If you have endometriosis, you’re gonna be on the receiving end of a lot of bullshit. And I’m not even talking about the symptoms and surgeries. I’m talking about everyone and their dog asking you if you’ve tried yoga, or giving up bread, or getting pregnant, or putting pearls up your vag.

One of the more pernicious pieces of endo misinformation is that a hysterectomy will “cure” us. Nevermind that doctors that peddle this (major, life-changing) surgery often neglect to properly remove current endo growths, leaving them to shed and spread as normal. The studies are conclusive: a hysterectomy is no guarantee against recurrent endometriosis growth.

So. With all that said. Why the fuck am I having one?

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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.

Mulder and Scully from the X-Files
Like Mulder, Scully is the only medical doctor I 100% trust
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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.

A woman's nose
Then there’s that free spirit who finds his calling in your fucking nasal cavity

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.

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Health

The Chronic Pain Balancing Act

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.

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