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Radiation Cystitis: How long does it take for the burning to go away?
I completed 28 radiation treatments 5 months ago. I’ve suffered from radiation cystitis since completion. It has improved very slowly over time. My question is how long has it taken for burning to go away if you had cystitis? I’m beginning to think this is something I will have to live with. I’m currently doing hyperbaric oxygen therapy and it has helped some but I still experience burning. Also if you have experienced cystitis have you noticed if your diet affects your symptoms?
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@brb5306, you may also be interested in these related discussions:
- HBOT therapy for radiation cystitis https://connect.mayoclinic.org/discussion/hbot-therapy-for-radiation-cystitis/
- Radical Prostate Surgery/Salvage Radiation with Cystitis https://connect.mayoclinic.org/discussion/radical-prostate-surgerysalvage-radiation-with-cystitis/
Has the burning gotten better?
@brianjarvis I am just completing hbot (will have done 50 sessions; wanted 60 but insurance won't pay for the remaining). Unfortunately, I don't feel any improvements yet but I understand that healing continues after your sessions are completed.
ALL of these responses are exactly why, that if I need "radiation therapy" someday, I will only do Proton Emission Radiation. The radiation goes "to" the target tissue or area, but "through" to health, non diseased tissue that always gets fried with traditional radiation. Sorry to read of all of these unfortunate complications.
I had Proton radiation 9 years ago and still got radiation cystitis and enteritis during radiation. Cystitis went away on its own in several months. The burning stayed for 9 years. In April this year the cystitis returned, this time chronic. (Bleeding, extreme pain, total blockage requiring catheterization to urinate). Had 30 HBOT treatments and am awaiting compleat healing so I can get an artificial valve. Urine is flowing, no pain, bleeding or burning. I got Proton radiation to avoid what happened to me. I have radiation enteritis too, which is worse than cystitis. Remember, nothing is certain. Good Luck With your decisions.
I finished my Proton radiation in July ,2023. I had some burning in my anus and some discomfort in my testicular area, but they disappeared very soon.
I was concerned about being able to pass urine normally, but very soon my system it was fine.The only problem was that I ended up with ED.In August 2025 I ended up atUCSD’s ER because I could not urinate and I had blood clots and bleeding a lot. The urologist removed blood clots, put with antibiotics and I was in observation all night, and the next day, they sent home with a catheter.As most of you know having a catheter is a very uncomfortably experience . After a week of torture ,my urologist removed it and from that point on I was fine. They recommended that I go for the oxygen therapy. At the end of January of this year I went through 37 sessions. I couldn’t tell you if this theraphy worked or not, because this past Friday evening I ended at the ER for the same, but this time, after running all kind of tests, the nurse told me that I have a UTI, in addition to the hematuria. This time I kept the catheter for a day and went to a different hospital and they removed for me. My urine was clear at that point. The doctor on duty said that some times the irritation of the prostate after radiation will take a long time to heal.
I was afraid of having my prostate removed, worry for the incontinence issue and of course the ED. If I am going to continue with the hematuria and UTI’s,
Perhaps I should have gone the other route. Urologists suppress a lot important information.
Disappointed JAM