In honor of #EndometriosisAwarenessMonth: This is for the #MedTwitter community - especially #OBGYNTwitter - with the hope that it will help at least 1 future endo patient have a better experience than I did. A long 🧵: 1/?
3 weeks ago, I had an 8+ hours-long endo excision surgery that resulted in a unilateral #salpingectomy, an #appendectomy, & a partial #BowelResection. The thing is, it didn’t have to be this way. 2/?
I’ve had horribly painful periods since I was a teenager. Doctor said it was normal, just start taking ibuprofen a couple days early. By 18yo, oral contraceptives were recommended to manage it. That ‘worked’ for about 10 years? 3/?
Worked in the sense that I could control when I would get it & plan my life around it. Every time I brought it up at GYN visits - ‘normal.’ Then at ~30yo, I started having unexplained GI symptoms. I shrugged them off for the 1st year... 4/?
attributed it to a year abroad filled with new foods & maybe a stomach bug or two. But I got back & the symptoms continued, for years now. I’ve got a wonderful #gastroenterologist who tried everything you can think of - colonoscopy & endoscopy, SIBO tests... 5/?
& fructose & lactose intolerance tests, a motility study, countless med trials. There were some hits w/ the tests but no treatment really worked. In early 2021 I stopped my pill, hoping I might conceive. My periods then felt like a form of torture, like maybe I was dying. 6/?
After 5 months, I saw my GYN. She was… indifferent. Said “could be endo, just get pregnant”. I’ll never forget the look of confused pity on her face when I cried. (She then said “oh… you’re upset.” …I didn’t know a healthcare provider could be so cold, lessons learned.) 7/?
But she agreed to an ultrasound and after a couple of those, an MRI, & finally a consult with an endo specialist, I had some answers & a sense that maybe I wasn’t insane after all. A couple more pre-op tests & I finally got my surgery. 8/?
Docs said it was good I got treatment when I did - I had implants on one ureter, so at least we caught it before I lost a kidney, plus I got to keep both my ovaries mostly intact… that’s how low the bar is at this point. 9/?
I’m lucky in other ways too: lucky I had the medical and health literacy to navigate this nightmare, lucky I live near NYC & have access to world renowned endo expert @DrSeckin, lucky I had the financial means to afford this surgery at all... 10/?
lucky I work in fertility & thought to check my AMH and freeze eggs a few years ago out of paranoia - & lucky I could afford that too, lucky I work from home which makes living with endo symptoms & managing my surgical recovery much easier... 11/?
lucky I had access to a therapist through this stressful & anxiety-provoking time. I don’t FEEL lucky, but I know I am. It’s hard to discern if my pain was ignored because I’m a woman or because I’m a person of color, I suppose it was probably a combination of both. 12/?
My story isn’t unique - it’s the classic story of endo patients, ignored and ignored for years, oftentimes with dire consequences to their health and/or fertility. So #MedTwitter community - please listen to your patients, don’t just shrug them off or ignore their pain. 13/?
And while we’re at it, let’s reduce stigma around #invisibleillness & #infertility and help raise awareness around #endometriosis. 14/14
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