Since this doesn't really sound like bladder cancer, I doubt that many here have information that would help you. We are not doctors, but rather patients and family somewhat familiar with bladder cancer.
However, I do have a couple of suggestions. Was your diagnosis, by any chance, interstitial cystitis? There are support groups similar to this for that diagnosis.
Also, when you seem to be "getting nowhere" with a doctor that may indicate that this is a time for a second opinion. Is there a medical school near you with a good urology department? That is where I would probably start.
Hope you find some answers
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I had inflammation of my bladder and the surgeon recommended cystoscopy and diathermy of my bladder which I had done over 2 months ago. It causes me terrible urgency, frequency and some pain even 2 months on. I am now on steroids, overactive bladder medication and antibiotics to try to alleviate these symptoms. None of my doctors have been able to tell me when this will go away so I can get back to my original life does anyone have any knowledge about this or when this will go away? Please help.