Thread by @Nicole_Lee_Sch

The past like 6 months I've had terrible urogyn care. I had a UTI, gyn didn't do a culture, gave me 3 day course of meds, I didn't get better. I waited weeks to get a simple appt to do a sample and see an NP. She dismissed my issues entirely. But culture comes back positive. 1/11

Then tells me I'm "too complex" and drops my care. I scramble and go with an infection for weeks waiting for urogyn opening. Surprise I still had the same infection, the 3 day course of meds didn't treat it bc I have a shitty immune system and it was already too severe. 2/11

Then first urogyn decides I need thousands of dollars in tests and tries to convince me I need surgery. When I explain some EDS issues she tells me I'm "using my disability as a crutch and would get better if I just centered myself." So I switch care again. 3/11

At this point, I've had a UTI for ongoing 2 months. And while the last round of 7-10 day antibiotics helped, now my new urogyn finds I have high tone pelvic floor and lasting damage from the infection. I also have mild incontinence. Not a fun time. 4/11

She Rx pelvic floor therapy but they're booking out till March (it was Nov). I find another company, who manages to see me in two months. The whole time I'm waiting I'm symptomatic despite doing all of the diet changes, supplements, etc the urogyn recommends. 5/11

Then I pay $700 for 6 weeks of pelvic floor therapy in Jan/Feb. My therapist introduces myofacial release, and introduces 4 exercises. I do heel slides, squats, and deep breathing. She has me stand on one leg with my eyes closed. 6/11

In the meantime I find videos for high tone pelvic floor on TikTok. I look at YouTube. I research. And I come up with my own PT set. I'm only symptom free because I used community resources. 7/11

I only stayed in PT because I know I can't voluntarily discontinue care and expect insurance to cover PT for any other issue in the future. So if you don't have hundreds to spend, and you have a dx, please know that there are a ton of online resources. 8/11

You can use them in tandem with formal resources, or as a temporary measure till you can get an appt, or in place of unaffordable and inaccessible care. Caveat - I'm not that kind of Dr, this isn't formal medical advice, but just for other crips out there struggling. 9/11

Also no one talks about incontinence, but 1/3 women will need pelvic floor therapy in their life, and you might need it at any age. If you have incontinence, it's not dirty, it's not gross, your body is a body. Even if it's malfunctioning that's ok. 10/11

If anyone's struggling with similar issues, my DMs are open! And if you're a medical professional please for the love of God listen to your patients so they don't develop irreparable side effects from your neglect. #MedEd #MedTwitter #DisabilityTwitter 11/11