Saturday, October 6, 2012

Myths and Facts of Endometriosis, Part II

The last article received a lot of view, so I am hoping that means this topic is a helpful one! If anything, it tells me that there is good reason to cover more of these. 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!


Myths

1. Endometriosis is Very Rare
  • Endometriosis is the most common gynecological disease out there. Prevalence estimates run anywhere from 7%-10% of the female population (1). 
  • Prevalence of endometriosis is high in women with pelvic pain. For example, in a study of female adolescents with persistent pelvic pain, 70% were successfully diagnosed with endometriosis (2). 
  • Despite how common it is though, many people have never heard of it; not even once. This unfamiliarity is unusual, considering its high prevalence. To put it in perspective, consider the prevalence of commonly known disorders/diseases: 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. Why is endometriosis relatively unknown in comparison?
  • One hypothesis is that it this is partially due to cultural norms discouraging women from complaining about reproductive pain. Even if that pain is beyond 'typical'. While women are encouraged to share relatively minor pains and frustrations, many cultural norms discourage expressing severe pain or hardship. Particularly regarding pains associated with 'reproductive functions'. These pains are largely considered 'part of being a woman' and something to be endured (3). Consequently, many women do not speak out or are afraid of having their fears/discomfort downplayed. And without proper reports of endometriosis pain and symptoms, the severity, disruptiveness, and extensiveness of endometriosis goes unheard. 
  • The stigma of 'grossness' can hinder public discourse and awareness of an illness. Put simply, disease attractiveness can affect its attention. Diseases and disorders with relatively 'clean' symptoms are commonly discussed and campaigned for. Unfortunately, embarrassment for messy or unnattractive symptoms can reduce the willingness of patients to share their experiences. For an easy example, consider the difference in awareness for colon cancer and breast cancer. Somehow, I do not imagine 'Think Brown' would experience as much success...
  • Additionally, there is the problem of a somewhat 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 consequently ignored. Unfortunately, even if women with endometriosis are communicating to doctors and media that they are in immense physical/emotional pain, the problem does not receive the acknowledgement/belief it deserves (4).
2. A Hysterectomy Cures Endometriosis 
  • Everyone with endometriosis has probably experienced pressure from their doctor(s) to get a hysterectomy (5). 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 (6). 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. 

Facts

1. Endometriosis is caused by Environmental and Genetic Factors (see Causes of Endometriosis
  • An important thing to remember with endometriosis is it is caused by an interplay of heredity and environment (7). Risk factors are still being studied and questioned by the medical community.  
    • Women with relatives with endometriosis have a higher likelihood of the illness (8). Women with a sister/mother with endometriosis are 7-10 times more likely to have it themselves, and there is gene linking research that has identified certain genes as problematic for endometriosis (particularly immune and reproductive genes). These studies show that environment alone cannot account for endometriosis development; there are genetic factors involved.
    • 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). Delays in diagnosis and limited availability for treatment also limit research (9). Survey studies, which study correlation of factors, are also difficult due to the extent of confounding factors. Confounding factors refers to things that are not readily apparent and can interfere with research (e.g., when studying drunk driving accidents, 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.  
    • The combination of genetic and environmental factors support that we should work to identify which specific toxins are especially hazardous and high risk for illnesses such as endometriosis. If we could better reveal what exactly contributes to endometriosis, we could better campaign for the reduction or elimination of the pollutant. 

  1. Gruppo Italiano per lo Studio dell'Endometriosi. (1994). Endometriosis: prevalence and anatomical distribution of endometriosis in women with selected gynaecological conditions: results from a multicentric Italian study. Human Reproduction, 9(6), 1158-1162.
  2. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  3. Krotec, J.W., & Perkins, S. (). Endometriosis for Dummies. 
  4. 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. 
  5. Wellberry, C. (1999). Diagnosis and treatment of endometriosis. American Family Physician, 60(6), 1753-1762. 
  6. 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. 
  7. Dun, E.C., Taylor, R.N., & Wieser, F. (2010). Advances in the genetics of endometriosis. Biomedical and Life Sciences: Genome Medicine, 2(10), 75. 
  8. Simpson, J. L., Elias, S., Malinak, L. R., & Buttram, V. C. (1980). Heritable aspects of endometriosis: I. Genetic studies. American journal of obstetrics and gynecology, 137(3), 327-331.
  9. Mcleod, B. S., & Retzloff, M. G. (2010). Epidemiology of Endometriosis:: An Assessment of Risk Factors. Clinical obstetrics and gynecology, 53(2), 389-396.


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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 and happiness.