Coping: Living a Life with Endometriosis

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

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

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.