Radiation cystitis

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

Hi Leanne, sorry for the late reply, I haven’t been on here for a long time. How are you now? Has it eased, do you have any help? It must be so disappointing for this to happen now. I had the most painful cystitis for 9/10 months after treatment, so so painful but, I wanted to say this in case you’re still experiencing it, people kept saying cranberry juice but I didn’t want the sugar but, high strength cranberry extract capsules have helped me a lot and also cystitis powders - I used to have the powders as a ‘treat’ l as I didn’t want to take them continuously. Also, my oncologist mentioned a hyaluronic acid treatment specifically for cystitis that coats the bladder, you may be able to request it. 

I really hope you get some improvement soon if you haven’t already x