“A white woman’s disease”
It has been said that endometriosis is “a white woman’s disease.” The disease of a white woman that is single, has no children, and with a career. You know why? Because it is a white woman who would be able to afford to be treated. I recently watched a documentary on endometriosis and a doctor bashfully admitted this is a phrase doctors would haphazardly throw around in the 70’s. In looking for treatment for endometriosis, I’m finding this to be true. Well, not the white woman part because this is something that can affect people of all backgrounds. But it is expensive.
First of all, to be treated appropriately you need to see an endometriosis specialist. There really are a handful of doctors who specialize in this and because it is highly specialized and niche, the prices can be high too. Unfortunately, most insurance don’t cover excision surgery, which is the gold standard surgery to diagnose and treat endometriosis .
I found a list of doctors that specialize in endometriosis from a Facebook group I belong to. It has been a great lead. I took that list and have been doing my own research on each doctor. I have only found one that is exactly what I am looking for. She uses both Western and Eastern medicine for a holistic approach. I read her website up and down and was like, “Yes! Sign me up!” I then took to yelp and read reviews. Someone mentioned the initial consultation was $500. Then, she needed labs done, which was another fee and had to come into the office to have them interpreted, another visit. Plus, parking was something like $20 an hour. OMG! My brain started calculating how much all of this was going to cost BEFORE even getting to the surgery. Can I even afford to get treatment? This doctor is out of network for me so much of it would likely to be out of pocket.
New plan. I’ll find a doctor from the list that takes my insurance. I found three in the LA area. The first doctor I found is nearby and seems okay. But…a recent review. Just a month ago someone reported her being “condescending, lacks compassion, and poor bedside manner.” I saw a couple other similar reviews. Maaaybe I’ll interview her if the other two fall through, but I’m not with it.
This condition ,or any other condition, requires the doctor to be compassionate, especially if we will be talking about surgery and my fertility. To be honest, I’m also nervous about my provider not being a woman of color. I think about how the healthcare system in this country treats Black women. Doctors and other healthcare professionals are notorious for not validating Black women’s pain, symptoms, and health concerns. Couple that with a condition that is widely misdiagnosed, and we have a problem.
I found a Black woman who specializes in endometriosis and takes my insurance. She is a bit farther out but worth the drive! I call to make my appointment and am re-routed to the gynecology department in my area that does NOT have endometriosis specialists. I explain my expectation and the woman on the phone assures me they will take care of me. I’m not convinced because general gynecologists are not trained to treat endometriosis. They are often instructed to put a woman on birth control and manage the symptoms. But I don’t want a Band-Aid. I want the root problem to be treated. I made this clear to the woman taking my call and accepted the appointment.
I’m hoping I’m terribly wrong and will be pleasantly surprised when I meet with my gynecologist. That I’ll be met with someone who has a deep understanding of endometriosis and treatment options outside of birth control. I’m hopeful. But I’m not going to lie…I’m still skeptical.