Urethral stricture diagnosed 5 months post op

User

Posted 28 May 2025 at 23:11

Things were looking positive 4 months after RARP, incontinence had pretty much gone, a few erections on stimulation, back to exercising and a family holiday. Then about 4 weeks ago my urine flow started to slow down and then the bladder became a bit more irritated, urgency and some incontinence returned. I assumed it was a UTI but that was all clear, GP then checked kidney function and again all clear but my urinary symptoms worsened and I was straining to pass 100/150ml. The oncology nurse arranged a flow test and ultrasound and off I went. My first flow test didn’t register and the second was described as that of somebody 90+! I feared what was coming when the ultrasound confirmed large urine retention. I was sent off to the emergency day care unit and the on call urology registrar swiftly came and carried out a cystoscopy, he found a stricture close to the bladder neck. Next task was six rounds of urethral dilation and then back to having a catheter fitted! I don’t know the next steps as yet, it’s in the hands of the consultant, I assume the catheter will remain for a few weeks. Hopefully a long term solution can be advised by him, the registrar mentioned a long term catheter or self dilation. Neither sound appealing, had anybody else had this problem and was there a solution? On a brighter note I get to go and collect my penis pump tomorrow from the hospital, ready for whenever the catheter is removed!!

Edited by member 29 May 2025 at 06:49 | Reason: Not specified

User

Posted 29 May 2025 at 00:48

JP ,I developed a stricture a few weeks after surgery, they also found a surgical clip in the bladder. I had a dilatation and a catheter for a couple of weeks. Once remyi could urinate well but the flow started to slow after a few weeks. We decided to take a conservative approach and performed numerous repeat dilatations rather than cut into the scar tissue. We did cut into the scar tissue and I did regain my continence after a few weeks.

I also did self dilatation. It is not unusual to need a few dilatations to fix the problem.

Thanks Chris

User

Posted 29 May 2025 at 06:06

I also had a stricture post RARP and urge and frequency as well. I hung it out for nearly 3 years. I never had retention but flow became unexceptable. In 2020 I had a dilation under general anaesetic. Catheter out after 5 days. Soon after, I started self catherterisation once a week. I've now had to increase to every three days, I think the stricture is slowly increasing in length and it's sometimes difficult to get passed. Eventually I'll probably need another dilation. There's a fairly new procedure used in some nhs hospitals called Optilume which I will ask about at my next follow up in December. Google it for more info.

www.mkuh.nhs.uk/news/first-optilume-treatment-at-milton-keynes-university-hospital

Dilation is not painful and really not to bad to do once you get the hang of it.

Good luck

Cheers

Bill

User

Posted 29 May 2025 at 10:27

I had a prostatectomy in 2020, following which I developed strictures for which I had a urethotomy and dilation under GA in November 2021. Since then I have been doing "self-dilation" (actually my wife does it for me !) currently once every 4 weeks. As in Bill's case, my consultant expects this to fail at some point, at which time I could repeat the cycle or investigate the possibilities of Optilume. My understanding is that the gold standard in the treatment of strictures where possible is a urethroplasty. This has a high success rate but is major surgery and not always appropriate. My hope is that Optilume will prove to have a success rate which is not much worse than urethroplasty but requiring a much less intrusive procedure. At the moment it is not available at many centres on the NHS but it is approved by NICE and I hope that it will gradually become more widespread.

Best wishes

Kevin

User

Posted 29 May 2025 at 17:53

Providing you get past the TwoC when it comes out, the usual management of this is by using intermittent self-catheterisation to keep the scar tissue open. Usually this is done something like once a day initially, but after a while you can slowly reduce the frequency. You may get it down to once every 1 or 2 weeks eventually. In rare cases, you might be able to stop, but there is a urology saying, "Once a stricture, always a stricture".

Strictures happen because of the way healing works. Scar tissue forms a framework to allow the healing process to pull the skin surfaces together as they heal. This works great when you cut your arm. Unfortunately, it doesn't work as well when there's an injury to the the skin lining a tube such as the urethra, where it narrows down the tube. Dilating opens it again, but creates an injury which needs to heal again, so it does tend to recur.

Being able to do intermittent self-catheterisation is a very useful skill for keeping you out of A&E with retention.

Edited by member 29 May 2025 at 17:54 | Reason: Not specified

User

Posted 29 May 2025 at 19:06

Thank you all for your replies, it’s reassuring to know that you’ve all dealt with this issue. I spoke with the urology nurse today and they’re still waiting for the consultant to confirm next steps but she expects me to have to carry out self-dilatation, gradually getting to once every two weeks for life! Probably like Bill it may be me and my wife attempting this as she was giving me the daily injections post op. Oh how life has changed!

I’ll ask about Optilume when I next go in, hopefully it will be an option in the future.

User

Posted 29 May 2025 at 19:27

Originally Posted by: Online Community Member

I’ll ask about Optilume when I next go in, hopefully it will be an option in the future.

I'd be interested to know the answer to your optilume question please

Cheers

Bill

User

Posted 29 May 2025 at 19:36

JP, I would be wary of letting your wife do it, unless she is a urology doctor or nurse. I didn't feel any pain as the catheter was stretching the stricture she could be doing damage if she gets the catheter in the wrong place. She could cause a false passage, if you are doing it yourself you can feel when it is in the right or wrong place.

I even had a full dilatation in hospital without any anesthetic. I always advise people to be very gentle.

Thanks Chris

User

Posted 30 May 2025 at 08:02

Just a couple of extra points:

a. on my wife doing it for me, this is because I knew that I would find it difficult to get the right trajectory,etc and I am very clumsy. But I should stress that this was planned in agreement with the urologist and we had a couple of training sessions with him. As it has turned out, she has been doing it for three and a half years now without mishap and I am sure that I would not otherwise have been able to do it.

b. on the intervals between dilations, everybody should of course follow the protocol prescribed by their urologst which will be tailored to their specific needs. Having said that, my impression from the research that I have done is that urologists tend to have differing views on the regime that should be followed. In my case he started me off on once a week and then we gradually extended the interval to four weeks over the next year or so. His view is that it is a kind of balancing act between the desire to keep the stricture open for as long as possible while minimising the risk of causing further damage by the dilations.

Kevin

User

Posted 30 May 2025 at 09:11

Kevin, sorry,that's what happens when I jump to conclusions.🙂. Hope you get a long term solution.

Thanks Chris

User

Posted 30 May 2025 at 10:34

Hi Chris

Thanks and there is nothing to apologise for. You made a very valid point which prompted my clarification. I agree completely that this is not something that you should just ask an untrained person to do.

Best wishes

Kevin

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