I had treatment for prostate cancer starting in 2019.
37 days of radiotherapy and 3 years Prostap 3 hormone injections (3 monthly).
2022 had terrible retention problems.
2023 had to have a urethrotomy to remove stricture.
2024 had to have a painful dilation.
Have ongoing issues of frequent trips to bathroom both day and night and terrible burning sensation.
Trying to find solutions to ongoing problems.
Has anyone tried Hyperbaric Oxygen Treatment or
Botox (intra-vesical Botulinum Toxin)?
Hi - sorry to hear of your painful problems. I was diagnosed with an aggressive and advancing PCa recently and had ‘the works’ (surgery, hormone treatment, chemo and radio) under the STAMPEDE Trial. I’m still gratefully disease free 7 years after all this kicked off (now 67y), but have suffered from quite a few treatment side-effects. On the urinary side I’ve now had 3 dilations - as you say, very painful - for a stricture/scarring probably caused by both my prostatectomy and radio. (I’ve not had a urethrotomy, but I’ve had problems with retention, and one occasion I had to catheterise myself in an airport toilet - not the best place!) On one procedure I had a catheter afterwards and I’m sure that helped the early healing (and pain) a lot. This time (yesterday, actually!), they also removed a potentially suspicious area of my bladder wall as well, though that looks like it was a false alarm (🤞).
I found that the burning sensation died down after a few days post-dilation, though. Maybe you aren’t healing as well as hoped - have you asked about that? I’m constantly (nearly) reminded of the trauma of the operations as I need to catheterise every few days (before yesterday’s repeat procedure it was 6) for a minute or so to ‘keep me open’. There are more advanced urethral treatment options available, I understand. Maybe investigate? My advice on continence is to keep doing pelvic floor exercises, slow and fast, three times a day. I’ve done them now for 7 years and they’ve worked for me, though I still need to take precautions, mainly during the day. I also engaged with a private male physio, who helped me immensely, and also with encouragement.
Not tried either of the other options you mention.
I very much hope you can get relief somehow.
I'm using Hypobaric Oxygen treatment to treat Radiation Cystitis which is bleeding from the bladder; I had follow up radiotherapy after having my prostate removed. It seems to help to keep the problem in check.
HB0 treatment acts as a general "healing process" its used to treat a range of problems from sports injury to multiple sclerosis9 (MS). It would be worth making some enquiries. The MS society operate a number of HBO centres, I use one in Bristol. These centres have charitable status and some of the staff are volunteers, they are relatively low priced in comparison to private medical providers who seem to be intent on screwing as much money from unfortunate people as possible.
Thank you Alfred 😊Good luck for your future health 🤞
you have been through the mill Rockstar. My main problem is peeing at night it’s like someone had turned the tap on nobody can tell me why and the meds they gave me caused an infection so I just cope with it as best I can . They did talk about taking my bladder out I think as they couldn’t operate they told me the growth is too vascular but it has shrunk . To be honest I come out with more questions than I have going in plus I get snippets of info from different people ,there is a serious lack of communication . My local oncology hospital is like the holy grail you feel bad having any critism about them but talking to other patients the theme is poor communication . I haven’t heard about oxygen therapy or Botox and I don’t know of anyone who has had this I must look it up . ..I like many of us on here have searched for solutions . I read about the properties of sour sop leaves and the positive outcome people have had with one person stating her fathers cancer markers for prostrate cancer were back to normal having had sour sop for 6 months , you can make tea with the leaves The only thing I can say is that my oncologist was amazed on how much my growth had shrunk plus the inflammation in my bladder has improved but I can’t say whether it’s because of sour sop or the effects of radiation continuing to do it’s work on the tumour . I am sceptical about some alternative therapies particularly when there are big advertisements behind them I found out about sour sop on TikTok !!! From ordinary people who had used it and their experiences there is also some positive feed back about black seed oil I did take it for a while but it’s foul to take I hope you find a solution it trial and error isn’t it and it’s good to share experiences . All the very best and I hope things improve for you keep us posted xx
Thank you... Will do 👍
Gastro visit 
Mental Health & PRD
bladder issues
cramps pains / scar tissue 
