Only showing internal symptoms, struggling to get adequate treatment. Struggling in general.
I was diagnosed with LS several months ago and was given a resounding no on steroids. My symptoms are all internal, my urethra all the way to the bladder are the problem. Been in pain for a year and a half.
The only thing I was offered for any sort of treatment was stuff to dilate which hurts almost as bad as when I got the cystoscopy done.
Dilating basically knocks me off my feet for a whole day afterwards I can't do anything I don't have any energy I'm just in so much pain so I get to do it on a Friday night and lose my Saturday what fun.
The doctor didn't want to do anything with steroids which I think kind of makes sense I I would have to apply it daily internally and if it's anything like dilating it would ruin my life doing it everyday.
I just don't know what to do, they threw an antihistamine at me and pretty much shrugged their shoulders.
Uninsured too so I'm going to struggle to get a second opinion anywhere else.
Even trying AIP diet for a few weeks doesn't help with pain.
I also feel insanely guilty I can't cuddle or be intimate with my partner as much as I'd like, and I kept saying this was something I'd fix and wouldn't be a problem in the future and I feel like with what I know now I lied. They the most supportive partner I could ask for, they do so much for me and to take care of me.
unrelated but related I'm a trans woman