Radiation cystitis 7 years post treatment

User

Posted 11 Sep 2026 at 15:19

Hello, I am wondering if there is anyone who has been suffering with radiation cystitis?
My dad was diagnosed with prostate cancer 7 years ago. He had a course of radiotherapy and now on longterm Prostap. He has a suprapubic catheter in place and up till about 6 months ago had no problems. However, he has had haematuria on and off then he has a rapid decline in his haemoglobin requiring blood transfusions.
At his last discharge the Urology Doctors mentioned hyperbaric oxygen therapy.
I am just wondering if there are any other radiation cystitis sufferers out there that would share their experience as well as their treatments.
As you can imagine this is taking its toll on Dad and hospital stays are wearing him down. After so many years of keeping well, this then hits him.

User

Posted 12 Sep 2026 at 00:08

Has he has a camera to look in his bladder? I guess that might not be possible if he can't pee normally.

This can also be caused by the balloon on the end of the catheter.

Hyperbaric oxygen treatment is used for bleeding caused by radiation creating fragile fine surface blood vessels in the bladder or bowel.

There is another treatment for the bladder which is to temporarily fill with air or carbon dioxide and applying a blood clotting agent to the area which is bleeding, but that requires being able to do a cystoscopy.

User

Posted 12 Sep 2026 at 09:57

Lynn, I had severe radiation cystitis a few months after my salvage RT. I tried some hyperbaric oxygen treatment but I think it was to late to be of any benefit for me. I was fortunate to have a hyperbaric oxygen facility around a mile away from home. I contacted the pelvic disease association, they gave me some help.

Thanks Chris

User

Posted 12 Sep 2026 at 15:09

Yes, Lynn. My husband had radiation cystitis with hematuria. He had image tests, of course, and was offered hyperbaric oxygen or hyaluronic acid in in bladder. He went for hyperbaric treatment and so far, so good. No hematuria since he had it, maybe over year or longer.

User

Posted 13 Sep 2026 at 03:52

Hi Andy,

Thanks for your feedback

yeah he has had cystoscopy via suprapubic site. I have read about sodium hyaluronate - is that the same? To be honest, we are willing to try anything. He cannot go on living like this and also affecting him mentally !!

User

Posted 13 Sep 2026 at 03:56

Hi Chris,

Thanks for you reply.
Snap, we have an HBOT place near us too, this would be a private service as NHS waiting times are horrendous. If this would work, we would pay any amount !
Where did you contact the pelvic disease association?

User

Posted 13 Sep 2026 at 03:58

Thanks for your reply Iola.
How many sessions did your husband have and is this still ongoing ??
We are willing to try anything !!

User

Posted 13 Sep 2026 at 13:09

Originally Posted by: Online Community Member

Hi Andy,

Thanks for your feedback

Sodium hyaluronate doesn't seem to be a hemostatic (clotting) agent, so I doubt it.

User

Posted 13 Sep 2026 at 13:50

Lynn, he was planned to have 40 sessions. At the very moment he started hyperbaric he had stopped bleeding, but new bleeding was likely to happen as radiation cystitis is not supposed to be curable, but to deal with symptoms, that's the point. He only took 20 sessions as apparently it was enough. He finished last January. No more bleeding since, but the uro wants to check his bladder regularly. My husband is on blood thinners, it makes things harder, but no bleeding or irritation so far.

Any question don't hesitate to ask.

Good luck,.

Xx, Lola

User

Posted 13 Sep 2026 at 16:31

Lynn, just Google, pelvic radiation disease association, I also have a SPC. Our local HBOT, was primarily a MS oxygen centre, they do give a discount for cancer patients.

Thanks Chris

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