Radiation Cystitus

[AlfredSaxon]

I suffer from Radiation Cystitis-- this resulted from follow up radiation 7 years after I had my prostate removed. I experienced passing of blood in my urine, however this has been managed successfully my the use of a product called Cystitat which I instill into my bladder via a catheter. But I have bladder leakage and am interested in any info on new treatments for this part of the body. Am prepared to share my experience of using Cystitat

[D_Cymro]

Hi Alfred. I had 'precautionary' radiotherapy of my prostate bed 18 months after a prostatectomy as part of wider follow-on treatment. I was advised to avoid/cut down on drinks containing caffeine, alcohol and CO2, especially later in the day and also to drink more water - to lessen the unpleasant feelings of irritation when I do go. I was told this would improve my retention capability as the stinging makes you feel you need to go anyway. However, drinking 'as normal' in the evening is not good as my remaining muscles after surgery in the area of my urethra have to work harder to keep me continent at the best of times, so too much liquid/water at night brings along another problem. A rock and a hard place comes to mind. I have had to re-learn things about my body that I thought I had the hang of over 60 years ago!

I have occasional blood in my urine which the medics say is common in people who have had pelvic radiotherapy. I'm worried that if carries on, I won't be able to distinguish it from more worrying symptoms of (secondary) bladder cancer. DC

[AlfredSaxon in reply to D_Cymro]

Hi D_Cymro. The symptoms you have are very similar to mine. I had radiotherapy follow up following prostatectomy --I now wonder if this was wise, particularly if there is only a small rise in PSA count!! Blood in the urine caused by Radiotherapy is common and can be very severe. My blood loss was so severe that it caused blockage on 3 occasions which required visits to A & E. To treat this problem I instill into the bladder, using a catheter, a product called Cystistat--its 50 ml of a colourless liquid--I do this every 6 weeks having been instructed by my Urology Dept. This product was not designed for this problem, so some urology depts will not use it, however it works and without it I would be back to regular blood loss. Radiology Departments are far from transparent about the side effects of radiotherapy, and if I could turn the clock back I most certainly would not have undergone the treatment--would have gone for medication or surveillance. PRDA do a good job in highlighting the problems caused by Radiotherapy