Just say no to instrumentation to the urethra

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I just want to say if you have a urethral stricture or your doctor suspects you may have one, but you are able to empty your bladder without pain in a reasonable amount of time don't mess with it. Don't allow him to stuff a scope in your urethra because he will force through the stricture and make your life worse. IF you are lucky enough to not suffer any additional damage from the scope and you decide to have a urethrotomy believe me there's a good chance things will get much worse for you like they did me. NOT only can this cause more damage to the diseased part of you urethra, but the large instruments can likely cause damage from blunt trama as well as inflamation wich will cause more strictures as it did in my case. Having had a urethrotomy 13 years prior with no problems I thought what the hell i'll try it again. That was the worst mistake of my life I went from a 1.5 cm bulbar stricture that caused no pain to what i'm almost certain is a stricture the full length of my urethra and believe me that doesn't feel good. LIFE is over for me I will not put myself through a 2 stage urethroplasty I will stop using my penis first and have the surgery that would require me to sit like a woman to pee for the rest of my life. By the way i'm only in my 40s. SO for all you stricture patients out there if you can void your bladder without pain don't let them talk you into putting instruments in your urethra it's not worth the risk. THEY wouldn't do it to themselves they know better.

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12 Replies

  • Posted

    Niteowl,

    I'm not sure that your case is typical , I dealt with a stricture for 20 years of my life . I had six urethrotomy before I finally had a urethroplasty. My stream was very much slowed from the structure and it took me minutes to void. Just because you can empty your bladder does not mean you are not in danger . Over all the years of living with it , I did damage to my kidneys and bladder . Having the urethroplasty was one of the best decisions of my life . Each person needs to assess their situation , and find the right doctor and right solution

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  • Posted

    This echoes my own experience, although under different circumstances. My urinary sphincter packed up all together, preventing me from peeing at all. It was admittedly a serious situation, possibly life-threatening - in A&E they had to get over two litres of urine out of me before my bladder exploded! But the violence with which they rammed a huge three-way catheter into my urethra did so much damage that I had to return two months later for a meatal urethrectomy (if that's the right term). There was no attempt to insert a simple slim single-use catheter first, which would have been just as effective in taking the pressure off the bladder. Of course I'm no urologist so what do I know? But I do know this: the three-way insertion was the most painful thing I've ever felt.

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    • Posted

      That sounds like a horrible experience. What is the status on your meatus today? Is it free from stricture and pain?
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    • Posted

      It was scary. I'd been peeing blood for a few days, and the urine that they flushed out over the next four days was bloodred and full of large clots.

      I have to correct my previous reply - it was not a meatal urethrectomy but a meatal dilation. The stricture caused by the rough insertion was at the meatus and prevented me from using the Fr14 single use catheters I had been supplied with. Even the Fr12s they replaced them with were difficult to insert.

      Since the meatal dilation I am happily now painfree at the meatus and comfortably using Fr12 catheters four times a day, which I guess keeps any potential returning stricture at bay. I could probably move back up to Fr14s. There is slight pain most days as I push the catheter tip past the sphincter and into the bladder itself.

      I still can't pee without these single use catheters, and the dear old NHS has no further plans (20 months later) to investigate why that should be, so I guess this is me for life now. Better than being incontinent, I tell myself.

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    • Posted

      Well good luck to you I hope the dialation last a long time for you. You're a trooper I don't know that I could self cath.

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    • Posted

      Oh, you said since the meatal dialation you are pain free. Was the pain present only when you cathed? Or was it constant?
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    • Posted

      Self catherterising isn't so bad. It becomes very routine after the first 19 months! It does come with the constant risk of infection though - however careful you are with hygiene, you are ramming any infection around up your urethra with the catheter, and being unable to pee the urethra doesn't get flushed out the way it used to. I get about four UTIs a year, all treated with antibiotics. I expect that eventually I will start to build resistence to the antibiotics and run into problems there.

      The pain became more or less constant, probably because I was having to force those Fr14s through in order to pee. The act of insertion was increasingly sore, and although at first it was less with the Fr12s, soon that became painful too.

      I've read mixed things about the success of dilation, but I must say that in my case (done under general anaesthetic) it has held good for well over a year now with no sign of recurrence. Four catheters a day obviously help to keep it open!

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    • Posted

      Hi Colin,

      Sorry to be off topic and coming into this late, but as someone who has been self cathing for several years, your comment about UTI's and antibiotics stuck out. I hope they are treating only symptomatic UTI's and not just asymptomatic bacturia which will present the same as a symptomatic UTI clinically. Most people who self cath are colonized with bacteria but that doesn't mean they should treat with antibiotics.

      Jim

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  • Posted

    Have either of you discussed urethroplasty with your doctors ? Why live with constant cathing ?
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    • Posted

      In my case they don't know what's wrong, so a urethroplasty isn't indicated. There's no sign of stricture apparently, after every sort of scan known to the medical profession - CT, MRI, X-ray, urethrogram ... All anyone knows is that the sphincter isn't working - isn't releasing to let the pee out.

      There's no sign of any scar tissue to explain the massive amount of blood they found in my bladder. "We may never know," they told me. I'm not thrilled about that, but cathterising is a better prospect than risking further damage and possible incontinence after a botched operation.

      There are in fact advantages to self-catheterising - you can schedule your peeing with reasonable accuracy, avoiding awkward interruptions at bad moments.

      The down sides are the risk of infection, the overuse of antibiotics, and the fear of one day being stranded somewhere without access to catheters for more than 12 hours (which is the longest I'd be comfortable waiting between catheters).

      I'll be 60 next year, and I admit I might feel different if I were in this condition at 30 or 40.

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    • Posted

      I'm no doctor, but sounds like nerve damage if your sphincter is not working.

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    • Posted

      Yes, I agree. Urology passed me on to neurology in the end and they couldn't find anything either.

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