The Trouble With Endometriosis Research

... is that so much of it isn't about the questions that matter most to patients. Chandler Marris takes on the latest example, a study that found a correlation between low BMI and ednometriosis. It's funded research into reproductive health--yay! But, as she points out, it does little to fill in the most pressing gaps in our knowledge about endometriosis:

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.

Speaking as an endo patient, I share Chandler Marris' frustration that these questions don't seem to get priority when it comes to funding. It's not that I don't appreciate all kinds of research into women's health, and it's not that I'm not grateful to those who work on endometriosis-related research. I know it's difficult to get funding at all, and (speaking as an academic) I'm familiar with the phenomenon where "safe," small projects are more likely to get funding than the ones that have less predictable outcomes, or the potential to become more expensive.

But, hey, funding agencies: isn't it time to put a premium on diagnostic and therapeutic questions? Because I very much identify with her final sentence: "If ever there was a disease that needed brash innovation, endometriosis is it."

In other words: she and I both expect more.

[Note: Not all of those with endometriosis, or affected by these research priorities, are women.]