Endometriosis is More Common in Skinny Women – Woohoo!

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endometriosis
Circling the blogosphere, on every health media site, new research finds an association between body weight and endometriosis. Woohoo!  We can all rest better now that we know skinny women have more endometriosis. I’m sure the women who suffer from incalculable pain for years on end are relieved by this breathtaking bit of scientific research.

The study, conducted at major research centers, funded by the Eunice Kennedy Shriver National Institute and of Child and Human Development and by the National Cancer Institute and published in a top tier journal, Human Reproduction, marks all that is wrong with women’s health research, academic research funding and publishing. It is safe, meaningless and does nothing to further the science. And yet, it is exactly the type of research that is funded and published over and over again.

Endometriosis is an incredibly painful, chronic and ever-worsening condition that affects almost 200 million of women worldwide. We cover it regularly (see here). With endometriosis, endometrial tissue grows outside the uterine cavity and invades a woman’s internal organs, her ovaries, her colon, her bladder, even her lungs, causing great pain and destruction throughout her body.

There are no effective diagnostics, except surgical visualization. By definition, this occurs years after the disease has progressed sufficiently to see it and long after the damage of the disease has been done. Many women suffer 5-10 years before a diagnosis is made.

There are no effective treatments and so we keep recycling old medications, hoping beyond hope that somehow, magically, this oral contraceptive or that anti-depressant or perhaps a gonadatropin agonist will work and quell the growing implants. They don’t.

No one knows what causes endometriosis. Is it genetic? Environmental?  A combination of both? Is it hormonal and if so which hormones, which receptors and by what mechanism does the tissue grow?

Why does endometriol tissue grow outside the uterine cavity? The most common explanation thus far, retrograde menstruation, has neither supporting data, nor diagnostic or therapeutic utility. One would imagine that after 90 years of being the most prominent theory in the field, the one taught in medical schools, that there would be some data validating its utility and accuracy. But alas, there is not.

Instead, we have research funded and published that tells us skinny women are more at risk than our overweight sisters. It tells us nothing about why weight might influence endometriosis, nor does offer anything to help fill the diagnostic or therapeutic void that is endometriosis. No, it just tells us that there is inverse relationship between BMI and endometriosis – lower BMI at 18 years of age is correlated with higher rates of endometriosis later in life. Oh, and infertility is also in the equation. For those of us in the field and for the women suffering, this is hardly groundbreaking research that deserves funding or publication. And though I applaud the Eunice Kennedy Shriver Institute for funding research in women’s heath – they are one of the few governmental institutes or organizations that do – much could be done to improve the nature of the research funded. If ever there was a disease that needed brash innovation, endometriosis is it.

 

 

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12 Comments

  1. Hi, I am so grateful and happy that I was able to read this important article, all the info you provided here it seems essential to me. I am trying to understand my thyroid problems and is not easy.

  2. Well said!
    In this age of sound-bites, FB posts, and Twitter, I think too many researchers allow their focus to be swayed by what is most likely to be funded, published, and re-circulated… prioritizing the attention-grabbing quotient and/or marketability (often to Big Pharma) far above it’s utility to relieve the suffering and improve quality of life. We are waiting for answers and actionable insights that add value to life… not pad the pockets of those who prize profit over practicality and service. Keep up the good work in steering research toward that noble end. If we don’t publicly call them out, this trend will only continue.

  3. I have to say, being a woman with a high bmi and endo where every ailment I have has been associated to my weight this study made me want to show my doctor and say if itsbmy weight that caused my endo y dont I see more people who look like me with it. I feel like everytime I say I have endo someone looks at me like I caused it I did it to myself. I had one doctor who did say my pain may get worse as I lose weight. So from someone whos told it is her bmi that is the cause for everything this makes me happy because they may study this disease more if they know skinny “healthy” women get it. Thats just my two cents 🙂

  4. I think this is a bizarre study too, and was wondering if there was any merit to it. I now have a pretty good idea that no, it’s not really useful. Especially since I very suddenly gained A LOT of weight at age 24 and then began having endo symptoms. (I guess I throw the ‘research’ curve…) It was years before doctors saw beyond the fat chick to her pain and stopped trying to prescribe anti-depressants and instead did a laproscopy. I do really hate this disease and am glad there are PhDs such as yourself with a fresh and pragmatic point of view.

  5. Thank you Chandler for this article. I totally agree with you. Honestly it’s one of the strangest studies I’ve ever heard and I wonder how accurate it is. Cheers 🙂

  6. It looks like this was an analysis derived from a previously existing data set from the Nurses Health Study II Cohort, which is a study designed to be an epidemiological tool.

    It’s disingenuous to suggest that this study is taking money away from therapeutic research – if this grant hadn’t gone to this study, it probably would have gone to another epidemiological study on the same dataset (it looks like there were ~50 published studies last year based on the NHS dataset).

    You’re slamming epidemiology and simultaneously complaining that ‘no one knows what causes endometriosis’ – that’s what kind of what epidemiology is for!

    I have endometriosis and I’m equally frustrated by the inadequacy of current therapies (fainting yesterday while trying to get a mirena being the most recent highlight) but piling on this one study because it doesn’t solve everything isn’t helpful.

  7. Well done, that needed to be said! I’ve seen this research circulating everywhere and it’s clear we are really making strides (in the wrong direction) in endo (and women’s health) research. I found this study just as insightful as the endo makes women more beautiful study.

    1. LA, the sarcasm was directed at the ridiculousness of the research, not the disease or the disease sufferers. I think that the severity of the disease merits much better research to move the science forward and to alleviate the suffering. Some examples of research that could one day lead to better diagnostics or therapeutics include:
      Endometriosis & Neuropathy – http://www.hormonesmatter.com/endometriosis-and-neuropathy/
      Endometriosis & Migraine – http://www.hormonesmatter.com/migraines-more-common-in-women-with-endometriosis/
      Endometriosis & Vaginal birth – http://www.hormonesmatter.com/endometriosis-vaginal-birth/
      Endometriosis & Resveratrol – http://www.hormonesmatter.com/resveratrol-from-red-grapes-blocks-endometriosis/

      I don’t think linking endo to BMI merits the attention it got and hence, my sarcasm. Similarly, a study linking endo to attractiveness – covered today- should merit disdain. These types of studies do nothing to alleviate the suffering, prevent, predict or treat endo.

    2. I agree – it’s offensive. Whoo hoo?? What a poor choice of words. Pretty insensitive on your part. Good question LA “do you have endo?” And I can’t imagine anyone “thin” ever titling a negative as such. It’s like titling Whoo Hoo – higher % of fat women die of strokes! Yay! I’m very thin, not by choice and have had endometrosis for over 20 years. Interesting how heavy women always show their colors as they praise negative findings in thin women. No one knows the cause of anyone’s weight.

  8. Just found out this amazing blog! I’m 22 and endo stage IV, i had a laparotomy three months ago. I’ve been trying to workout everyday since my surgery, and i refuse to take danazol because i’m very afraid from the side effects. I’ve been living this hell since i was 16, and i’m so tired of endo governing my life.
    This blog makes me fell less alone, i know now there’s other women and i can relate to them. Thank you very much!

    1. You are very welcome. If you’d like to share your story about endometriosis, we’d be happy to post. It is important to break the silence in order to move women’s healthcare options forward.

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