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. 

  • As you mentioned, patients react differently to the treatment, some sail through it and others suffer side effects. Once the BCG is administered it starts to do its thing. There is no way of knowing how one will respond to it! You can't reverse it, it's just about trying to treat the symptoms which in some cases can be treated with standard pain killers but in other cases (like my own) where they don't help! Unless there is some information out there on successful treatment for the pain, we unfortunately have to live with it. I know that's not the answer anyone wants to hear but believe me, I would love to know if there is! If in your research, you or anyone on here has success in treating the long term pain, I would love to hear from you.

  • Thanks Capey. 

    Some above have suggested painkillers (like tramadol or even just paracetomol) - Is it not possible just taking these everyday for the rest of the life? Looking online paracetomol doesn't have side affects (https://www.nhs.uk/medicines/paracetamol-for-adults/how-and-when-to-take-paracetamol-for-adults/)

    Sorry if this sounds like a stupid thing to say - but I want to be sure that every avenue is thought of. 

  • Yes, Tramadol is often prescribed by doctors and can help take the edge off. It is a stronger painkiller and can only be prescribed by your doctor. Any painkiller taken over a prolonged period can have side effects. I personally would only use painkillers short term as that's treating the symptoms and not the route! Always best to consult your doctor for advise on what avenue to take.

  • 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.