Hello
I am new to this forum but I would like to share this story and ask if anyone has had a similar experience.
My husband was diagnosed with prostate cancer 14 years ago. He had prostate removal as they advised. we were told that as the cancer had not spread outside the prostate this would get rid of the cancer for good. This was followed up with radiotherapy. Recovered well and regained continence, however sex life was finished. He had the medication to self inject for an erection, however I just didn't feel the same with a false erection, even though he was told they would nerve spare.
Flash forward to October 2025. Early hours of the morning he had a sudden urine retention. Trip to A & E extremely stressful. Drainage and catheter in.
Had weeks of pain and infections, trial catheter removal, unsuccessful. Complete incontinence. Specialist did some investigations and we were going from urology to urinary with no answers. Urinary spcecialist insisting that the previous radiotherapy done 14 years previous had caused the scaring and incontinence. I don't think he gave us much time and assumed he had always been incontinent, this was definitely not the case.
Eventually had a diagnosis of secondary prostate cancer as his P.S.A levels spiked and is still incontinent. Waited 7 months for an appointment at Bristol for a t/c from a urinary specialist. Now has an appointment next month, He is on cancer drugs and hormone treatment to keep the cancer in check and his P.S.A readings are now lowered.
I have a feeling that his urethra valve may have been damaged with a catheter, is this possible and what operation is available to rectify it? I know he can be fitted with an artificial valve but he is not keen on the idea of it. I am not sure why he has not been offered further radiotherapy, however I think I remember being told that they cannot give radiotherapy if it has been given previously.
Sorry for such a long post but if anyone has had a similar experience and can share it here or can offer any advice, I would be very grateful
Thank you for reading this situation has tested my marriage and my husband sometimes does not seem like the same person he was. I know this is due to the hormones but the incontinence thing is extremely hard.
Hello Activeretired
A warm welcome to the group - although I am so sorry to find you joining us.
So as to the incontinence, yes this can be caused by someone inexperienced fitting an indwelling catheter, I should know I've had one in the past for10 months. There is a skill to doing it correctly and getting it in, in my case past my enlarged prostate did cause issues at one point. Radiotherapy can in some circumstances add to the incontinence.
Further radiotherapy (salvage radiotherapy) can be offered but they don't like doing it.
The NHS will - if it's the best possible solution offer to fit an Artificial Urinary Sphincter to solve the problem:
I know we have at least one group member with an AUS fitted and I hope he will respond to your post.
I hope the above helps.
Best wishes - Brian.
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