after effects of BCG bladder treatment

Hi everyone

I haven't posted for a while but I'm interested to know if anyone has experienced or is experiencing anything like myself. My BCG treatment was stopped after 12 rounds due to the severe pain I was experiencing. That has now been over a year ago. My latest cystoscopy shows the bladder looking good and healthy and no signs of regrowth from the MRI scan. My urologist has tried numerous treatment to resolve the ongoing pain that I'm suffering but to no avail. I have subsequently been referred to a pain specialist who has tried a steroid injection which did absolutely nothing. They presume that I have had some neuropathic injury possibly from the treatment. I suffer day and night with the most excruciating pain in my urethra region that feels like broken glass/burning both before and during urination. The only way to relieve the pain for a period is to urinate. It feels like I'm going into a torture chamber every time I go to pee! When I experienced these symptoms in the early days they went within a few days after each treatment. Now a year or so on the symptoms haven't subsided at all. Incredibly frustrating and demoralising, especially as they don't know how to treat me. I'm hoping the next step of trying a pudendal neuralgia block will do something as the pain is definitely in that region. Keen to hear if anyone has had similar issues and if treated, what was successful. 

Parents
  • Hi Capey / all

    It turns out more than just the pain - there were constipation and urine block and now he is on Urine Catherer etc temporarily ...I don't have the full details but I think its getting better from what I hear from him.

    The issue of pain is still there - I suggested CPD but he is likely not going to take this seriously but I am going to try and keep pushing him to try!!! What CPD should I suggest? I don't know anything about this - If there are any links you can send for the pain this causes it will just help. 

Reply
  • Hi Capey / all

    It turns out more than just the pain - there were constipation and urine block and now he is on Urine Catherer etc temporarily ...I don't have the full details but I think its getting better from what I hear from him.

    The issue of pain is still there - I suggested CPD but he is likely not going to take this seriously but I am going to try and keep pushing him to try!!! What CPD should I suggest? I don't know anything about this - If there are any links you can send for the pain this causes it will just help. 

Children