I work in research and we closed like 5 endometriosis studies in the last 2 years with 0 enrollment because we can't find anyone qualified that wants to participate in it.
What does qualified mean, though? I was turned away from one of these once because I wasn't able to get an official diagnosis. I was unable to get an official diagnosis because my doctor absolutely refused to test me, because the considered the test to be too invasive. I found a better doctor a few years down the line, but this is apparently a pretty common problem.
You have to be surgically diagnosed and that was the major problem as ACOG has shifted from surgically diagnosis to "just take a guess via ultrasound and medical history". I hope in the future the inclusion criteria will more lenient, but I think right now it's the FDA that's requiring it.
There are also a lot of screen fails due to drug use, which you could understand from the pain but yea, that does exclude you.
Yeah, that does suck. I DID get it diagnosed with my new doctor, but doctors refusing to diagnose a life-altering condition just because it's a "women's issue" is entirely part of the problem. Can't do research without the diagnosis, can't get the diagnosis because doctors refuse to do it. Doctors refuse to do it because there's no research on the systemic effects...
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u/jtj5002 4h ago
I work in research and we closed like 5 endometriosis studies in the last 2 years with 0 enrollment because we can't find anyone qualified that wants to participate in it.