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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

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    Hi, Rachel I was reading this chat to see if anyone else has been suffering like my father. He had 11 BCG treatments before they stopped it as he was suffering so much from the side effects. That was about this time last year. Recently he had a Flexi cystoscopy which showed up a very inflamed bladder but as we nearly lost him when he had his last biopsy Via rigid cystoscopy they don't want to do that again so they're treating him now with iAluril treatments to help repair the bladder walls as they think it might be cystitis caused by the BCG. The reason for this post is he is in so much pain, he's had bouts of the same pain towards the end of the BCG treatments but recently it's got so much worse and the excruciating pain is mainly in his penis. I've spoken to the consultant and nurses about this but they don't seem to have any solutions or even explain or explore the causes. He's currently in agony and has been since last Sunday with a few hours here and there where it subsides a little. I wanted to ask is this common and/or can anyone suggest what to do, I'm at my wit's end seeing him in so much pain especially when we are all still grieving the loss of my mother a couple of years ago 

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  • Offline in reply to Rachelt

    Hi, Rachel I was reading this chat to see if anyone else has been suffering like my father. He had 11 BCG treatments before they stopped it as he was suffering so much from the side effects. That was about this time last year. Recently he had a Flexi cystoscopy which showed up a very inflamed bladder but as we nearly lost him when he had his last biopsy Via rigid cystoscopy they don't want to do that again so they're treating him now with iAluril treatments to help repair the bladder walls as they think it might be cystitis caused by the BCG. The reason for this post is he is in so much pain, he's had bouts of the same pain towards the end of the BCG treatments but recently it's got so much worse and the excruciating pain is mainly in his penis. I've spoken to the consultant and nurses about this but they don't seem to have any solutions or even explain or explore the causes. He's currently in agony and has been since last Sunday with a few hours here and there where it subsides a little. I wanted to ask is this common and/or can anyone suggest what to do, I'm at my wit's end seeing him in so much pain especially when we are all still grieving the loss of my mother a couple of years ago 

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