Endometriosis is a chronic condition that’s chronically misunderstood. Unfortunately, those doing the misunderstanding are sometimes medical health professionals. When I say I’m lucky to have found my gynaecologist first-go, I’m not being flippant. I did my research — read patient reviews and investigated qualifications — but so do a lot of people who wind up receiving sub-par care for this shithole of a disease.
I’ve since learned a lot more about what endometriosis is and what the industry standards for treating it are. If I had to shop for a gyno now, I’d have a lot more questions. What follows is a bunch of them.
Quick caveat: I’m not a medical professional. The following advice is the result of living with this disease, talking to specialists, and a lot of painstaking research. I’d encourage you to do your own reading, talk to your own specialists, and educate yourself about endometriosis. If you’re unsure about a course of treatment being offered to you, get a second (or third, or fourth) opinion. Doctors aren’t infallible, especially when it comes to this trashfire of a condition. But neither are randoms on the internet (like me).
The following questions are ones I’d be asking if I were shopping for a gynaecologist right now. I’m hoping they’ll serve as a jumping off point that encourages you to be proactive in your own treatment. Because, unfortunately, that’s the current endo landscape right now.
Do your research, don’t be afraid to ask questions, and trust wisely. You’re Fox Mulder and the truth is in your uterus, pals.
In 2016 I had to leave a job I loved because I was too sick to work. I’ve since had two surgeries, cultivated an essential but bank-draining team of medical specialists, and developed a truly spectacular tolerance to painkillers.
For me, Endometriosis has been a nuclear bomb dropped on my life.
Scientifically speaking: Endometriosis is a condition that occurs when cells similar to the inner lining of the uterus (the endometrium) decide they’re strong independent cells that’re gonna strike out on their own and make it big, Mama! Endometriosis growths are commonly found in the abdominal cavity of sufferers – getting up close and personal with your abdominal walls or your local organs. Some cells dream a little bigger though, migrating into organs like your bladder or bowel.
In severe cases, the inflammation from endo growths can cause your organs to stick to your abdominal walls (or each other). Think Shelob’s cave from Lord of the Rings but the web is scar tissue.
Oh but wait, there’s more.
When I was little I would frequently return home from visiting my father with raging ear infections.
I was a water baby, practically living in his pool on school holidays which served the dual purpose of a) giving me the infections in the first place and b) distracting me sufficiently from the pain that my head was about falling off by the time I raised enough of an issue to make it to the doctor.
My mother learned early that when I offhandedly mentioned something hurt, only to be distracted by a game of tag five minutes later, that that didn’t mean the pain wasn’t serious. I just had a knack for ignoring my body’s klaxons, right up until either the distractions ran out, or an emergency room visit was in order.
It’s something I never grew out of. Which is probably for the best because two decades later I was diagnosed with endometriosis.
Periods are the worst. It’s a pretty universal constant among people with uteruses. Three to seven days out of the month, our insides decide to spring clean with the voracity of a nuclear detonation and the aesthetic of a serial killer. You plug what you can and you clean what you miss, all the while keeping the whole thing to yourself because Jerry in accounting will probably make a sexist joke and Carly will judge you because we don’t talk about such things, Sharon.
Well fuck that. Not only has our collective silence led to half the population not understanding a fucking thing about the biology of the other half (something that goes from hilarious to horrifying when you realise these are overwhelmingly the dudes in positions of power btw) but it’s contributing to a culture that sees people with all the symptoms of serious medical conditions shrugging them off because “lol periods amirite??”.
I should know. I was one of them.