Hi again!! I think I responded to your questions about BCG treatment above, so I will just add a little more on other issues.
Interstitial cystitis is one of those things that doctors really do not know the cause of and (in my opinion) often use it to cover things when they don't quite know what is going on!!!
AND it is many times more likely to be diagnosed in women. My suspicion is that CIS was causing all the symptoms from the beginning. I had been diagnosed with recurrent urinary tract infections for over a year (and interstitial cystitis was mentioned, but not seriously, as a possibility). Of course, no one bothered to take a culture! When I finally saw a urologist, and cultures of urine were taken...guess what? NO BACTERIA. That is when CIS was finally diagnosed, and my urologist said that it could explain all the symptoms.
I am amazed that your husband's uro said it could be CIS and didn't do anything. Immediately after I was finally diagnosed we began BCG. My uro even had me cancel an imminent trip of three weeks to China since he said that CIS is high grade and MUST be treated asap.
This is not something to be treated lightly, and it needs to be taken care of as soon as possible. I am not really familiar with the medical system in NZ (but I think you have a wonderful, beautiful country!) but it appears that BCG is the treatment of choice there also.
And no, there are no permanent side effects to BCG (unless you are one of those rare people who have an unusual reaction to it) EXCEPT that it reduces the incidence of CIS by up to 70%. I am now five years out from my initial diagnosis, and completely normal (well, urologically speaking.) I am so grateful to my urologist for my diagnosis and treatment...it truly did save my life.
Hope your husband can have the same experience!!
Sara Anne