PCa Phase VI - Urethral Stricture - Personal stories - Prostate Cancer UK Online Community

User

Posted 18 Sep 2024 at 19:49

Hi everyone. I have finally come to the top of the waiting list for a flexible cystoscopy to find out the cause of my dwindling urine flow. I had the procedure today and they found multiple urethral strictures which prevented the scope reaching the bladder. The images on the screen were incredibly detailed. Even I could have made the diagnosis. She had a go at dilating one stricture but was not satisfied with the results so didn't continue. She also mentioned possible bladder neck stenosis. So, the next step is another attempt at dilation under general anaesthetic. Fingers crossed that it will do the trick. However all was not bad news. The dilation attempt seems to have made some impact. I'm peeing better than I have for months (albeit painfully at the moment). I would be interested to hear from anyone who has been through this process and what the outcomes were. As this problem has arisen two years after RP I'm guessing the cause is down to the SRT that followed RP. Chris

Edited by member 26 Sep 2024 at 19:33 | Reason: Not specified

User

Posted 19 Sep 2024 at 07:22

Hi Chris

I had RARP nearly 8 years ago. A while later my flow diminished and eventually got down to about 3ml/second. Urge and frequency also increased as the flow diminished. I spoke to Urology fairly early on and was offered a dilation under GA. I resisted for as long as I could because I was told that they may be able to just stretch (dilate) it or may need to cut it to open it up, at this point I'd not had cystoscopy. Eventually 3ml/sec became unmanageable so 3 years post RARP I bit the bullet and had it done. I did ask that he avoided cutting if at all possible. After the op I awoke with a catheter in which was removed after 5 days. He only dilated with no incision. I was then peeing like a horse and wished I'd got it done sooner. About 3 weeks later I had an appointment to learn self catheterisation to keep the stricture open. I did that once a week at first but it started getting difficult to get through. Now I pass a small one (size 16f) followed immediately by a larger 18f every 3 days. The peeing like a horse has diminished but flow is absolutely fine now.
Self catheterisation is no problem at all once you get the hang of it.

Good Luck

Cheers
Bill

Edited by member 19 Sep 2024 at 08:04 | Reason: Not specified

User

Posted 19 Sep 2024 at 10:53

I developed two strictures after my prostatectomy, ending up with a flow rate of 1.3 which the consultant described as "appalling" in his letter to the GP! I had a dilation and urethotomy under general anaesthetic in November 2021. Since then I have been doing self-dilation, first weekly, then fortnightly and currently four-weekly. I have had no problems so far after nearly 3 years but I must confess that is mainly because my wife helps me with it !

In general, the traditional options have been:

urethoplasty - this has a high success rate but is major surgery.

urethotomy/dilation - these are much less invasive procedures but tend to have fairly low success rates. However, if followed up with a self-dilation programme the success rates are much higher.

There is now a new procedure known as Optilume which could be a good option for many men. This is basically just a dilation enhanced by coating the stricture with a chemical designed to prevent re-scarring. It promises to offer the best of both worlds, i.e. success rates approaching those of urethoplasty but with a procedure that is no more invasive than a traditional dilation and without the need for self-dilation afterwards. At the moment it only seems to be available on the NHS in a few places but I am hoping that this will change over time as more urologists learn about it, especially as it apparently does not require much additional training. It has been approved by NICE which is another bonus.

Edited by member 19 Sep 2024 at 11:17 | Reason: Not specified

User

Posted 19 Sep 2024 at 19:23

Thanks for sharing your stories guys, it is much appreciated. My flow had gone down to around 5 mL/s but 3 and 1.3 are both pretty "appalling". It does sound like there are a number of options available before you have to resort to a permanent catheter, which is reassuring. Periodic self catheterisation is a bit of a pain but it is better than putting up with five minutes of dribble every time you pee. I have some experience with self catheterisation when I was suffering intermittent retention shortly after my RP. In fact I still have the packs of 16f and 18f catheters. I will certainly ask about Optilume. At the moment I am just grateful to be experiencing a half decent flow although I am not sure how long it will last. Thanks. Chris

User

Posted 19 Sep 2024 at 20:58

Chris, probably not a story you want to hear and I don't think you could be this unlucky. I developed a stricture after robotic surgery and suffered with a slow flow. At around 14 weeks post of I went back into theatre and had a dilatation to stretch the scar tissue,at the same time they found the first of 4 surgical hem o Lok clips from the surgery.

My surgeon took a very conservative approach with the stricture, preferring to stretch it rather than cut into the tissue. I did have to have it done numerous times,2 or 3 attempts in not unheard of.

I was having my urethra stretched at 3 month intervals. My flow got down to 0.5 mls per second. Other issues came along with salvage radiation treatment so we never got to know how successful the stricture treatment was.

Urethra reconstruction was talked about but the radiation damage ruled that out.

Hope you get it sorted out.

Thanks Chris

User

Posted 19 Sep 2024 at 21:05

Thanks Chris. I do know your story and it's always in the back of my mind as worst case scenario. I do hope not

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