Chapter 41: Funding and Research

Note: I apologize for the brief break. I was doing a home renovation project and then I got my second period since January and it kind of knocked me on my ass. I missed a day of work because of it, which freaked me out. I am better now mentally and physically. I hope this one was just a fluke. The swelling, cramps and nausea were not fun. At least the flow was manageable!

Recently, Rep. Abby Finkenauer of Iowa revealed that she has endometriosis. She planned on fighting Congress for more money to fund research. While I had some issues with her initial announcement, I was happy that she was willing to use her voice to fight for us in the endo community. Her crusade to double funding was so necessary because even though endo affects 1/10 women of reproductive age, it is one of the least funded by the National Institute of Health. On June 1, the House of Representatives approved an amendment to double funding from $13 million dollars a year to $26 million dollars annually starting October 1. You can watch Rep. Finkenauer's full speech here.

With such limited funding, doctors still have no idea what causes endo. There are only 200 deep excision specialists worldwide, with 200 million women worldwide suffering from this condition. The odds of finding a doctor with the knowledge to help you are not good. I was one of the lucky ones, and I'm still not completely convinced it's gone. That's why the following story is especially infuriating.

In 2013, the Journal of Fertility and Sterility published a study called Attractiveness of women with rectovaginal endometriosis: A case study. They concluded that out of 100 women studied, women with rectovaginal endometriosis were judged to be more attractive. They had larger breasts, a leaner silhouette, and an earlier coitarche (age of first sexual intercourse.) It took 7 years for this disgusting study to be retracted. SEVEN. YEARS.

There are so many issues with this study. First of all, who cares if women with endo happen to be more attractive? How does that help anyone? Second of all, attractivness is such a subjective description. Third of all, do I want a doctor who is digging around my vagina thinking about whether they find me attractive? No. I want them to be professional and I want them to help me.

Also, women with rectovaginal endometriosis have a very severe form of endo. Usually this means they have digesitve issues. Of course they're "slender," they're probably shitting their brains out on the reg. But if it makes them more attractive to the authors of this study, who cares, right?

This study was conceived in 2012. Not 1912. Not 1812. No one along the process of proposing it or submitting it to journals thought there was a problem with it. No wonder women often question the quality of care they receive. The medical community needs to do better and be better than this.