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.
Monday, September 20, 2010
Wednesday, March 17, 2010
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.
Saturday, January 16, 2010
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?
Friday, January 1, 2010
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.
Friday, December 4, 2009
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.
Tuesday, November 17, 2009
*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:
Wednesday, September 30, 2009
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.