Saturday, October 6, 2012

Myths and Facts of Endometriosis, Part II

Wow, many hits this past week! I am hoping that is a sign that this topic a popular one, and I hope not to disappoint anyone with today's follow up. For better or worse, there are many myths about Endometriosis, and there is plenty of material to cover. Even if I did a hundred posts, I'd probably never cover them all. But I'll try my best to cover the ones that stick out to me!


1. Endometriosis is Very Rare
  • Endometriosis is the most common gynecological disease out there. Prevalence estimates run anywhere from 2%-10% of the female population, with the average estimate around 5%. Despite how common it is though, many people have never heard of it; not even once. To put this in perspective, I'm going to list some commonly known disorders/diseases and their prevalence/incidence rates: color blindness (4.2%), asthma (3.5-5.5%), shingles (0.18%), and tonsillitis (0.7%). I could include many more diseases, but I am trying to use milder examples to prove a point. How has everyone heard of these but not endometriosis?
  • One hypothesis is that it this is partially due to cultural norms discouraging women from complaining about reproductive pain. Even when that pain is beyond 'typical'. It's something that is considered 'part of being a woman' and something to be endured(1). Thus, many women don't speak out or are afraid of having their fears/discomfort downplayed. The severity, disruptiveness, and extensiveness of endometriosis goes undetected. For example, many people would talk about having diabetes in my college courses, but no woman brought up endometriosis (even in relevant situations). It's something they often do not volunteer. 
  • Additionally, there has always been a significant flagrant attitude towards female pain in medicine. Women, more often than men, are regarded as inaccurate in their perception of pain and are less likely to receive adequate pain treatment. Women are seen as 'whiners' and are ignored. So, even if women with endometriosis are communicating to doctors and media that they are in immense physical/emotional pain, it's not received the 'believe-ability' it deserves(2).
2. A Hysterectomy Cures Endometriosis 
  • Everyone with endometriosis has probably experienced pressure from their doctor(s) to get a hysterectomy(3). I have several times over. Always with the reassurance that 'if I haven't found relief, I need to look at this long-term solution'. They are 99% certain that my pain would go away. And, up until I more seriously researched the issue, I was ready to schedule surgery. I've got to say, I was 22 years old and it was devastating to decide right then that I was never going to try to have children and would be under permanent menopause. But I was willing. Until I found out that it was unlikely that I would be undergoing a long-term solution. Especially because of my age--research has shown that younger age hysterectomies are vastly less effective at preventing future pain/relapse than later age hysterectomies(*). And, while hysterectomies do, on average, improve pain in patients, they are in no way an end-all cure. About 15% of hysterectomy patients report no change in pain and 3-5% of patients indicate a worsening in pain symptoms(4). This also ignores the damaging affects of early sex organ removal and the side effects of the consequential hormone replacement therapy. 
  • I really do not want to consider the sources of this myth. Of course, there is the research that shows that, on average, there is improvement in pain (which ignores about all the negative consequences aside from pain). I like to think that the majority of doctors believe they are making the best medical decision for their patients. I do believe that a person goes into medicine with a desire to help people. However, I have also read in places that there is a serious market for profit in performing hysterectomies. I do not want to report numbers and stats on that here, because the numbers really can't say much about the perceived motivations (assigning meaning to statistics is easy--confirming those meanings is a complicated issue). And I think it is easy for frustrated people to jump on the mob train and go wild. I just want to mention... that it is a possible money source. Look it up for yourself and make your own opinion, because I honestly can not trust my judgment in this case. 


1. Endometriosis is caused by Environmental and Genetic Factors
  • An important thing to remember with endometriosis is it is caused by an interplay of heredity and environment(5). Now, I wish I could say that because researchers know this, they also know what those factors are. Well, they don't. But here is what they do know: 
    • Women with a sister/mother with endometriosis are 7-10 times more likely to have it themselves, there is some gene linking research that has identified certain genes are problematic for endometriosis (some of those involved in reproductive tract regulation), and that environment alone cannot account for endometriosis development (the idea of vulnerability; supported by separated-at-birth twin studies).
    • Well designed environmental research is a struggle. Obviously, it's impossible to conduct a human experiment (you can not trap a child and rigorously test what toxins cause endometriosis). And when doing correlation studies, separating out what factors are involved is impossible. Confounding factors refers to things that are not included in the study (e.g., when studying drunk driving, the time of night could be a confounding factor that only includes intoxication and skill of driver). It's hard to know what may be contributing to endometriosis, so there are many potential confounding factors out there. However, there are a few established risk factors, such as exposure to environmental toxins. 
  • What can be drawn from this fact? That a woman's development of endometriosis is not something she contracted, made bad choices for, or has any real control over. It's like children that develop asthma because of an in-city coal plant. They did not put it there and they certainly did not plan on developing asthma. It just happened. 
    • What I personally get out of this statement is not only do we need to be aware of genetic risks (to catch it early) but also wish to show specific toxins are especially hazardous and unacceptable to pollute the environment with. It is extremely frustrating that I may have endometriosis because of bad decisions from a big business. If we could better reveal what exactly contributes to endometriosis, we could perhaps outlaw this pollutant. \

  1. Krotec, J.W., & Perkins, S. (). Endometriosis for Dummies. 
  2. Hoffmann, D.E., & Tarzian, A.J. (2008). The girl who cried pain: a bias against women in the treatment of pain. Journal of Low, Medicine, and Ethics, 28, 13-27. 
  3. Wellberry, C. (1999). Diagnosis and treatment of endometriosis. American Family Physician, 60(6), 1753-1762. 
  4. Vercellini, P., Barbara, G., Abbiati, A., Somigilana, E., Vigano, P., & Fedele, L. (2009). Repetitive surgery for recurrent symptomatic endometriosis: what to do? European Journal of Obstetrics & Gynecology and Reproductive Biology, 146(1), 15-21. 
  5. Dun, E.C., Taylor, R.N., & Wieser, F. (2010). Advances in the genetics of endometriosis. Biomedical and Life Sciences: Genome Medicine, 2(10), 75. 


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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health, struggles, and happiness.