I forgot to mention that when I wake up I have no pain when I urinate but once I have been upright and moving around the pain comes back within a hour and is consistent for the day. I am not sure if this relates to the surgery location and where the urine is in the bladder when I am in bed and/or the downward pull by standing.
So sorry to hear about your experience. BCG is wonderful for those who really need it and who can tolerate it. But for those few who cannot, it is not fun. I suspect that your immune system and especially that in your bladder lining "over-reacted" and went into a fight mode! It may take a while for your bladder lining, which probably got really irritated, to recover.
Glad that you are seeing your urologist. He can prescribe some medications for the painful urination that are pretty harmless....except for dyeing your urine bright orange or blue.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
4 weeks ago I was given my first BCG treatment 6 weeks out from my surgery for a low grade tumor. I was feeling good and back to "normal" and free of bladder pain when urinating. I was back to my average 24 miles a week running and strength training.
3 days after treatment I started having flu like symptoms and my immune system went into overdrive with high fevers (103.7), severe chills, and bladder pain only when urinating.
After a week of feeling very ill and having seen an ID doc I was feeling better at my followup appointment. We decided to stop the BCG based on my severe reaction as this was more proactive based on the low grade. I have gradually felt better over the course of 4 weeks but the bladder pain persists. I have slowly worked back into my training but at reduced distance and intensity.
I have continued to have bladder pain but had had none prior to the BCG treatment? Why does my pain persist? What did one treatment of BCG do to my bladder to cause this pain? Are there any natural supplements that can relieve symptoms.
I am seeing my Dr. to have my urine checked for a UTI tomorrow but am looking for any insight that others might have.