I wondered, did you get one round of 6 followed up by 3 weekly treatments that added up to 21, or more than one round of 6?
It sounds like a dreadful situation and my heart goes out to you. I hope this new angle of treating IC helps. Did you know that BCG has been used as a treatment for IC?
Have you tried Pyridium? any other kind of strong pain med, not over the counter, but something more 'serious'?
I hope it's not IC as that is a very hard condition to treat, and notoriously painful. Many folks with IC opt for cystectomies to cure the pain.
Maybe this is just a temporary condition from BCG overload (though not everyone will get this from 21 treatments) and will pass. Unfortunately I have to resort to platitudes like "only time will tell"...wish I could come up with something more helpful.
I have almost exactly the same problem. Had my TURB nearly 4 months ago and my 6th BCG 2 months ago and now have edema (severe swelling & inflammation at the bladder neck area) plus pain when I urinate, sometimes blood. Cytology test a couple of weeks ago negative, plus negative for infection on urine culture. I'm having a cystoscopy tomorrow (dreading it because of inflammation ). Doc prescribed Celebrex several weeks ago for inflammation -- helped a little bit but still painful. Will let you know what he says after tomorrow's appt. From what I hear on the forum this is not all that unusual and the positive side is that the inflammatory reaction to BCG is actually still fighting the cancer. I had CIS (Carcinoma in situ - grade3).
I was first diagnosed with CIS about two and a half years ago. I was resected twice then began BCG treatment. In late Jan. of 2007 I had my 21st BCG treatment. I was scoped and irrigated (F.I.S.H.) test in march...all negative. At that time I had been experiencing the need to urinate every hour 24/7. Some burning and pain...felt the need to go immediately after voiding. Doc can see only inflammed tissue. Went in for 3 month scope 5 weeks ago 6/29/2007...No tumors...but still have inflamtion on walls of bladder. Urine test show no infection, No tuberculosis in bladder. Nothing gives relief, aspirine, tylenol , detrol....Doc decides to try treating for I.C. with antihistimen)Hydroxyzine), anti-depressent(Amitriptyline), and Elmiron. They say it could take up to 3 months to get releif. Anyone have any ideas???Help!!!!!