I am currently 24 and was diagnosed with pcos and then with endo thru lap in Aug 2025. Took years and mult docs to believe me of course. Once the excision surgery was done, my doc was like “great! youll be good now” and then i wasnt only 3 months later. She suggested myfembree, which insurance denied, she suggests orlissa, which insurance denied. Now she says I have no other options since all birth controls made my symptoms worse. Then I find out these drugs basically put you in menopause so why the hell would I want those symptoms anyway?! Especially if its just going to grow back. I take a million vitamins and supplements and tinctures and teas.
I have never been referred to pt for pelvic floor stuff. During the surgery she only looked at my reproductive organs sunce she was just an obgyn and I didnt know any better. and now almost a year out from the surgery I am doing all this GI stuff- endoscopy/colonoscopy- found nothing of course.
In college, the disability office was cruel. Advisors were cruel. Telling me that they saw hundreds of people with my diagnosis get out of bed everyday so why cant I. That maybe school isnt for me. That maybe i should try to get on disability. Now, at work, theyre doing the same. “Maybe retail isnt for you” “You can try to write a list of accommodations but we cant guarantee anything we need employees to be flexible”
Im not going to sit here and describe my pain because you all know it. I just need some help. No one understands. My fiancee is my only support. My family tries they are at least sympathetic but honestly they think the pains in my head. Two months ago I had the worst flare ever and went to the ER twice and was treated like a drug addict. I just dont know what to do anymore. Can someone please empathize or give advice I dont know Im just so lost and broken down. I went from 136 to 116 lbs in 2-3 months I am so weak please nothing helps
I have an appointment at the end of this month with a real endo specialist, but I have so many anxieties due to be treated so poorly from the medical community. I hate to sound like a victim but it truly has felt like bullying someone who is actively dying right in front of them.
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