This was clearly explained to me by my RE at my last visit.

IVF is a huge moneymaker for doctors, especially those practising in the US. On average, the doctor will implant 3-4 embryos in hopes that one will take. In this case, the doctor implanted 8. At least. If we consider that the chances of all 4 implanted embryos actually taking are very very low, then the chances of all 8 taking hold are even slimmer. Why would a doctor implant 8, knowing that the risk of having at least 2 would likely be higher? Especially in the face of the potential risks involved?

I just get this feeling in the pit of my stomach that this was a publicity stunt. If the outcome of the implantation was successful, it would highlight the "success" of the fertility doctor involved, likely increasing his caseload (and thus his revenue). If the outcome was successful for the mother, then it would increase her to celebrity status and likely lead to book deals, reality show offers, and a whole heck of a lot of publicity in general. This family has already created a website to gather monetary and gift donations from others who would like to send them in. This is a free world and you can ask for whatever you want, but it all just seems a little unethical to me. Nevermind the fact that this family lives in a state of poverty. How is it financially ethical to have this number of children when you have difficulty feeding the family members you already have? How is this acting responsibly when you already have 6 children and likely not a large support system in place (her mother has stated to media sources that she objected to the whole implantation in the first place)?

Again, these are just my thoughts on the subject and I know that a lot will disagree with what I have had to say.

The Fertility Journey: To Test or Not to Test

2009-02-06T16:51:00.000-08:00

As I sit down to write this, I am on day 32 of my cycle. Yes, day 32 and I am late by all means. I know that I have been under considerable stress as of the past few months, and that stress can delay periods. However, stress has ALWAYS been a trigger for me to have a period, even if it's within days of just ending the last one.

I had spent ovulation week at the hospital with my son having his Video-EEG done, which meant no sex during ovulation week for me. Hmmm, maybe my partner does have the super-sperm that he's been declaring all along. From what I've read sperm can last in fertile fluids for up to 5 days. But given my odds, let's be realistic about how likely this is!

I have no real pregnancy type symptoms to declare at this point, although I have been drinking gallon upon gallon of water lately and can't seem to get enough food. No vomiting, no sore boobs, nada. However, the endo that is within my torso muscles has not begun to change color as yet as it does just before the onset of my period monthly. This morning I had thought my period was going to show up, but it was just rectal bleeding. Maybe my period has decided to come out the wrong hole instead.

So I sit here playing a game much like "Does he love me or not" that we play with the daisies but have substituted "To test or not". At this point in time, I'm pretty fragile emotionally, and just don't want to go through the disappointment of not having the results I hope for. If no period shows up this weekend, then I might break down and buy the EPT.

Time will reveal all...

Finding an "Endometriosis Specialist"

2009-02-04T05:03:00.000-08:00

Ever since I took over the running of the Yahoo Support Group "Goddesses of Endometriosis", I have been bombarded with the constant question of how does someone find a specialist who knows something about this disease. For those who have read my first online posting detailing my journey to date with endo, you may recall that I went through doctor after doctor in my search for someone who understood and was able to treat me. It is a frustrating and exhausting part of many of our experiences, and it shouldn't be a reality in this day and age. And yet it is. Doctors out there still hold tightly onto such myths as "this treatment will cure you" (there is no cure), "you're sick because you delayed having children" (it used to be thought that only women in their 30's and upwards had this disease), "it's not that painful" (umm, hello? internal bleeding?)... and many more. So what is a woman who is either diagnosed with endo or fears that she may have this disease supposed to do?

The answer (or at least one of the better options): Find an endo specialist. Easier said than done for a lot of people, especially those who are knew to this journey and are unsure of what to look for, what to ask, and where to even begin. After all, should a regular gynaecologist, someone who specializes in treating women's basic reproductive health matters, be knowledgeable on a disease that effects 1 in 5 or 20% of all women? If only it were this simple.

For whatever reason, it seems that quite a few ob/gyns out there are completely aware of the complex aspects of this disease. Many of us often get the "vibe" that our ob/gyn is throwing up their hands in a display of defeat when the treatments that they are aware of fail to resolve our symptoms. For a woman who is already deep in the throes of despair, this can drive them even further into feeling like they should just give up.

An endo specialist is typically a reproductive endocrinologist, a doctor who has gone beyond the ob/gyn designation to study hormonal diseases of the reproductive system. Word to the wise: not all reproductive endocrinologists are endo specialists, many of them only concentrate on the disease from a fertility aspect rather than a management perspective. We know from research that in many cases, women with endo have "out of whack" hormonal systems, which makes seeking someone who explores hormonally related illnesses a better option right off the bat. If endo feeds off hormones, then it is in part a "hormonal disease of the reproductive system". So what else makes these doctors a better choice?

1) They tend to see more patients with the disease. If a regular doctor is only seeing a handful of patients who have the disease, and their condition is being "well-managed", perhaps they don't have the full picture to deal with more complex cases where the patient doesn't respond so easily. In seeing more patients, we can also assume that they are going to have a wider perspective based upon the collective experience of the women that they treat. If they see more patients, they also likely have better surgical skills. After all, doctors can only improve their skills with experience. Improved surgical skills also means that they may feel more competent at removing endo from places that some other doctors won't touch, such as the bladder and bowel.

2) They tend to keep informed on the latest research. Who wants to know only about the developments that occurred 20-30 years ago with this disease? And yet, if a doctor doesn't bother to read anything on the illness post-graduation, how are they going to know all of the advances that have been made?

So, how does someone go about finding one of these more knowledgeable doctors? Here's how I help others locate specialists in their area:

1. The Endometriosis Research Centre facilitates a Yahoo support group called EndoDocs. This is a list of doctors that other women with the disease have recommended throughout their experiences.

2. Women's Surgery Group has a smaller list of specialists.

3. Victoria's website keeps a list of specialists as well.

4. Next up, I will look at the following medical associations which provide doctor finding services:

The Society for Reproductive Endocrinology and Infertility
American Association of Gynaecological Laparoscopists (AAGL)
American Society for Reproductive Medicine
Society of Reproductive Surgeons

5. You might look at sites such as locateadoc.com (and click on infertility under the area of specialty), ratemds.com, suggestadoctor.com

6. You might also look at your local hospital's webpage and search out the doctors that work at that particular hospital, most of the time they will have some type of bio available online.

With the names of the doctors that I find, I will then put them into google so that the search bar reads "Dr. Name" endometriosis. Of course you will put the doctor's name in question into the quote marks. So for Dr. Redwine for example, the google search bar will read "Dr. Redwine" endometriosis This should pull up any association the doctor has with the illness. If they do specialize in the disease, you'll likely gets hits for research that they have done, you might come across other women who have mentioned him/her, etc... The more hits, the better. Of course, if you don't find any hits at all with the connection between the name and endometriosis, they are less likely to truly specialize in the disease.

I hope that this helps to lessen people's search for medical attention and relieve a bit of the frustration that this disease carries with it.

The Exploitation of Illness

2009-02-02T16:59:00.000-08:00

This post has been a long-time in the works. With all that I have learned about this disease through experience, reading medical journals and textbooks, I've been growing more and more disturbed (or is it irritated?) by the increase in those that promote a "cure" for this disease.

If I flash-back to when at 23 years of age I finally had a name to call my experience, I had just dove into finding everything I could out about the disease. Along my journey from doctor after doctor, I became even more desperate, and would have likely grabbed out for anything that offered an ounce of relief from the constant pain. I don't think that my feelings of desperation back then vary all that much from the majority of those who also live with this disease. I also don't believe that these feelings are at all irrational. Who wants to live with a disease that causes pain, financial distress, social isolation, and often effects our dreams for our own future? Who when at their absolutely wit's end with the treatments that their doctors are or in some cases, are not, offering wouldn't reach out to any hand that is offering to help?

Now that I've learned so much about endo from a variety of different sources, I'm more aware that often these hands that are reaching out to others may not be reaching out with the best of intentions. There are "agencies" or certain people out there who do in fact exploit the suffering that we go through, most often for their monetary gain.

The World Endometriosis Society's October Issue of their E-Journal featured a letter from the President of the Society on the topic of this form of exploitation. Professor Hans Evers, the President of the WES had come across a website that was blatantly promoting a cure for this disease, in this case through curing the candida albicans within the system. This approach, immunotherapy, has been reviewed within The Endometriosis's Association newer book on the disease; Endometriosis: The Complete Reference for Taking Charge of Your Health. The doctor on the website in question is not an endo specialist, not even an Ob/gyn, however claims that they can successfully treat this disease through the immune system approach.

Ok... Well yes, I do experience the lovely intestinal candida problems, there is no question. And when I avoid yeast and unnatural sugars while taking probiotics, it does not seem to affect me as badly. However, how can this person claim that the candida causes the endo in the first place? As Professor Hans also points out, there are only a handful of articles on the topic of endometriosis and candida, with no clear causal relationship being spoken of within the research. While there have been advances in identifying different genes and enzymes which might contribute to the disease formation, there still has been no cause found to date.

Without a cause for the disease, how can there be a cure? At the moment, the best "cure" appears to be excision surgery as it typically means a longer length of time between repeat surgeries. But even this is not a cure, as many of the women in my support group who have had endo excision surgery, have still gone on to have endo afterwards. The point is, if the process that creates the disease in the first place is still present after the surgeries and other therapies, than it would only make sense that there is a chance for it to return afterwards. Even if you remove the cells, the process that caused it to go haywire in the first place, may still lead towards it going haywire at a later time.

Many herbal companies who so freely advertise with their headlines of "Beat Endometriosis Naturally" or something along those lines, also prey on our desperation for their own profits. I have come across one such website which claims to have the cure in a magic herbal pill form, and suggests several times over again that research has revealed it's effectiveness. However, there were no direct hits on the various medical websites when looking for the name of the herbal concoction and the word 'endometriosis'. I myself had wrote to this manufacturer several times to request further information and did not receive any replies. My telephone calls also went unheard.

The third source of exploitation that has been nagging at me has been an individual who represents themselves as being part of a non-profit foundation which does not exist. This person has claimed to have found a pharmaceutical product that has cured them of the disease. However, in earlier e-mails, prior to this person somehow "forgetting" the facts, they had mentioned that after the "miracle treatment" within the repeated surgeries for supposedly only adhesions that there had in deed been "minor" endo cells found. Given my research into endo, I know that oftentimes even when there is only a handful of visible cells that there are typically more that are microscopic, invisible to the naked eye. There is a complete difference between being "cured" of the disease and still having minimal endo cells present. Endo cells are endo cells no matter how many or what size they might be.

All of these forms of exploitation are disgusting. We truly are a vulnerable population due to our illness(es) as Dr. Hans points out. I give major kudos to the World Endometriosis Society for highlighting this subject and doing their part to raise awareness. There will always be others that will try to take advantage of our situation, however with more awareness highlighting this area, hopefully not many more of us will have to be "victimized".

Off-Topic: My 3-day vacation with my son at The Hospital for Sick Children

2009-01-19T06:52:00.000-08:00

Today is D-day for me, the day that I finally might get some answers as to my son's health. For those of you who don't know, my son, 5 years old, has been diagnosed with epilepsy.

He had his first seizure just a little over two years ago, however had always suffered through terrible night terrors which were shown through an EEG to actually be seizures. His epilepsy is continually changing in that the first seizure was a generalized seizure where he went unresponsive for 6 hours. He had the night-time seizures. Then he started to have occipital lobe seizures where he sees things distorted. To add to the mix, this year he has been having quite a few absence seizures. He is on 3 different anti-seizure medications at the moment.

After waiting a good 7 months, we're on our way to the Epilepsy Monitoring Unit (EMU) at The Hospital for Sick Children where he will be having a Video EEG done over the course of the next three days. I'm dreading what the stress and lack of sleep is going to do for my pain levels, however we all push on to do whatever it is we must get through. I'm terrified of getting these results, but on the other hand, it's better to know exactly what we are looking at rather than digging our heads into the sand...

Melissa

The Fertility Journey: Part 2

2009-01-09T09:11:00.000-08:00

It's been one of "those" days and it's only noon.

I went to see my endo specialist this morning, to talk about the possibility of surgery #4 or going on Clomid. He got to see my in my "finest" of shapes since my cycle started earlier this week and I could barely stand up straight. We did the endometrial biopsy to make sure that the cancer cells have not progressed any, which would not be a good sign for my fertility journey. To my readers who have not had the "pleasure" of going through with an endometrial biopsy, imagine if you will someone tearing a piece of your uterus out with needle-nose pliers.

In regards to my most recent miscarriage, according to the endo specialist, of "normal healthy" women's pregnancies, 8% will end in miscarriage. Gee, that's reassuring!

We can't do the Clomid for three reasons:

1) It may progress the endometrial cancer;
2) I don't have anovulatory cycles and I did manage to get pregnant which leads him to believe that the problem is not in egg production;
3) The risk of conceiving more than one child is too great, which means that the risk of pregnancy being life-threatening for me is increased dramatically.

Let me explain the last reason a bit better. As you may have read from an earlier post, I only have one functioning kidney, and that kidney is not at 100% functioning either. During a pregnancy, the woman's body is put under a lot of physical stress, including the kidneys. When I was pregnant with Jacob, I learned just how physically taxing the pregnancy would be for me. My blood pressure would frequently bottom out, I was vomiting around the clock despite being prescribed Diclectin, I had heart palpitations and suffered two kidney infections. For me to potentially carry twins or more would be very dangerous to my health. Which also means that IVF is out for the future, since your chances of twins or more is also greater in that case.

So the plan for now is to treat the pain once the cycle has begun with percocets. I had my bloodwork done with the CA-125 test added to it to make sure that the ovaries are healthy. I am to see him in a "couple of months" to determine if we should go ahead with surgery, but he would like for me to try managing the pain and keep trying to conceive rather than do surgery until it gets "really bad". Now, it is bad (the endo symptoms that have so far returned) but it's not as unbearable as it has been back when it was horrific prior to meeting this doctor. I know that I can live with the pain, I keep imagining the end-product in my arms, a sweet little baby to motivate me and drive me onwards.

I have mixed feelings about today. I'm sad but I'm also reassured that I have a really good and compassionate doc who is working WITH me. I want this so desperately and was really kind of hoping for the Clomid prescription, but what he said to me about my being a high-risk pregnancy with only a single baby, I know that no matter how much I want this that it's not worth putting my life on the line; I have Jacob and those that I love to also consider in this whole "big picture" too. So on the one hand I am crying tears of sadness to know that if natural methods fail to produce a child then it might not be possible to go through any ART (artifical reproductive technology) procedures. On the other hand, I'm content in at least knowing what cards exactly are on the table.

And even with all of this news, I am clinging on to hope. Whatever happens I already have the most wonderful gift in the world; people who love and support me. I have an amazing partner who declares that I am all that he needs and if it doesn't happen, then it doesn't. I have a beautiful little boy who thinks that he has a "great mommy" and he's also the centre of my universe. I will always remain hopeful that I can give my partner a child, and my son a brother/sister. Hope is something that allows for us to keep moving forward even in the face of the steep cliff-edge. Hope is something that must remain alive for without it, we have nothing driving us onwards, nothing to strive for, and live in the opposite of hope: despair. Personally, I choose happiness so I choose hope.

Melissa

WARNING to the Endo Community: Dr. Gregory Smith

2009-01-05T09:27:00.001-08:00

Update: As many individuals have reminded me that this individual might be either "borrowing" or faking a name, I am editing the post to reflect that no one knows for sure what this person's "real" name might be. It is important to take caution in all of your interactions with others, and don't be afraid to ask the tough questions when you have them. As always, the law says that we are innocent until proven guilty, however it is important to alert others to the potential dangers that are out there within the endo community.

As many of you know, for the past 7 years I have moderated the Goddesses of Endometriosis yahoo support group for women with endo and those who want to offer their support. I love doing this as it's something that I feel I can give back to the community in hopes of helping others avoid the even some of the pitfalls that I've been through in my journey. A life dedicated towards serving others is also a Buddhist principle that I try to follow in my life, hence the social work degree.

What is sickening me to death today, and it's not the fact that I'm on day 31 of my cycle!, is the fact that there are people and organizations out there who are all too willing to take advantage of our suffering. To play on the desperation of others who are anxiously searching for their "miracle" is a very sick and perverse thing to do. We're all searching for answers, we're all searching for treatments that work, we're all suffering in our own little (or perhaps not so little) way. After all, who among us wants to live in daily pain?

"Dr. Gregory Smith" joined my support group sometime within the last year and a half, and I've been trying to keep close tabs on this individual since. I have received several complaints from women on my support group, alleging that he has contacted them privately and "asked very forward, personal questions in regards to (among other things) sex life".

I had e-mailed this "gentleman" several times to ask what his area of specialty was. I figured if you're going to use the title in your name, then be willing to discuss it! I also asked him his purposes of joining the support group, how did he get involved in endo awareness, essentially digging for any information at all. I did not receive any responses, but he did drop off from posting messages to the group for awhile, although I have no idea if he's posted privately of course!

Yesterday, I had the fortunate and random opportunity to meet yet another endo lady from a different online support group. She had the unfortunate opportunity of possibly e-mailing with "Dr. Gregory" and had responded to my e-mail asking me if I had heard about him. The rest of the conversation was very disturbing and something that ALL of us should take strong note of:

"Dr. Gregory Smith" had befriended this lady on an online support group, although he was out of state. I think nothing of this since I speak with many worldwide in my efforts to raise awareness. However what happened next is quite disturbing.

"Dr. Smith" had apparently asked her very specific and detailed questions about her sex life. She got the impression that he was a complete "pervert" from what he was asking. He then allegedly proceeded to tell her that if she provided him with her health insurance information and her previous health history that he would then connect her with an endo specialist!

This is personal information. Individuals submitting info to "Dr. Gregory" have no idea where info sent to this "gentleman" is going to, who is using it and for what purposes. It's highly inappropriate to ask endo patients within a support group these types of questions, and for detailed health information. Whether this "gentleman" is a doctor or not, it all seems highly unacceptable!

I am urging you all to PLEASE take note of this. If any of you has had any personal dealings with "Dr. Gregory Smith", please let me know. Your health information, along with your health insurance plan, should not be abused by someone who is so obviously trying to take advantage of our suffering.

NOTE: Endochick has posted a good blog about protecting your personal information while online. It is highly worth taking the time to read this important notice! Endochick's blog is located at: http://endochick.wordpress.com/

Endometriosis: Facing the Battle Head-On - The Fertility Journey

2009-01-02T09:56:00.000-08:00

I'm sitting here on day 28 of my cycle, and I already feel that familiar feeling. The one of anticipation, of hope and of dread all mixed together. While I tell myself that the chances of conceiving are extremely small, each month I still develop hope that "this may be the month". And it's that very hope that is so equally devastating when the anticipation of the start of the cycle arrives. I've been here before, wanting something so bad, and no matter how much I tell myself not to get my hopes up, every month I find myself doing so anyway. Perhaps it's natural of anything that we desire so deeply, that we feel the pain more intensely when it's something that we dream of every second.

I frequently get asked something that both ticks me off and drive me onwards: "If your pain was controlled (more or less) while on your medications, why bother coming off of them to try to conceive? Wouldn't it be better to focus on being well?" If only it were so easy. I knew coming off my medications would mean that I would experience a lot more pain than I have in some time. But at the same time, if this is my only chance to try to have one more child, something that I so desperately want in my future, than there is no "right time" to come off the medications. This is a recurring and progressive disease, 2 years from now I will likely be in the same position I am right now healthwise (hopefully no worse but keeping my fingers crossed for improvement!). If I would choose to wait, the question would be "wait for what? and when?". A lot of people still don't understand this position and tend to be very critical of the choices that have been made.

In a society that still places a large emphasis on the role of women to reproduce tomorrow's society, why on the one hand am I criticized for making this decision, but on the other hand I am criticized if I would have made the decision to stay on pain meds (aka "being selfish")? Why is it that we have to live this double-edged sword? It doesn't effect my self-concept directly, I know that I contribute a lot to today's society, both in my role in the endo community and my role as a social-worker. It just really rubs me the wrong way when people have to live in a "damned if you do, damned if you don't" world.

Is a possible explanation for this double-edged sword related directly back to our illness? After all, there is nothing more that society fears than suffering, illness and pain. Not so long ago, doctors used to recommend forced sterilization for those suffering from mental illness or developmental delays for fear of passing these conditions along to others, Is this why the message to us with this illness is one of ignorance and lack of knowledge? If they solve our "infertility issue" then we just might breed the next generation of people living with chronic illness? Is it really this political?

I've experiences the political pregnancy issue first-hand again this past Christmas. One of my old colleagues was having a Christmas lunch with the rest of our work team, and asked whether I had any plans for children in the future. What are you supposed to say in front of those you work with? My quick answer was a shake of my head in the negative and a "it's likely not a possibility". Why do we have to skirt around the issue? Why couldn't I have said "Thanks for asking and I'm not giving up hope but I've just had two consecutive miscarriages"?

So now that my cycle time is fast approaching, I have a strong feeling that this isn't going to be the month either. I have a pretty good way of telling; I have endo cells that are located in my torso muscles that darken with each approoaching cycle, to recede a bit once I restart. Now if only I could resolve myself to really not get my hopes up at all...

Thinking the best of thoughts but trying to expect nothing,
Melissa

Endometriosis: Facing the Battle Head-On - Introduction

2008-12-31T12:05:00.000-08:00

Welcome to my first attempt to start a blog!

My name is Melissa, I'm a full-time social worker holding a degree in psychology and social work, as well as attending many certificate courses throughout my studies.

In June of 2001, I finally learned that I had a disease that for years doctors attempted to insist was in my head; endometriosis. Since that time, I have been diagnosed with stage 1A uterine cancer, a fibroid (myomectomied during lap #2), Inflammatory Bowel Disease, Interstitial Cystitis, fibromyalgia, and the latest one, rheumatoid arthritis. While it is nice to have names to finally call all of my symptoms, it often leaves me wondering what's next on the horizion. Whatever does happen, I know that after all I have been through so far, I do have the strength to make it. Welcome to my journey of battle against multiple painful illnesses (the symbol is the light green ribbon for chronic pelvic pain awareness).

I was 12 when it all started with my very first period. I had always been educated through the sexual education health classes that women have cramps, but these were anything but simple "cramps" and the suggested Midol for treatment didn't touch the pain. We were also told that we didn't ever bleed as much as we thought we did but meanwhile each month I would end up with lower and lower iron counts. Those were the first seeds of doubting my body's screams that were sown for me. So when my cycles started at the age of 12, I thought to myself that this was the "new normal".

My cycles would be 3 weeks in length or more, oftentimes with only a few hours to a maximum of a few days between the endo of one and the beginning of another. I had a really good relationship with my (now ex) family doctor at the time, who always was pleasant to me. I complained to her about the symptoms and was re-affirmed that everything was normal, and that we would just try me out on birth control pills to try to regulate the cycle. The pills were of no help. By this time I was starting to miss quite a bit of school, especially during my period time, and my friends were beginning to notice that I couldn't keep up with them due to my physical limitations. It's hard to feel like socializing when all you want to do is curl up in bed and cry.

One night, when I was 13, the pain hit especially hard, leaving me unable to speak or focus due to its severity. That was my first ER trip and it was December 23, 2002. The surgeon on-call decided that it was my appendix, and I was rushed through for my first of what would be several surgeries; an appendectomy. Looking back I believe that if the doctors had known/wanted to look for endo, they would have seen the abdominal area riddled with the cells at that time. My symptoms never changed since they started, only developing new ones and adding to the intensity of the older ones. I did not improve after the appendectomy, with the exception that the low-grade fever I was running disappeared.

The very next month I was into the ER again, which was to become a regular occurrence. They did the bloodwork, the ultrasound and not seeing anything, pumped me full of pain drugs and sent me home with orders to follow-up with my family doctor. My family doctor switched my birth control pills to a different brand. When that didn't work, she shortly became my ex-family doctor after saying to me "I could do an exploratory surgery on you but you wouldn't want to put your family through this would you?". In retrospect, perhaps if my family knew early on what I was going through it might have also saved them a lot of pain and frustration. Meanwhile, it was back and forth to the ER.

One of the paedetricians that I had start treating me did a whole bunch of testing on me to determine that "nothing" abnormal was happening. At 16, I was referred to my first of 3 gastro-intestinal specialists who did a colonoscopy. This showed a few pre-cancerous polyps that were removed during the procedure. That didn't fix the problem.

I went away to university for my psychology degree at the age of 19. I became pregnant much to my surprise, but had a late 2nd term miscarriage. The doctors on campus said that it was due to the umbilical cord attaching to a site of scar tissue within my uterus. As the baby grew, the placenta detached leading to the miscarriage. There was no explanation given except that perhaps the scar tissue was caused by an STD, even though I was checked for this and came out "clean". I sought treatment for the unending pain and heavy bleeding from the on-campus doctors throughout my degree.

Following the miscarraige, I was given a shot of Depo-Provera to help with the heavy bleeding and to regulate my cycles. No such luck. I will never do an injectable medication again. I experienced extreme nausea, dizziness, mood swings (pretty bad crying jags mixed with rage), convulsions, and migraines. The bleeding even increased to the point of needing to have a few blood transfusions. At one point the on-campus doctor had suggested having me checked for endometriosis and ordered a trans-vaginal ultrasound during this whole ordeal. I didn't know enough about endo at the time to know that you couldn't see it on any of the imgaging tests. It did show quite a bit of fluid in my peritoneal area, which is one of the indications of endo. In short, that one shot of Depo-Provera that is supposed to wear off in 3 months, took 8 months and ended with me requiring a D&C to stop the bleeding.

Around this time, I started having recurring urinary tract infections, almost monthly. More pain, and more time spent away from my classes. My grades suffered and I was put on academic probation at the end of my 2nd year.

In 2002, I developed what appeared to be another bladder infection which progressed to a kidney infection. Round after round of anti-biotics were taken between November and February 2003 when I got in to see the first of 3 urologists. The symptoms would slightly improve and then come back full throttle after a few days off the anti-biotics. A CT Scan was done which showed that my left kidney's blood supply had been cut off due to a growth. The urologist said that I needed a gyn to have a look, which I didn't understand at all at the time why a gyn would need to look at my kidney and which took another month to get into. In June 2003, I had my first lap.

I was working my first counselling job at the time, although by this point in the journey I had already taken a short-term leave to deal with the kidney issue, followed by a long-term leave when things didn't improve. I missed a lot of work during a critical restructuring time. When I came back, it felt like I should have been wearing a sweater with a bull's eye on it. It was a week before I was given my walking papers. I had overheard one of the directors of the organization saying "Melissa needs to grow up and realize that we all go through the same thing". If I had had the energy at this point I would have likely taken them to court.

Things did not improve following that first lap. In fact they may have gotten worse. I started hemorraging the day after, and after making sure at the ER that I was okay, I followed up with the gyn who did the surgery. He said to me "You have stage 4 endo, what would you like me to do about it?" That was just enough to set me off on a rampage to find someone who would help me. I was prescribed percocets, demerol and MS Contin for the pain. This wasn't helping all that much. One of the doctors that I saw at the ER prescribed me Danazol. I took this for 6 months in hopes that it would help me to have a child once I was done with it. The Danazol may have set off my fibromyalgia as I never had pain running throughout my entire body such as I developed after taking this medication. The Danazol did stop my periods but not the pain.

After no fewer than 7-8 early miscarriages, I finally managed to have my son. The 6-7 gyn specialists that I saw following that disastrous meeting with the first gyn, all suggested that the pregnancy would help to cure me. I heard such comments of "If you were married, I'd tell you to have a baby, but since you are not, how about a hysterectomy?" It wasn't as though it was my choice to control whether I could even get pregnant and carry to term in the first place! From the start of the pregnancy, I found out at 4 weeks along, I was put on bedrest. I went into early labor 3-4 times throughout the pregnancy, but managed to hold on to 41 weeks.

I was getting very depressed about going from doctor to doctor to try to find answers, so I dove into the research area myself. I learned more about the "endo diet" and read several nutritional books to educate myself on the role of nutrition in maintaining or creating illness. I read a lot on Oriental medicine, specifically different herbal approaches for symptom management. I did acupuncture and massage therapy treatments which provided only minimal assistance. I did feel better though when I followed the "endo diet" strictly.

I had found my first endo specialist during my pregnancy with my son. I had lap #2 three months after giving birth. It was a 6 hour surgery where they had to do a bowel resectioning due to the endo and adhesions. The endo specialists couldn't believe that I managed to conceive and carry to term with the endo, the fibroid (myomectomied) and the stage 1A uterine cancer that was found. I went back on Danazol for the next year as the uterine cancer required estrogen and Danazol was one of the "easier" medications to eliminate the estrogen. I had repeated D&C's to remove the cancer cells and help to build a new "healthy" endometrium.

Still the pain never stopped. In March 2005, I had lap #3 done by a different endo specialist. It was also an intensely long surgery, and he also did a LUNA (Laparoscopic Uterine Nerve Ablation) at the same time. Afterwards I tried different brands of birth control pills again, but it never worked. I tried the Nuva-Ring but started to swell in places I shouldn't be (I could barely get the thing out!), and also had heart palpitations and dizziness on it. I had a Mirena inserted for the past 3 years. The Mirena helped with the heavy bleeding once I stopped the initial bleeding of 6 months after having it inserted! But then my cycles started to get heavy again. My endo specialist put me on Arimidex and Micronor to go along with the Mirena. I did the three medication combo for one year, just stopping this past September.

It should also be noted that I have sought the help of pain management. My first two pain management doctors were not successful in treating my pain nor in treating me like a human being. The first doctor suggested that it was all in my head, despite having the endometriosis diagnosis at the time. The second pain doctor seemed eager to help me, however when I didn't respond to his treatment cocktail (fentanyl patches, percocets, NSAIDS, Neurontin - I can't take NSAIDs and I refused the percocets after I found that they weren't working either due to a tolerance issue), he had the nerve to tell me that my pain was related to being a single mom and not to any specific pain issue. My third pain specialist, the current one who I found all on my own, has been a lifesaver. He put me on Lyrica and Cesamet (Nabilone) with Sativex for breakthrough pain. Once the medications were in my system, my pain levels went from an average 8-9 down to a 4-5. He treated my trigger points with injections which minimized my migraines. I was able to function again and work my 10-16 hour days.

Throughout this journey I have seen many specialists and received many different diagnoses. I went to a gastro guy who did a colonoscopy, a rectosigmoidoscopy, an endoscopy, a barium enema and a CT with contrast all to come out and say "I think it's an Inflammatory Bowel Disease". Since I was awake during the procedures and saw the pictures on the video, I'd have to agree, it does look an awful lot like Crohn's, but they weren't able to determine which disease it actually is.

I have seen a rheumatologist who did a trigger point test placing specific amounts of pressure on different "known" painful parts, and determined that I have fibromyalgia. I recently say another rheumatologist who did a bone density scan and said "rheumatoid arthritis is what is causing the severe pain and popping out of joint feelings in your right hip".

I have seen several urologists and have had 3 cystoscopies. They found internal bladder endo, and Interstitial Cystitis, the painful breakdown of cells that line your bladder.

I have seen a nephrologist, there is no hope for the left kidney, but there is no point in removing it through an unnecessary surgery since it isn't causing me harm anymore.

I have seen a chiropractor, it didn't help. period. Not to mention it was expensive!

I have had mixed results with an acupuncturist. The first time i had a lot of relief, so much so that I cried. The second treatment was very painful and the third treatment just didn't do anything for me. I couldn't afford to keep going back with such mixed results.

I have seen a hematologist for my anemia, I was put on liquid iron which did help. My iron levels bounced back and I no longer need to be closely followed.

I have seen a massage therapist. This helped quite a bit with loosening up some of the adhesions.

This past August-September my boyfriend and I have decided that the time has come to try to conceive. I went off all my medications. So far, I have had another two early miscarriages. I don't know what the future will hold for me, but I am determined to not let this disease become "me". It is a part of who I am, no more and no less. I have accepted that it's here for a long time and have actively set out to find ways to help deal with it.

For the past 7 years I have moderated an endo support group with close to 1000 members. I provide my knowledge learned from experience and my research into the disease. I also try to help women to access the best specialists in their area who are knowledgeable about this disease, as well as supporting them emotionally on their journey. This is one small thing that I can do in order to cast a positive outlook on my negative experiences. This disease may have hurt me emotionally, socially and physically, but it has also provided me with the gift to help others. For that alone I will always be grateful. If you or a loved one has this illness, please consider joining.