I talk a lot about the struggles I face living with disability. I especially don’t pull punches when I describe my symptoms, mostly because if I’d seen someone do the same I would have been diagnosed years sooner.
What I’ve talked less about are the upsides to living with my conditions. Because—surprise—there are
I think I’ve been hesitant to broach this subject for fear I’ll be seen as relishing my conditions. That people will think I’m enjoying “playing the victim”. What I didn’t realise, until very recently, is how essential disability pride is, not just as a survival mechanism, but also one that allows us to
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?Read More
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.Read More
In 2016 I had to leave a job I loved because I was too sick to work. I’ve since had three 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.Read More
Going on medication for mental illness can be a difficult choice, but for some of us, it’s the best one we can make. I’ve been on meds for going on 5 years now and while I don’t regret the move, there are some things I wish I’d known before embarking on the journey. Here are 4 of them.Read More