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
Sara Anne