Hi I finished my treatment 2 years ago and recently been in agony when going for a wee spoke to my oncologist about it and she sent me for a camera in my bladder which has been confirmed as radiation cystitis, has anyone else suffered from this and got any advice how to make it less painful when going for a wee
Hi Leanne702
I’m sorry you’re still having this issue so long after treatment. I had terrible radiation cystitis during radiotherapy but it did go away after treatment, so I don’t have the same experience of this being a late effect to share unfortunately.
Has your consultant suggested any treatment for this? When I was going through it, I used aquaphor cream on the area before and after going to the loo, and I used a peri bottle where you you fill it with water and use it while going to the loo. It can also be helpful to use a sitz bath which is like a portable bowl you put on top of the loo and fill with warm water and simply “go” in the bowl. It’s easy then to empty the bowl into the loo and clean it out. Obviously all of these things are a bit of a faff but I was able to cope for the time I was suffering with it. I don’t know how feasible these things are in the longer term though. These things just made things more bearable for me.
It was a really uncomfortable thing to deal with for me, but I wondered if you have been offered any solutions in the longer term? I was very unwilling to wee, but that’s counter intuitive and it’s better to keep drinking plenty water.
I hope you’ll receive other replies from anyone in the group suffering from this in the longer term
Sarah xx
I’ll add a link to the pelvic radiation disease association which you may find helpful
Pelvic Radiation Disease Association
Sarah xx
