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after effects of BCG bladder treatment

Capey
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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
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    Dear Capey

    I am wondering if you are still having pain now or it has gone. My dad is having the same problems with severe pain in his Penis it's unbearable for him he also has haematuria. I can't bear to see my dad suffering the way he is, he has been on maintenance BGC now for a couple of years after his initial treatment and is cancer free, but the pain is taking its toll and he is just so drained, its ruining his life. Please let me know if you managed to get your pain under control and if so how. Really hope you are now OK.

    BW Rachel

  • Offline in reply to Rachelt

    Hi Rachel

    I am so sorry to hear how your dad is suffering with the pain. Unfortunately, I'm still suffering. The pain varies from mild to intense pain and the only way to relieve it has been to go to the toilet and try and pee (which in most cases) is painfull. This has been going on for alomost 4 years now. My Urologigist has been unable to help and I have seen a pain specialist who has tried everything under the sun from medication to various treatments but to no avail. I have no idea why some of us suffer from pain more than others and why for the few of us it doesn't seem to subside.

    The things I have been doing is drinking loads of water and staying free form cafeine and alcohol. Althgough the intense pain is more in the urethra, it's when the baldder fills up that I start to feel the pain. I've also changed my diet to haelthy foods and cut out sugar. I'm sure these have helped but not healed the situation. Sorry that I can't give you any positive guidance.

    You mentioned he has haematuria! This is a little concerning. Has he seen his consultant regarding this? It is worth having this checked out. Regarding the pain, he can ask his consultant or GP to prescribe some med's for neuropathic pain. This did help me for a while as the pain is definatley neuropathic in nature.

    Best wishes

  • Offline in reply to Capey

    Thank you so much for your reply I'm so sorry you are still suffering...we have an appointment Friday with GP and I will be going along with my dad...as he is a proud man that won't make a fuss...hides his pain so when he is saying it's unbearable...well I can't imagine how bad it must be...he still sees his urologist and they have not really said much about the haematuria...at least we can hope for some better pain relief...I will ask for neuropathic pain relief thank you once again for your reply...stay strong keep fighting...best wishes to you x

  • Offline in reply to Rachelt
    Hi Toni, unfortunately I lost my dad in August I think the pain was just to much and he became so weak from it that it caused other problems he wasn't the strong man he had always been and it affected his whole mind and body in the end....my dad was on morphine and that helped a bit but as soon as it wore off he was in pain again...it was such a sad way for my dad to spend his last part of life...cranberry juice helped a bit but other than that and morphine we found nothing that helped him... we did think about CBD and I wish we had tried it..but we didn't...I'm so sad to read that your poor dad is suffering I wish I could offer some helpful advice.. I do wonder if meditation would help but my dad didn't believe in that kind of thing...I really hope your dad's pain goes away...I know exactly what you are feeling ...just keep going to the dr and speaking to the BCG nurses ...dont sit back and be fobbed off...sending my best wishes to your dad xx
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  • Offline in reply to Rachelt
    Hi Toni, unfortunately I lost my dad in August I think the pain was just to much and he became so weak from it that it caused other problems he wasn't the strong man he had always been and it affected his whole mind and body in the end....my dad was on morphine and that helped a bit but as soon as it wore off he was in pain again...it was such a sad way for my dad to spend his last part of life...cranberry juice helped a bit but other than that and morphine we found nothing that helped him... we did think about CBD and I wish we had tried it..but we didn't...I'm so sad to read that your poor dad is suffering I wish I could offer some helpful advice.. I do wonder if meditation would help but my dad didn't believe in that kind of thing...I really hope your dad's pain goes away...I know exactly what you are feeling ...just keep going to the dr and speaking to the BCG nurses ...dont sit back and be fobbed off...sending my best wishes to your dad xx
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