Hi @tgsmith, I’ve learned it is widely accepted, by Urologists and patients, that any nasty symptoms during and after intravesical BCG immunotherapy are simply part of the process and to be tolerated. I tried that. Ultimately I had to say, “no more”. I suspected, and it has been confirmed, that I suffered from something other than the usual side effects.

I’ve had a total of 12 BCG instillations (6+3+3). The night after the 4th I experienced two hours of severe (level 9) pelvic pain. That started 18 months of constant and increasingly elevating severe pain (5-9) and urinary frequency (35-40 X/day).

My 2nd Uro/onco diagnosed me with BCG induced cystitis and tried to treat with various medications. After 18 months of trying different medications with little benefit I came across some information in the bladder cancer group on inspire.com while searching on “BCG induced cystitis”.

In a nutshell, it was there that I learned about the possible infectious complications of BCG immunotherapy. I went to an Infectious Disease doctor, who tested, diagnosed and treated me for a mycobacterial (m. bovis) infection of the bladder resulting from intravesical BCG. I’m nearing the end of a 9-month regimen of antibiotics but frankly the pain and frequency ceased after the first 3 months.

Treatment of my BC has been changed from BCG to monthly intravesical Gemcitabine/Docetaxel chemo. Cytology and cystoscopies have shown that to work for the past 7 months.

Best to you…