Story about Interstitial Cystitis .

My story so far

Jun 23, 2026

By:


I started suffering when I was 15, now 19 years old. Started with UTI symptoms and pain in my back. Has ultra sounds and dip tests and was put on antibiotics. 

Saw a consultant and was diagnosed with an overactive bladder and put on medication. My symptoms got worse then I was unable to urinate and lived with a suprapubic catheter... so went for a 2nd opinion. Had a cystoscopy, urodynamics, laparoscopy and biopsies. 

I was then diagnosed with adhesions, pfd and interstitial cystitis, put on medication, had bladder instillations and I was referred to a professor consultant. 

He then completed another cystoscopy, video urodynamics and then a trial for sacral nerve stimulator. The stimulator trial worked so he put a permanent one in.. Although I can now urinate I still live with pain. I complete the whitmoor cocktail at home and self catheterise daily. I am on 22 tablets a day

 

 

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