Posted , 5 users are following.
Hi,
I have had this issue for the past 16 years. I have had 12 dilatations and am still living with daily burning & pain. Does anybody know what the limit on these awful procedures should be before being referred for Urethroplasty?
0 likes, 18 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
jason26998 magicv
Posted
Is the pain when you urinate, or all of the time? What country are you in? I think you can request surgery as that's way too many dilation's.
magicv jason26998
Posted
Hi Jason,
Thanks for your reply, I am in Southern Ireland. How many dilatations would be the limit to be referred for Urethroplasty usually? The pain is when I urinate and for a while after, every time.
deb2722 magicv
Posted
I've had a stricture for about 20 years and have had about 15 dilations. I am nervous of urethroplasty - what if it doesn't work, does it leave you incontinent? No doctor has ever suggested it anyway. At the moment I am controlling it by self catheterising every week or so. Let me know if you find out any more.
Kellc1 deb2722
Posted
Hi. I posted previously about my having a urethroplasty last May 2018. Since I am not a medical professional I can’t offer advise, but can only relate my experience.
I am a male and my stricture was scar tissue in the urethra directly in the “tween” area. It was from a bicycle accident 50 years earlier. All I can tell you is that they cut my urethra (tube) on either side of the stricture, and threw it (the scar tissue) in the garbage. They then rolled each end of the urethra back (picture a flange), then holding the flanges against each other, sewed the flanges together working around the urethra. Sorry so descriptive.
I had the catheter in place for 3 weeks and then removed. No doubt the (tween) was uncomfortable for a few weeks, however I went back to my office job one week after surgery. It took a few weeks before I could mow yard on riding mower or ride my motorcycle.
I have no pain when urinating, could hit a beer can at 4 feet, and empty a full bladder in 10-15 seconds.
Erections are much better, as are ejaculations. Full and complete. Was it worth the cost and discomfort of the surgery? For me, no doubt about it.
magicv Kellc1
Posted
Hi Kellc,
Thank you for your reply, I am delighted for you that you have full function now and find your story very encouraging!
Sincerely,
Magicv
magicv deb2722
Posted
Hi deb2722,
I too am nervous about the surgery but
have heard that the success rate is 90% for Urethroplasty. It is now my final option but I think a risk worth taking for the chance of living the rest of my life free of this limiting and nasty condition. Hearing from Kellc is also encouraging!
Kellc1 magicv
Posted
I have read my post now again and see I failed to mention my point, which was to address your concern about possible incontinence. The feeling of a full bladder and the need to go comes from the bladder. A sort of release valve or sphincter (?) group of muscles releases or relaxes to allow urine to flow. I do not see how having a uroplasty surgery to repair a structure in the urethra would effect it. But I am not a Dr. obviously right? Find a good urologist. And get fixed!
deb2722 Kellc1
Posted
Thanks for your reply, and I'm very glad it worked out well for you. I take your point - I think I am just a bit worried that the sphincter would get damaged during an operation. Anyhow, none of the surgeons I've seen have even suggested surgery - I'm not sure how common an operation it is in the UK.
magicv deb2722
Posted
deb2722,
The best person to do the urethroplasty is Tamsin Greenwell & her team at UCLH London.
she has the most experience. They have a very high success rate. The risk of incontinence would be very low. This surgery is specialised for females as the condition is rarer for females than men.
Where are you located? I know that there is nobody suitably qualified in Ireland. Which is why I havent had the surgery and have been enduring dilatations that have been futile.
magicv Kellc1
Posted
Hi Kellc1,
Yes, I hadn't thought of it that way, although the surgery for females is more complicated than for men (anatomically etc)
Indeed, it would be wonderful to be fixed for once & for all !
deb2722 magicv
Posted
Thanks for that; I live in the south west UK. It is the fact that it is rare in women that worries me. At the moment I am managing with ISC, but I think I will ask about it if I have to have another dilation. Do you do ISC?
magicv deb2722
Posted
I have tried ISC before but found it too painful. Also didnt last, so futile. I hope to get the Urethroplasty later this year, so will let you know how it goes for me. Life is too short to be living with this condition!
deb2722 magicv
Posted
ISC is not easy, and is sometimes painful for me (if I leave it too long in between). Without it, though my stricture just closes up really quickly, so I have to keep on with it. I find it very stressful and difficult to do. I hope you get an op, and please do let me know how it goes. Best of luck x
magicv deb2722
Posted
Yes, it is not pleasant at all. Maybe you should make enquiries regarding urethroplasty for yourself. Tamsin is busy, so the earlier you enquire the higher you get on the list!
sure, I will be in touch. Thank you Deb
alan86734 magicv
Posted
Hi, Magicv and Others on this Thread,
What about the time frame? Are these procedures done during a single office visit, or perhaps overnight? If this is so, then that is where the difference is. In my own case I had a stricture in the prostatic urethra which I dealt with myself. My Uro felt that, because the origin of my stricture was "nurse-made" -- i.e. accidental -- there was a good chance that my approach would work, and it did.
I inserted progressively increasing sizes of catheter starting at Fr-8 and going up to Fr-18 over a total of 25 weeks or so. Not your one or two office visits by any means!
Does this fit your respective cases in any way?
Warm regards, alan86734.
magicv alan86734
Posted
Hi Alan86734,
Self catheterization is not an option for me. All of my dilatations were under general anaesthetic as a day procedure, a size 6 Fr would be difficult to get in..
alan86734 magicv
Posted
Dear Magicv,
So sorry to hear that. But, this is one of the benefits of these forums, we help you cover all the bases so that you do not walk alone. I wish you all the best in your search for a solution that does work.
alan86734.
magicv alan86734
Posted
Thanks Alan for your input and kindness, for sure the forum is helpful. I hope to have the Urethroplasty later this year which will hopefully give me a new lease on life.