Help understanding urethral strictures - Patient Perspectives

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Hello, Are you satisfied with current treatment options for urethral strictures? Would you be interested in helping develop a new type of treatment option for addressing this problem? I'm part of a team of bioengineers at Johns Hopkins University in Baltimore, MD working on a project that is seeking to develop a novel method to treat urethral strictures. I am seeking to understand what your experience has been with current treatments options and what your preferences are for alternative treatments.

I would to love to be able to have short phone interviews with anyone that is interested in sharing their experience, but this form can serve as a place to express frustrations or praises for your urologists ability to treat your strictures. 

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  • Posted

    To serve as a start to this discussion, here are some questions:

    How did you urologist introduce the options that you had to treat your condition?

    Would you be interested in sharing how many urethrotomies or dilations you've had to treat your stricture? 

    Did you have any complications with your urethrotomy or dilation?

    When did they tell you you should get a urethroplasty?

    If you had the option of an alternative procedure, what are the most important features to you? Number of visits associated with the procedure, preference of devices, like a urethral stent, left in your urethra, post-op care regime, recurrence rate of stricture associated with the treatment?

    Thanks so much for your stories and thoughts! It's really appreciated!

     

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  • Posted

    I'm leaving a comment only in order to follow the progress of this thread. I don't know whether or not I have a stricture, but after 2 MRI scans, a CT scan, several utethragrams and a cystoscopy my urology department has simply run out of ideas for finding out why I have total urine retention.

    I did have a meatal stricture, caused I believe by the crude and rough emergency insertion of a foley catheter during admission in February 2015 for the retention a year ago. The stricture was preventing the insertion of ISC catheters and a flexible cytoscope; they opted to dilate under general anaesthetic before conducting a rigid cystoscopy during the same operation, in May 2015. The stricture has not (as of February 2016) returned since that dilation. I self-catheterise in order to void, four times a day, which presumably helps keep any potential stricture at bay.

    Whatever the cause of my retention, it seems to be permanent - my bladder is very distended now by extreme retention, and exhibits only 20% of the muscle tone necessary to urinate. At admission last year it held around 2.5 litres of blood and urine, and it seems unlikely that it will ever recover tone and shape.

    I don't think my experience will be relevant to your study, but I am interested in following its progress.

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  • Posted

    In my case I was complaining two weeks after open RP about urinary pain etc

    by two months I was having a suprapubic inserted on a trolley in the hallway at midnight, so there was no real discussion about options, the next day a Urethrotomy was carried out on the bladder neck stricture. Two months later another Urethrotomy due to stricture closing again. Again there was no other options discussed.

    In hindsight if they recognised my urinary retention symptoms at the start then dilation could have been carried out instead of Urethrotomy. Self dilation should have been commenced after the first Urethrotomy. Why carry out a second (or more) Urethrotomys when the results are so poor and by doing so seems to have ruled out Urethraplasty in my case due to cutting close to the sphincter.

    My issue with the self dilation balloon catheter is the difficulty inserting it due to it's flatness when the balloon is undilated, which leaves the two edges feeling sharp. It does have the advantage of 26Fr when dilated.

    While the first Urethrotomy procedure was to fix the bladder neck stricture it caused another stricture in the urethra due to either the dilation or the catheter.

    I was told by my Uro that I'm not a suitable candidate for Urethraplasty due to the closenes of the stricture to the sphincter ..but I would prefer to hear that from the specialist.

    Regards alternative treatment: I would like a treatment that repaired the tissue preventing further Strictures without causing incontinence. Urethral stents seem to have issues with skin growth causing difficult removal of the stent. Stent migration also seems to be an issue.

    Regarding stricture recurrence: I cannot afford another Urethrotomy as my Urologist stated it would risk incontinence due to the stricture proximity to the sphincter.

    James

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    • Posted

      Thank you for sharing your experience James. I'm sorry to hear that your condition treatment has been so round-about. Bladder neck strictures are truly a nuisance and it sounds like yours has been very frustrating. I hope you can continue to get good treatment and have no more stricturing! Take Care,

      Joseph

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  • Posted

    My problems started about three weeks after having Turp surgrey in November when started to slow way down and split stream so in January doctor said had stricture sent me home with catheter and steroid cream did it everyday  for a week then once a week that only lasted for three days when slowed way down again started catheter again every other day but the catheters they sent in mail were small size and didn't work so got bigger size and after several days it has helped so back to every other day. Also going back to Doctor this Thursday for follow up and got a list of questions for them and hope to get more answers to find out hou long stricture and where they are at.
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  • Posted

    Hi glass

    I was diagnosed with std after 14 days of exposure and had given antibioticsome for seven days. Post treatment when I ejaculated I have got dysuria after 5 hours. Is this std caused urethral sticture?

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