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Early stricture reoccurance

Posted , 6 users are following.

Cjones0712
Cjones0712

I had symptoms of pelvic pain and unable to empty bladder. I had a cystoscopy and they found a stricture. During the exam my urologist preformed a dialation during the exam. I had soreness the next two days but my urine symptoms were better night and day. It only lasted one week and now I can't pee again. Has anyone had a reaccurance that soon? Should I continue with more dialation or have urethroplasty?

0 likes, 18 replies

18 Replies

  • david60128
    david60128 Cjones0712

    Posted

    I am a 70 years old male. I was diagnosed with urethral stricture at my age of 25. I have had numerous urethrotomy done over the past years. in 2005 I was persuaded to do self catheterisation which meant that for nearly 10 years I did not need to have any urethrotomy. My stricture is very close to the Sphincter and so urethroplasty is not an option open to me. I have had to have a urethrotomy done a few months ago and am undergoing a second one right now. The prognosis is that I will have to continue with self dilation for the rest of my life. This is an easy and painless process and one that you will get used to in time. 
    • ollie64
      ollie64 david60128

      Posted

      Hello, you have had a stricture for the last 45 years?! Ouch, I thought these last 14 months were bad enough, how many urethrotomies have you had? Mine too is in the deeper end of the bulbar urethra, about 1cm below the sphincter, they haven't said that the open surgery isn't an option for me though, i had my first urethrotomy in may and it came back to the point where in September It reached the block off point, where I had a bad experience with A&E to force a catheter through the stricture to relieve 1.4 litres after 2 hours of staff pratting around and not thinking acute retention was an emergency. And i had that changed to a suprapubic catheter 4 weeks ago, spoke to a urologist running the OPEN trial on Friday and agreed to participate, as I couldn't make a decision on either a repeat urethrotomy or urethroplasty, as I wanted relief ASAP, but I wanted to be cured, not maintained, I have been randomised into a repeat urethrotomy, which has been put forward for an urgent op, so should be within a few weeks. Last time I didn't have a catheter left in place or have to do intermittent self dilation, may be why it came back so fast, this time I think I will have to.

      What do you use? A re-usable catheter or disposable single use ones?

    • david60128
      david60128 ollie64

      Posted

      I use a single use Lo-Fric Neleton catheter, ranging from size 14 down to size 8. Since my last urethrotomy I have been using a size 14. My advise would be to keep using the higher sizes soon after the operation and not to allow the scar tissue to build up. There was a period of about 9 years when I was using the Lo-Fric catheters when I did not have to see the Urologist. Before that I was having very regular urethromies. I have lost count of how many have had in the last 45 years.

      My Urologist was trying to persuade me to do ISC for a long time and I was reluctant to do it because I thought that it was going to be painfull. Once I started using it, I feel fine with it. Just be careful with hand hygiene and be sure to use clean drinking water to soak the catheters in before using it.

    • ollie64
      ollie64 david60128

      Posted

      Only a 14 french? I'd of thought they'd advise a larger one. I have heard using cooled boiled water is good as sometimes tap water can still carry some contaminants,  how often did / do you have to use them? Iv heard it's once a day for a few weeks after the op then twice a week for a while, then once a week. I'd rather keep the urethrotomies to a minimum but at the moment I don't know if I'm actually a candidate for the open surgery as it is just after the curve where it curves to go up toward bladder. 1-2cm from the sphincter and prostate.

      Did the repeated procedures not cause the stricture to become worse, or have any accidental side effects? Such as effecting "function". Iv heard there are possible side effects but not as prominent as thone of the open plasty option including loss of sensation from accidental cutting of nerves, erectile dysfunction, and shortening of penis, apparently these side effects are low chance but still present possibilities. I'd rather not risk them as I'm only 22 rolleyes 

    • david60128
      david60128 ollie64

      Posted

      You are correct to worry about the after effects of urethoplasty. At your age of 22 you have a lot more to lose if things go wrong.

      You are right, cooled boiled water is good enough for the single use catheter.

      Yes, I could go on to higher sizes. My Urologist was suggesting 16 french. In fact the Catheter that I had fitted after the operation was 20 french. I am now using 14 french and plan to do it once a day. In fact the advice I got was exactly what you have been told - start with once a day moving on to once every two days and going on to once a week. My problem was that I got lazy and had to resort to 8 french in order to keep an open passage after year 5 or 6 and after year 9 I had a near total closure although I was able to keep it open by forcing a 8 french catheter.

      My stricture is exactly in the same location as yours and so urethroplasty was ruled out.

      I have got along well with ISC. You need not fear it.

      Good luck.

    • ollie64
      ollie64 david60128

      Posted

      I'll ask them for wider ones in order to keep the regrowth to a minimum,  yeah at my age Id rather not lose any function. Hmm if ours are in same place and they told you the plasty was a bad idea then i guess they will be hesitant about doing the plasty for me should it come back again. It should be just reachable but I tend to think their worry would be effecting the sphincters function. Is that the reason they wouldnt do it for you? With it being too close to the sphincter they worried they would make you incontinent by destroying the sphincter function?
    • david60128
      david60128 ollie64

      Posted

      Yes. Closeness to the sphincter is critical. I have seen at least three different urologists in three differrent cities and they all came to the same conclusion. At your age, keeping that part of your anatomy is vitaly important.Doing self catheterisation has nover been a problem and minimises the risks to that area.
  • delores01834
    delores01834 Cjones0712

    Posted

    Read Office Dilation of the Female Dilation by Dr. Richard Santucci. He also has other information about true urethral stricture. Readvalso Dr. Harriet SCarpero titled "It's Not What they think

     I.do know thatnDilation and another procedure which I had called "Internal Urethrotomy as of 1986 sucess rates are low in women. You MUST make sure if you have the Urethoplasty procedure whoch is suppose to be a higher cuccess than the other two that the DR has EXTENSIVE surgical training in performing this procedure on WOMEN

     The doctor who misdiagnois me had a good record of being a scholar bbc.coy doctor nutvafter he made me incontinent it was discovered that he did many surgeries on men versus o. Women

     So hw did both, yes, but not enough to make me incobtinent. Read Dr. NItti, Dr. Blavias and especially all the topics on Female Urethral.Strictures with Dr. Richard Santuccj.

    Dr. Blavias has an article about zdilations and Urethral Stricture about 17 women that tgey did  .  Surgery to like the procedurebuou're considering and the results I think its called Management if the Female Stricture.  Ms17012@gmail

  • ollie64
    ollie64 Cjones0712

    Posted

    Hello, i'm a 22 yr old male, but this may help anyway.

    I had a procedure in may called a urethrotomy, they usually try this first, it involves a rigid urethrotome scope which is inserted into urethra, up to the stricture, and a small knife comes out the end and cuts through the scar tissue to re open the urethra, mine came back in September and fully blocked the flow and i had to have a tube forced through it as I had one and a half litres stuck, I then couldn't tolerate the tube after 35ish days and was changed to a suprapubic tube which I still have now, I am due another urethrotomy within the near future, probably within November, I entered the OPEN trial and was randomised into repeat urethrotomy, but this time I will have to do intermittent self dilation to keep the stricture at bay, I found results on another site where a hospital did a study on about 180 people who had urethrotomies, about 60 did self dilation and the rest didn't ( I didn't after my last op) the ones who didn't had their stricture come back on an average of 160ish days, and the ones that did self dilate it was an average of over 700 days until recurral. 

    Urethrotomy usually fails over time, is mostly just maintenance for temporary relief, sometimes lasts up to 4-5 years, on average 1-2 years, but with repeated ones it comes back faster, urethroplasty is open surgery, they either cut the bad segment out of its short, and re attach the healthy ends, or if it's longer they take a graft from inside cheek to fill in the cut out segment, usually 95% permanent sucess, the recovery is far worse and there are worse possible side effects, only like 1-5% but still, there may be alot of people put bad reviews online, but people will always post a bad experience, but hardly anyone posts a good experience so don't worry from the number of bad reviews you find.

    the wait time for urethrotomy for me earlier this year was 2 months, plasty is 3-4 months. When i saw a professional urologist 3 days ago he has put me forward for an urgent one so should be within 1 month, I am relying on this belly tube 100% at the moment. The urologists will quote 50% sucess rate for urethrotomy, this is only a guess, they don't have much stats and figures to go on yet, the reality is urethrotomy will work at first, but will most Likley return in the future, all it is is a cut, cuts heal over time, depends which you would rather have to deal with. There is a small chance that urethrotomy could permanently fix it, but the stricture needs to be a short and easily fixed one.

    If and when mine recurs I will want the plasty. It is only available in main hospitals as specially trained surgeons are required ( only a few dozen that perform them)  and it takes 3-4 hours whereas the urethrotomy takes 30 mins and can be done by most urologists.

    Hope it all goes well

    • david60128
      david60128 ollie64

      Posted

      I recognise all what ollie64 has been through. I would add that I had a spell of nearly 9 years when I relied entirely on ISC (Intermittent Self Catheterisation). My advise would be to be diligent and do regular ISC after you have had your urethrotomy. At times I used to leave it for once a fortnight. With hindsight, I should have done it even if I felt no requirement for it. I have now had my latest urethrotomy and I plan to do ISC practically every three or four days. I have no problems with ISC and hope that I would not require another urethrotomy.

       

    • david60128
      david60128 ollie64

      Posted

      I recognise all what ollie64 has been through. I would add that I had a spell of nearly 9 years when I relied entirely on ISC (Intermittent Self Catheterisation). My advise would be to be diligent and do regular ISC after you have had your urethrotomy. At times I used to leave it for once a fortnight. With hindsight, I should have done it even if I felt no requirement for it. I have now had my latest urethrotomy and I plan to do ISC practically every three or four days. I have no problems with ISC and hope that I would not require another urethrotomy.

       

    • david60128
      david60128 ollie64

      Posted

      I recognise all what ollie64 has been through. I would add that I had a spell of nearly 9 years when I relied entirely on ISC (Intermittent Self Catheterisation). My advise would be to be diligent and do regular ISC after you have had your urethrotomy. At times I used to leave it for once a fortnight. With hindsight, I should have done it even if I felt no requirement for it. I have now had my latest urethrotomy and I plan to do ISC practically every three or four days. I have no problems with ISC and hope that I would not require another urethrotomy.

       

    • ollie64
      ollie64 david60128

      Posted

      Hello again, I have been thinking about how you said you weren't a candidate for the urethroplasty because of stricture location, i have found out for myself that mine is after the cowpers gland, because the produce of this gland which sits just below the sphincter is still able to come out, but nothing else including semen can get past,  and looking at the anatomy of the area, the sphincter is right on top of the cowpers gland, like 1cm above, so that leads me to believe my stricture is within the sphincter or on the face of it, which would compromise a anastomotic Urethroplasty including removal and closure of healthy ends. 

      I have had a retrograde urethrogram and voiding cystourethrogram a few weeks ago, and no one has said to me that I aren't a candidate, i wouldn't want to become incontinent from them damaging the sphincter. I just hope they don't cut too deep in the repeat urethrotomy and damage its function.

      I still haven't even received an appointment for the repeat urethrotomy as an urgent one, i was told 3 weeks and was referred over 2 weeks ago.

    • ollie64
      ollie64 delores01834

      Posted

      Yeah I was going to ring up tomorrow if there's nothing in the post with an appointment. I'll talk about the eligibility for the big op when at the pre assessment when i see whichever urologist is handling me this time round. Thanks
    • david60128
      david60128 ollie64

      Posted

      I agree with delores that you should discuss this with your urologist. I can only tell of my experience and state that there is nothing to fear about continued use of intermittent self catheterisation.

      Good wishes

    • Guest
      Guest david60128

      Posted

      I've been contributing to the "My Urethrotomy Experience" thread here. I'm a 57 year old male. I'm interested in the relatively low frequency of your ISC, Ollie and Dvid. I guess that means you still have urinary function. I have 100% urine retention, and have to ISC three times a day with 12f, which after 12 weeks still do not go in easily.

      I suspect the tightness is because of a stricture caused by the rough insertion of a 20f catheter in hospital. I wonder if I should be trying a larger size to attempt to dilate - I certainly think using a smaller size would only encourage any stricture. But after a few weeks with a 14f it became more and more painful, not easier; so I switched to 12f.

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