The Mighty Logo

We Need to Take Endometriosis More Seriously

The most helpful emails in health
Browse our free newsletters

My period started when I was 12 years old. I’m 22 now. For a decade, my cycles have caused debilitating pain, to the point that it interferes with my ability to sleep, go to work, do schoolwork, and sometimes even stand up.

I remember first knowing something was wrong when I was about 14 or 15 and had a period that lasted for three months straight. It made me anemic, and then I had another one two weeks after that one ended that made me pass out. The anemia was what finally got me sent to a gynecologist, who put me on a medication that stopped my periods, and everything was great — until it wasn’t.

I had to be temporarily taken off of the medication while I was in the hospital for something unrelated, and when I went back on it, it didn’t work anymore. Instead, I was bleeding for four days every week. Bleeding for four days, not bleeding for three. It was like clockwork — but it was awful.

I went back to the gynecologist, who took me off of the medication, which then made the pain even worse. We then went through multiple different potential treatment options, every single one of which failed. At some point in the midst of this, she told me she thought that I might have endometriosis. I then had to switch gynecologists, and my new gynecologist I saw believed I had endometriosis too, and wanted to refer me for an ablation (she can’t do surgery because she’s a nurse practitioner) before putting me on Lupron. The doctor she referred me to, while also agreeing that it seems like I have endometriosis, didn’t want to do the ablation, and suggested we try Lupron first instead. I’m on Lupron now, and it’s caused such horrendous side effects that I’m not sure I can stay on it.

So, why am I telling you all of this detailed information about my period?

Because endometriosis is a problem that the healthcare system does little to nothing about.

Currently, my treatment options are as follows:

1) Stay on the Lupron for a bit longer, despite the side effects, and then see if any of the options I had previously failed will work after having had Lupron.
2) Find a doctor willing to do an ablation.
3) Get a hysterectomy with removal of my ovaries.

As I said above, I am 22 years old. I’m getting ready to apply to master’s degree programs. In no way am I in a position to have children right now. But I also don’t want to lose that option — assuming the endometriosis itself hasn’t taken that too. There’s also no guarantee that a hysterectomy would fully solve the problem. Still, ablation is a temporary fix, and having surgery after surgery can become incredibly expensive, especially for someone like me who doesn’t even make a living wage. I was hopeful the Lupron would be a good option, but after discovering that if I miss a single dose of the add-back hormone replacement pill I’m on, I have projectile vomiting, and even with that pill, I’m so nauseated that I can barely eat — that’s clearly not a great option either.

Endometriosis impacts approximately 10 percent of women, meaning about 190 million people experience this debilitating pain condition, many of whom are in the exact same position I’m in. Not ready to be permanently forced into menopause, not in a position to pay for repeated surgeries, but nothing else is working.

The harsh reality is that medicine is sexist and we don’t put nearly as much funding into what is considered a “women’s issue.” This runs back to the stereotypes that have somehow persisted since hysteria was considered a clinical diagnosis. It’s more than likely that there could be better options to treat endometriosis, but we aren’t truly trying to find out.

As if this isn’t bad enough, many are shamed into being silenced when they attempt to reach out for support, cut off by looks of discomfort or even disgust. This makes endometriosis not just a debilitatingly painful condition, but a painstakingly isolating one as well.

It doesn’t have to be this way. We could treat people with compassion. We could fund research. We could fight for better treatment options. We could believe women when they say they’re in pain without minimizing it or dismissing them. Until those things happen, though, I refuse to suffer in silence.

Getty image by pticelov.

Originally published: September 6, 2021
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home