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Treating a Urethral stricture. Years of self dilatation? Urethroplasty?

Posted , 6 users are following.

will07728
will07728

Hi I'm a 33yr old male who feels he gone down a road he maybe never should have done...

My Dad was the first to open eyes my eyes to this condition after he himself developed a stricture due to the radiothereapy he was given to cure his prostate cancer. Although I'm thrilled to say he's come through the cancer this has been a new struggle for him & I've watched how it's affected him for many years on so many different levels. So sadly for me when I realised I was suffering with typical symptoms of the same condition (of which I have no idea the cause) I decided should get myself checked out.

After a couple of appointments I was referred to hospital & was given a flexible cystoscopy which showed I had indeed developed a 'very tight' stricture in the bulbar area of my urethtra. At that point it was suggested that a dilatation should be carried out to 'relieve some of my symptoms'.

Knowing my fathers situation with this at first I was apprehensive about going down this road. Although my symptoms were severe (straining whilst peeing, sudden/often needing to pee) I felt I was managing myself ok. Although I also knew something needed to be done.

After 2 more consultations & a final one with my GP I decided to have the surgery. Which meant by having the dilatation carried out, in my GP's words... 'I had nothing to lose'.

On the 22nd July the dilatation & a cut of the stricture was performed by a recommended surgeon. After the surgery he suggested that he would need/ to see me again to repeat/carry on with the treatment. As a result of the surgery I was given an indwelling catheter & told it was to stay in for 10 days. This I was not expecting as it was never explained to me nor had my father had this after his surgery. Prior to the surgery I was under the impression that I would be taught ISC (self dilatation) afterwards & therefore, as I understood it, there would be no need for a more permanent catheter.

After what was in the end 12 days my indwelling catheter was removed. I was then subsequently taught how to ISC and instructed to do this every evening for the foreseeable future with a view to decreasing the frequency(I aslo wasn't expecting that as when my father started he had to do it just once a week)

Six weeks have passed since then.

I'm delighted to say I no longer have the straining sensation when I pee or the need to go quite as often.

As for the self dilatation it's a case of good days & bad days. Some days I get a good flow I can go a full 24 hours with only needing to do it once other days I get blocked and need to do it several times. My social life has suffered a bit, taking catheters with me to the pub the other day wasn't much fun!! I'm always worrying whether or not I will be blocked when i need a pee. I know my anxiety over this makes the problem worse, but I'm now convinced I'm needing to cathetorize more often than when I started, not less as was intended!!!

My main worry though is I have developed some new symptoms/complications which are seriously making me question my decision to have the dilatation. As a 33yr old male I'm still sexually active but now worry those days could be over. I'm suffering from extremely painful erections which seem to be caused by a downwards bend in my penis which I've developed since the surgery. Sex/masturbation is extremely painful. I now have erectile dysfunction.

I think this is either a reaction to the surgery or the tube from the indwelling catheter has caused some kind of trauma due to my erections at night whilst sleeping. I, like I'm sure many men my age, get erections at night whilst sleeping.  I remember during those 12 days, whilst the indwelling catheter was in  waking up in pain at night several times due to this. 

Regardless I'm extremely anxious about this. The bend and the pain seem to be getting worse. I have spoken to my GP & support nurse about this & requested an appointment to see the surgeon who carried out the dilatation, of which I am waiting for an appointment date now. I'm worried that if I don't sort this out soon my symptoms will just get progressively worse. I also wonder if there is anything I can do now to treat these symptoms before they do get worse.

My only real gripe throughout this whole episode is that if there are possible side effects/complications from the surgery then why weren't they explained to me before I took the decision to have the surgery?

Having been told initially 'I had nothing to lose' by having the surgery done I'm now worrying if my outcome is the very much the opposite.

 I'm quite also quite sure the surgeon is going to want to carry on with further dilatations but I'm wondering at what cost? At my age I still want to be sexually active, which is now become too painful/difficult.

I've read forums about Urethtral strictures & was shocked to hear some men seem have gone decades with dilatations & SD then eventually had the Urethroplasty and been cured. I bet they wish they had it much sooner?

I'm now wondering how much it would be to get it done privately? I'm far from rich but to save decades of SD it may just be worth it.

If anyone else is going through this or has any advice please help it would be much appreciated. Strangely it's got me and my Dad talking again but it's always a great help knowing there are others out there.

Kind regards 

0 likes, 13 replies

13 Replies

  • 70srg
    70srg will07728

    Posted

    Hi, i have recentky gone through the 2 stage urethroplasty surgery (see my blog) and although its quite a long process, i am now fine. Like you i had a stricture and would often take over 5 minutes to urinate the have to go again half an hour later. the surgery has completely solved this.

    My uncle had the same issue about 30 years ago, he was in the navy and it was 'blocked' while in the middle of the atlantic! he has been self dilating for all of that time and although he has managed the process it is far from perfect and if he had the option earlier in life he would have gone for surgery.

    my suggestion would be to discuss the surgery with your GP and see if they can make a referral. The operation is still relatively new and only a handful of surgeons do it so you may have to travel. i was firtunate in that one of the surgeons works out of a local hospital, Epsom in Surrey. 

    • karenwilde
      karenwilde 70srg

      Posted

      Hi just a question about you urethroplasty. I have a 27 year old special needs son who after having a catheter inserted for double groin hernias has a urethral stricture. He has had it operated on several times to clear it out. The next option is urethroplasty. I am not sure if he is going to be able to handle the catheter through his stomach for 2 months and the pain after op. I would really like to hear how your experience was so l have a clue about what to expect. Thanks Karen.
    • 70srg
      70srg karenwilde

      Posted

      Hi Karen, the operation and pain after is not hugely painful however i did take painkillers for about 2 weeks after the first operation. the first procedure is by far the worst and he will need to be able to manage the wound as it really is quite shocking. The penis is literally split in two and i can opnly describe it as splitting a sausage in half. it is then left like this for 3 to 4 months so that the skin graft can heal. it really does take some getting used to and the pain comes in the middle of the night from unwanted erections, this causes quite alot of pain as the stitches etc stretch. 

      Nothing can prepare you for the initial shock of what the penis looks like after the operation but you do get used to it. 

      there is alot of weeping from the open surgery and then scabbing which of course needs to be managed and cleaned.

      please feel free to ask anything particular you want to as i too was not fully prepared when gojung for the initail operation.

    • will07728
      will07728 70srg

      Posted

      Thanks. Hoping for a referal at my next appomintment. Interesting reading your blog regarding your stage 2 Urethroplasty surgery, I wasn't aware of how intensive it was. Hearing your ref to a 'pierced barbeque sausage' threw me a bit lol.

      God to hear you've come through this ok. Do you know if repeated dilatations prior this surgery has a negative outcome on the success of the surgery?

      This is something i've read elsewhere.

    • 70srg
      70srg will07728

      Posted

      I never had to dilate prior to the surgery so it is not something i have come across. My stricture was about an inch long at the very top of the penis so this is why it was 'split' and left open. certainly something a surgeon could tell you. The damaged tube is completley replaced or at least it was in my case so any damaged tissue would be replaced anyway.

      the 'sausage' reference was actually told to me by the doctor who took the dressing off after the first surgery and he couldnt of explained it better, but you do get used to it.

      by the way i'm 44 years old and quite fit & healthy, this does have an effect on what they will do. so as with the previous comment, if you are older it may be more sensible to sd and not opt for surgery. 

    • Guest
      Guest 70srg

      Posted

      I had a meatal stricture March-May 2015, that is, one right at the tip of the penis, which was preventing me from inserting my catheters, and which prevented a surgeon from conducting a flexible cystoscopy. They simply dilated it under a general anaesthetic (presumably because it would hurt to dilate if I were conscious) before doing a rigid cistoscopy. They had to enlarge the hole from about 10Fr (3.3mm) to 20Fr (6.6mm).

      So far, touch wood, that dilation has held open without any apparent closing up again - it's been over three months now, and inserting catheters (12Fr) is consistently easy. I should say that while I had the stricture, inserting 12Fr catheters three times a day did nothing to dilate it; so self-dilation may not always be the answer to clearing strictures.

      The rigis cystoscope is quite wide, another reason for getting it under general anaesthetic; and I guess the reason I had a fitted catheter for a week afterwards was because it had stretched my urethra a bit and they didn't want to irritate the urethra with another 21 catheter insertions until it had recovered from the cystoscope.

      My meatal stricture was caused, incidentally, by the emergency insertion of another catheter back in February 2015. They didn't have time to be gentle! (Bacause I had stopped being able to pee, my overfull bladder was in danger of exploding, which would have been curtains for me.)

    • saad92006
      saad92006 70srg

      Posted

      Hi, I have urethral stricture and I had surgury but was failed.

      You told me that ur ankle was managed the problem by self dilatation.. can you tell me if ur ankle used catheters or metal dilators? And what is the frequency of dilation?

    • saad92006
      saad92006 70srg

      Posted

      Hi, can u tell me what is the type of dilation used by ur uncle in the past 30yrs.....Did he use the catheters to dilate or the metal diators??

      My 2nd question what is the frequency of this dilation.. monthly or weekly?

  • Guest
    Guest will07728

    Posted

    Hi Will,

    I can't comment on all the aspects of your post, but since Feb 2015  I have total urine retention (can't pee at all) and have to self-catheterise whenever I want to empty my bladder. I completely understand your embarassment at having to take catheters to the pub! My friends all know about my condition, which lessens my embarassment - I'm perfectly happy to talk about it ith anyone who'll listen! - and I've made myself a little carrying tube from the cardboard tube at the centre of a roll of tin foil, so that the catheters are at least not visible. You learn to plan for catheterising when you're away from home, and I know now to add an extra catheterisation to empty myself out before a night on the town! (Normally I self-catheterise three times a day, roughly 7am, 3pm and 11pm.)

    A fitted catheter is quite normal after surgery, to allow the wound to heal without urine passing over it all the time. I had one for a week after a rigid cystoscopy, and yes, those nighttime erections are really uncomfortable with it!

    The debate about self-catheterisation vs urethroplasty is balanced. On the one hand, how great it would be not to have to keep catheterising to keep your urethra dilated. (In my case a stricutre is not the problem, but a locked sphincter.) On the other, I hear that the scar tissue which results from surgery can result in recurring strictures and therefore recurring surgery. I'm 57 and probably not as sexually active as younger men! so the prospect of self-catheterising for the rest of my life, while not great, is on balance better than the prospect of repeated surgery on my penis. It may be for you that self-dilation will eventually correct your problem. But it does sound as if something has changed as a result of your surgery, Will; and I think you should go to your GP or indeed your surgeon and ask for advice.

    Hope some of this helps, and feel free to ask about anything you think I can clarify or explain better. Best wishes,

    Colin

    • will07728
      will07728 Guest

      Posted

      Thanks Colin that's a great help. Certainly not a decision to be taking lightly. Although an inconvenience I'm coping ok with the dilation, I just hope it improves over time as I worry about getting in a situation where I'm caught out. I'm sure I'll learn how to manage it better the more I become used to it.

      I s'pose the idea of having to do it for the 'rest of my life' is just one I haven't got my head around yet. Good to know others get through it tho.

  • saad92006
    saad92006 will07728

    Posted

    Hi, I have 2 questions please

    1.what is the type of surgery u had?

    2.Can u tell me now how is ur condition.....

    Do you still have painful erection and bending?

  • Snorey
    Snorey will07728

    Posted

    Will, I had the urethraplasty. Are you still looking for info?
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