Radiation Cystitis

Hi Jin 

I left your post for others to answer as I only had experience of this while actually going through treatment, and not as a late effect. I’m sorry you haven’t received any replies yet, but me replying will give your post another nudge to the top of discussions. 

I think the issue with a lack of replies might be the time between your treatment and this happening as it is very unusual to have this happen so long afterwards. Some of our newer members haven’t begun their treatment yet, and others who have had treatment have gone through it much more recently. My treatment was in 2018, and I didn’t experience any late effects afterwards.

Has your doctor suggested anything that might help you with this issue?

Sarah xx

Hi Jin, I have had this and it isn't unusual. Late effects from pelvic radiotherapy can happen years after the treatment and there are now late effects clinics in quite a few hospitals in England.  I went through the same treatment as you as well as brachytherapy 16 years ago and had to go for a cystoscopy where they effectively hoovered up the blood clots, I have had to have this done twice over the past 5 years as it tends to happen on and off.  Ask to be referred to a Urologist for further investigation.