Monday, October 1, 2012

Myths and Facts of Endometriosis, Part I

Before I begin this post, I wanted to quickly inform those of you about my progress with the cognitive therapy for insomnia. I've suffered awful insomnia since I was little, but getting so sick swung it into overdrive, and I became completely dependent on sleeping medications for any rest. A therapy that was meant to take four weeks has been in progress for about six, but I am finally beginning to see some improvement. If it continues to improve, I will do a post on how to conduct this therapy for yourself. Many people (especially women) suffer from insomnia without really knowing what to do for it. And with endometriosis, that is extra frustrating, because you are tired all the time but cannot sleep! But maybe I've finally found some answers--I look forward to posting successful results!

Now, here's the good stuff. Because of heated political proceedings and general misinformation surrounding disease, there seems to be a great deal of endometriosis myths floating around. Some are old, some are new. Some have been said by people who should know better and some are just gaining steam because social media allows incredible dissemination of thoughts without requiring any sort of credence. Hopefully, this will be a chance for me to address some of the rumors going about and give some proper information. I will address the issue, the facts/myths surrounding it, where it came from, and comments/research/anecdotes into the actual issue it may reflect. 


1. Endometriosis is caused by __________
  • Abortion: Apparently, this has been an especially heated issue because of some misunderstandings between republicans and democrats this current election. At the Democratic National Convention, Ms. Bruce discussed how treatments at Planned Parenthood made her daughter possible, because previous doctors had dismissed her endometriosis symptoms and not properly treated her(1). Now, because everything must be turned political, opponents of planned parenthood began spreading the 'fact' that elective abortion can cause endometriosis*. Now, thankfully, I have not been able to find any remotely credible sources spreading this 'fact'. It seems to be have largely been distributed by word of mouth. Yet, I did find some 'expert medical advice' sites describing the same thing(2); here, she says that the scraping of the uterus allows entry of endometrial cells into the muscular lining of the uterus. It does seem to be a believable misconception. 
    • Where does this misconception come from? Honestly, it's difficult to say, because there is pretty much zero research linking the two. My guess is that people have confused spontaneous abortion with elective abortion, and have also confused the order of endometriosis and infertility issues. Endometriosis does cause scarring of the abdomenopelvic cavity organs, especially reproductive ones. And this makes carrying pregnancy to full term sometimes difficult/impossible. The fetus can struggle to attach, develop, or maintain growth. When a miscarriage happens, this is considered a spontaneous abortion. Thus, there is a connection between endometriosis and spontaneous abortion, but even then, there is an order to the two issues. 
  • Teen Pregnancy: Wow, I never expected to see a myth like this. Because of the ridiculousness of the idea, I'm going to focus more on how it completely violates the biology of endometriosis, and then explain what may have given the idea ground. Many modern theories about endometriosis involve the idea that delayed pregnancy is involved with the higher prevalence of the disease. From an evolutionary standpoint, women began having children young, with frequent births/miscarriages throughout their lives. Their bodies did not evolve to have frequent periods and a long period of time between menarche and the first child birth. By comparison to today, we wait many years, and even age 18 is considered very young. These additional menstrual periods (which are actually extremely traumatic events to be happening on a monthly basis) give additional opportunities for proliferation and further damage by the disease. Giving further weight to this hypothesis is the evidence that often women get some relief from endometriosis by having children (i.e., pregnancy). Now, this relief time may vary from woman to woman, but there is usually a temporary relief of symptoms following a full term pregnancy. 
    • This myth, though somewhat present prior, was recently brought to attention by Dr. Satya Narayan, a clinical researcher(3). 
      • In his article, he says that risk factors for endometriosis include "...teenage pregnancy, poor personal hygiene, low body immunity, prolonged mood disorders and severe hormonal disharmony". The major hot buttons including teen pregnancy and poor personal hygiene. 
      • Now, in this doctors defense, let me explain how case studies work: they analyze individual cases, not overall populations, to draw ideas on a disease. However, most case researchers acknowledge the blatant lack of sampling in their research and use it primarily for commentary value and a launching pad for more extensive research. Issues arise when they talk about their research as if it is 'definitive', which this man did. He even says in his article that this was 'his experience'. To me, it seems egotistical and dangerous to regard personal patient experience as a reliable resource for a highly variable disease. 
      • Additionally, he seems to disregard the golden rule of 'correlation does not equal causation', meaning that, just because two events (e.g., endometriosis and hormonal disharmony) co-occur together, does not give any information on how the two are connected. You cannot draw any ideas on which causes the other, making it a completely unscientific statement to draw any conclusions from. Especially when those correlations are built on single case data. 
      • The fallibility of his ideas are supported by the widespread rejection and falsification of his conclusions. I would advise the doctor to better follow the standards of medicine, and to refer to experimentation and proper research before drawing extreme conclusions.
2. Endometriosis does not affect young women
  • This is not a myth I see everyday, but it is one I do see too frequently. This misconception that endometriosis is a disease that only appears later in life. I am only 23 years old and have had three surgeries and a Lupron treatment (the lovely hormonal chemo that ruined my life). Often, when seeing an unfamiliar doctor, their first comment is, "you seem way too young to have such severe problems with endometriosis" or even, "you're too young to have endometriosis". 
  • Where does this myth come from? 
    • It could possibly be because the longer endometriosis goes untreated, the more severe it becomes, and the more likely a woman will be seen for surgery (later on in life). (*explanation: I am referring to the cumulative effects of scarring and damage, not the increased growth of endometrial tissue). 
    • It could also be because our society has difficulty believing younger people's complaints (personal e.g., I had asthma attacks in gym at school and was told by the teacher to 'stop telling lies'). 
    • Another possibility is that younger women have yet to realize just how abnormal their menstrual life is. I had my first period at 11 and it was two weeks long. I had no idea that most girls my age had not even had one or had 2-3 days worth. It took me many years to realize that my symptoms were much more severe than 'average'. And no doctor was really concerned by my extreme reports of pain because I was not 'old enough' to have serious issues.
  • Endometriosis does affect young girls. An awesome 1997 study by the Children's Hospital in Boston worked to disprove this myth exactly. Many doctors use conventional therapy to treat chronic pelvic pain in adolescent girls. This study took a sample of 32 such patients, performed diagnostic laparoscopic surgeries, and found endometriosis in 70% of the patients(4). 
  • A study by Laufer et al. (2003) also supports that children and adolescents can develop endometriosis, even prior to menarche (a woman's first period). Girls as young as 8 years old were diagnosed and treated for endometriosis.(5)
  • If adequate progress is to be made on this disease, the first step is proper diagnosis and identification of those suffering. I've written before that earlier treatment results in better outcomes. If doctors were better educated on the prevalence of endometriosis in children/adolescents, or more willing to admit the possibility, they could be saving the well being of these women. After, all, if 7-10% of women have endometriosis  and it can develop around the earliest of periods, it would be better to identify this significant number of girls/women as early as possible. 

1. Endometriosis pain is not 'normal' period pain
  • Whereas the slight pain/discomfort that can arise from a woman's monthly cycle is an inevitable part of Lovely-Miss-Mother-Nature, the life disrupting pain of endometriosis is not
    • Many doctors, friends, family members, anyone, sometimes seems eager to explain how every period is the same. Before learning to 'keep quiet', I was often given advice to 'walk it off' or 'learn to deal with it like the rest of us have'. Like many with a misunderstood disease, I have experienced some pretty insulting misunderstandings of how I am feeling.
    • Let me try to communicate how this misunderstanding can be perceived. I often sprained my wrists growing up (I loved to skateboard, but was not particularly good at it). My friends, more extreme riders than I, suffered significantly more injuries and breaks. If I had gone up to a friend with a caste for a shattered arm, showed him my bruised wrist and said, "you just need to tough it out like me"... that is pretty much how this sort of talk feels. 
    • A five week period does not feel like a five day period. Pain that makes you pass out or vomit or collapse is not the same as 'Advil' pain. Heck, even Advil pain could be a sign of minor endometriosis (which is more common than the more severe types). But needing a hot water bottle and needing a bottle of morphine is a completely different level of pain. It's not the same, nor is it normal, nor should it be considered normal. 
  • Whether the pain is tolerable should not be a viable measure of the presence/severity of endometriosis
    • Endometriosis is an extremely complicated disease in regards to its effects on pain. The extent/severity of endometriosis has little to do with the pain it inflicts(6), but the pain is a valuable indicator of the presence of the disease. If a menstural cycle is painful enough to disrupt daily functioning, even if it can be borne (i.e., forcing oneself through the pain), it is a good sign that something is wrong with a woman's reproductive organs and should be addressed. After all, various studies have shown that endometriosis is present in 2-72% of cases of chronic pelvic pain, with averages hovering around 33%(7). 
    • (This is an anecdote for myself here, but it seemed relative/valuable. Skip over if you wish!): My pain is a complicated topic for me. Something I've come to discover is I have a very high pain tolerance. I have played/competed in extreme sports my entire life. I have broken, dislocated, bruised, cracked, sprained, twisted, etc. pretty much every limb/joint/spot on my body. I have had reconstructive shoulder surgery. I have even needed plastic surgery, after tearing off my chin, to restore part of my face. I have learned to tolerate pain to the extent that my lifestyle required. Even though endometriosis pain has been so very different from this standard injury pain, I have still tried to force myself to cope as much as I can. I resist medications, rests, and treatments as long as I can because I do not want to be dependent on them. I have learned to live with a near constant throbbing in my lower cavities, painful movements, and difficulty with daily bodily functions, because that is how I cope. But this does not change that the pain is there or make it normal or make it acceptable. It drives me nuts to have doctors tell me how I should be feeling, because, really, it is up to my body and my brain to decide that. Even worse, if they completely ignore the factors of neuropathic pain and only evaluate inflammatory pain, they are dismissing a lot of the pain related to this disease. Research has shown, again and again, that severity of endometriosis does not correlate with severity of symptoms or pain. But I suppose a discussion about the dismissal of pain is for another day.

I have a fair number of myths/facts to write about with this disease, and it will be impossible to address them all in a single entry. Please check back, as I would love to explore it more in depth. Thank you very much for reading, please, if you would like any myths/facts addressed, please add them in the comments bar or email me, thank you!

*Personal Note: I am 'politically' pro-choice and 'personally' pro-life. I support the right to reproductive freedoms and medical resources, even if I would not choose it for myself (outside of medical necessity). Overall, I feel I do not have the right to judge another's choices or circumstances, I respect the right to control one's own living body, and I have seen many situations where abortion was a person's only option. I also understand that abortion is a difficult issue for many, and I can empathize that many people will disagree with me.
I am not trying to discuss the rights/wrongs of this. What distresses me, is that, out of desperation for political advantage, people are willing to disseminate incorrect/hurtful information about a disease they have no understanding of.
Endometriosis is not a political tool for abortion. People have passionate, complex reasons for the beliefs have surrounding abortion, on every side, and there is no valid reason to drag in an unrelated disease to the debate. Not only is it selfish, it is also particularly cruel to involve a disease with high infertility and miscarriage rates. It paints people with endometriosis as responsible for their illness and burdens. 

  4. Laufer, M., Goitein, L., Bush, M., Cramer, D., & Emans, S. (1997). Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. Journal of Pediatric Adolescent Gynecology, 10(4), 199-202.
  5. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  6. Vercellini, P., Trespidi, L., De Giorgi, O., Cortesi, I., Parazzini, F., Crosignani, P.G. (1996). Endometriosis and pelvic pain: relation to disease stage and localization.  Fertility and Sterility, 65(2), 299-304.
  7. Guo, S-W., & Wang, Y. (2006). The Prevalence of Endometriosis in Women with Chronic Pelvic Pain. Gynecological and Obstetric Investigation, 62, 121-130. 


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