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I have Urethra Stricture , need some suggestion for the details below .

Posted , 17 users are following.

rohit43331
rohit43331

I am 20 years old . I have been struggling from urethral stricture since 5 years .I had a Direct Visual Internal Urethrotomy (Visual Internal Urethrotomy) 5 years before .Since then I was on self-dilatation . After 2 years of self-dilation , my doctor recommended to stop it .1 year later I again developed some blockage . My doctor performed some dilation technique (don’t know exactly but was not DVIU ). Afterwards I was again on self-dilation .

Now , recently I had my uro-flowmetry test . Everything was good in the report . But , recently while doing self-dilation I feel the tube quite hard to push at last (the point where the urine is about to come ).I felt this from last 3–4 times(I do self-dilation once a week ).

I told the same to my doctor , he called me and performed the dilation himself (with same size catheter ) and reported everything fine . He said everything is fine , and told me some tricks to pass the sphincter muscle. But i again couldn’t do it , so now he has called me again and want to see inside the urethra with a cystoscope (He said  “Durbin se dekhna padega ” in Hindi . ) . I want to know what should I do in my situation and what could be possible reason for the trouble in dilation (I mean my doctor could pass) . Should I go for the method recommended by him ?

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  • livewire
    livewire rohit43331

    Posted

    I was thinking recently.  If they can fit a stent in the heart, why not the urinary tract ?  I guess it would depend on where the stricture is, but basically the stent keeps the heart valve open, so that should work.
    • kenneth1955
      kenneth1955 livewire

      Posted

      Good afternoon.  I had a talk with my doctor when I found out that I have a stricture They can put a stent in but if it does not work it is very hard to have them taking out.  They would have to remove that part of the urinary and with removing that inch or so you would end up with penile shortening.  Ken 
    • mar34647
      mar34647 livewire

      Posted

      Its a good question. For once the heart does not have erections, so stents would only be suitable in the back part of the urethrae. But your question is very good also in another respect: In non-invasive heart surgery, there are dilations carried out when people are in danger of a heart attack (Without stent). Why can this last and it apparently cant in the urethrae? Of course a blood vessel is not made out of the same tissue, and I am not a doctor... What I learned living most of my live in poor countries, is that the body wants to survive.

      In terms of research you would have to look to middle income countries if you are interested in dilation - high-income countries invest the little research there is on the issue (unlucky for us its a rare condition we have) on surgical solutions.

      Surely others have more insights.

  • schuyler13221
    schuyler13221 rohit43331

    Posted

    what were your early symptoms leading up to your diagnosis of the stricture? Were you urinating a lot? Any irritation down there?

    i think i may have a stricture from numerous catheterizations... i pee every 20 mins and sometimes feel a sharp sting pain in my urethra and am worried.

    schuyler

  • schuyler13221
    schuyler13221 rohit43331

    Posted

    what were your early symptoms of the urethral stricture? did you urinate a lot? any discomfort/irritation in the urethra?

    i pee almost every 20 mins and have irritation in in my urethra i think it may be a stricture due to my several catheterizations...

    please help,

    schuyler

  • cristian32813
    cristian32813 rohit43331

    Posted

    Hello, just got diagnosed with multiple strictures, I am so scared, is anyone there that found a treatment that work, also if the others that commented here before are able to see this, how are you doing now?

  • mar34647
    mar34647 rohit43331

    Posted

    I realise this is a very old trail, but maybe someone looking for information may find this useful. If you don't want to read it all: Be very very careful before you do any surgery.

    • Born with hypospadias, was corrected shortly after birth
    • Around age 28 started to see some while scar tissue on the glands which sometimes turn red suggesting inflammation. Went to urologist in a hospital, who said: We just have to cut the dead tissue away and sew the healthy tissue back together. According to him there was an urethral stricture close to the exit which was short
    • In the three hour surgery they stripped the entire skin down the penis and took 4 cm of foreskin with which they made what they call a "plastic". The idea is to connect that skin to the blood flow system and then have magically a fully functioning urinary tract. N.B.: I had this all my life, never noticed that it took particularly long in the bathroom even when standing next to other boys in public bathrooms. Also had no pain or infections.
    • I was two weeks stationary in hospital. There was a blood clot around my glands that hurt terribly. I asked them to give me something against the nightly erections. I was sure this is not helpful when this tissue wants to heal. (Why it was 4cm anyway when they talked about 1 cm anyway?) There is a medication but they were afraid that I would never have erections again afterwards ("It's psychological, not physical. Some people just don't have erections anymore". I said I was happy to sign a waiver but this is not going well. They didnt give it to me. At this time the urine was evacuated through a needle stuck directly through my belly into the bladder.
    • When I was released there was an amazing flow that I never had before
      • Just a few months later, the urinary stricture was back, and worse. "It's not a problem, it's just 1mm at the very front". Heard that before, but you kind of added 4cm. They would do a 15 minutes laser surgery. Lasers were in fashion at the time. Now they are forbidden in most hospitals for this procedure, because the burning of tissue does what? Create more scars! I had 2-3 of the laser surgeries over the years, always with relapses. I changed doctors.
    • About nine years after the initial surgery, they did a similar surgery with a cold knife, trying only to "hit" the already dead scar tissue. We also had to repeat that 1-2 times. But from then on, there was a 10 year period of total remission. And I learned my lesson: Do your research, take second opinions.
    • Now, its 30+ years later and due to the multiple surgeries rather than the initial very small stricture (also due to the Cathether use, which gave me once a really bad UTI), the stricture slowly "wandered" from the top where it started to way behind the visible part of the male organ. Luckily I found the only guy with more than 1000+ cases of buccal transplants. I do my check-ups with him. Knowing he likes the kick of 50k or 100k, I am always asking him for risks and alternatives. If I am really convinced it's a good idea, I may one day do the buccal or new technology thats now being researched surgery. But then I need to be either in danger of 1) permanent damage, for example kidneys or bladder (I am not according to him), or I need to have some huge discomfort for example in sexuality (which I have not, though it is slightly bent on the top to the many surgeries there). It doesn't disturb me and even less my partner.

    The fact is that due to my ignorance and lack of research, also due to my belief that "surgery is good. it fixes things", I had about ten surgeries, ten times general anaesthesia (the big one was only partial, OMG that was terrible), every time a catheter which further "irritatoin" on the urethrae, and today I have a lower urinary flow than before the first surgery. And due to the surgeries, things got so much worse that my last option that i am more likely to take if really my organs are in danger, is to move the urethral exit to the bottom. (Doesn't affect sexual function, I don't like the idea in principle, but in terms of a major surgery that would now be 8-9m of buccal transplant, which all that it could entail in terms of follow-up, risk and failure, that may actually be the least bad solution)

    I do want to say a last thing about dilation. It has a bad name. "It worsens things". "It's not a permanent solution". For me, those two sentences were true for surgery. Over the time, I was sometimes on a regime of dilation. I will say about dilation: "It's cheap", "it's non invasive", I would say. Remember my initial problem that was very close the the opening any only a few mm (afterwards 1 mm as they said). Could I go back to that time, I would have just dilated the very front, if necessary every day for the rest of my life. Look what surgery did to me!

  • mar34647
    mar34647 rohit43331

    Posted

    If you are still in this forum, I am sure it would be interesting for many of us to know how your story continued.

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