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.