Wonder whether anyone out there has experience of having a long term catheter removed and, if so, how this has been managed. I was catheterised at the beginning of March as an emergency (couple of days after diagnosis of advanced prostate cancer, no symptoms so all a massive shock) - bladder was distended and not emptying properly as urethra restricted by enlarged prostate - as far as I was concerned I was still peeing normally but obviously urine was retained every time. Told by Consultant Urologist catheter would be in place for at least 3 months, however at the end of April was given an appointment for a trial without the catheter and spent a somewhat stressful morning at the local hospital when, despite feeling I was about to burst and desperate to pee, only a few drips emerged, so, catheter put back. The next week I started the 6 x 3 weekly course of Docetaxel so nothing further to be done until this is finished, just had 5th session and one more to go. Incredibly lucky with very few side effects and feeling well so far.
Specialist Urology Nurse seems confident the catheter is not permanent, however, can't help feeling that if it is removed everything is not going to be as it was - presumably my bladder must have been stretched/distended by retention of urine so no idea if there is any muscle tone there. From 2 weeks before the trial catheter removal in April I had been using a flip flow catheter valve to empty my bladder rather than a leg bag, and have continued with this as it makes life much more 'normal', however, very seldom feel as though I need to pee - usually I 'go' at regular intervals (about 3 hours maximum). My main concern is that the catheter is removed and I am left incontinent as would rather keep the catheter if this is the only alternative. I am too squeamish to consider intermittent catheterisation even if this were feasible, and even if I weren't it does seem to be very disruptive to 'normal' life. Would be grateful to hear other's experiences and recommendations. Thanks.