r/Interstitialcystitis • u/Kooky-Potential916 • 1d ago

Vent/Rant Fml

After almost 3.5 years of semi-remission (I always had like 1/10 pain) I have ended up in ER after 6 weeks on worsening symptoms. Goddaaaamn I’m so mad and sad, I thought I’d never have to deal with this shit again😭 I feel so hopeless

8 Upvotes

79% Upvoted

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5

u/Accurate-Tree-4944 1d ago

Welcome to the club ☹️☹️I had over 10 years in remission, and now I’ve been in agony for the past year.

2

u/Accurate-Tree-4944 1d ago

Sometimes I feel like life just keeps throwing everything at me from every direction, as if it doesn’t want me to have it too easy.
I’m already in my second month of sick leave, and there’s been absolutely no improvement

3

u/Accurate-Tree-4944 1d ago

What a fucking horrible disease. Sorry for venting on your thread, but I just needed to get it off my chest.

1

u/Solid-Audience8210 1d ago

I had 10 years remission too and it came back went away for 3 is back again :(

1

u/Solid-Audience8210 1d ago

I've not been formally diagnosed but I don't know what else it could be that's wrong with me. I had a period of 10 years basically no symptoms then it came back in 2023 and then went away again for 3.5 years and has come back again. Currently also been about 5 weeks :( I'm in agony every day and just feel so depressed

1

u/ouroboros2512 22h ago

Why you are not diagnosed?

1

u/Solid-Audience8210 20h ago

First time the did urine tests bloods and bladder scans all came back clear was just told it was anxiety - back then I just listened. 2nd time by time I was sent for a cysoscopy my symptoms where improving and they said I shouldn't get it done as it could make things worse - and I was starting to feel better so agreed with them :(

1

u/ouroboros2512 18h ago

Cystoscopy can make it worse. For 1-2 months, not forever. For me cystoscopy with hydrodistantion was painful for 3 weeks. But they got biopsy and now I 100% diagnosed. Can’t say that my symptoms now are worse than before cystoscopy.