Incontinence after GreenLight and TURP procedures continues. Looking for hope.

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I posted about having GreenLight (GL) in March of 2016, and being totally incontinent since.  A second TURP was not helpful and neither was months of physical theraphy with TENS stimulation.   I suspected early on that something went wrong with the GL when the doctor came in for my follow-up, and I had been complaining about incontinence, and said, "I almost said no to your request for GL.  Then during a cystoscopy, his reaction (maybe a sigh, or gasp or groan) gave me a sick feeling.  I didn't say anything at the time.

I moved to another doctor at another practice by self referral.  He is great, but two attempts to implant an artificial urinary sphincter (AUS) couldn't be done because he found strictures, and a dilation and then a urothotomy didn't hold long enough to get the AUS implant.

I going to fly across the country to CA to see a top specialist in about 2 weeks, who has specilaized in urethroplasty his whole career.  If he can fix the strictures, then I would eventually have the AUS implanted.  However, I am concerned that it may not be possible after seeing the report of xrays with contrast a week or so ago.  It said this:"Urethra: Normal caliber and distensibility of the penile and bublar urethra.  Multifocal areas of narrowing along the membranous and prostatic urethra measuring 2 to 3 mm."

If it required having a prostatectomy, and urethroplasty to connect to the bladder, followed by an AUS, I'm willing to consider it.   It may take a major bite out of my savings (the CA doctor doesn't accept Medicare... so that would be out of pocket.)    

Ultimately, I may just have to live out my life in diapers and condom catheters.  Is there a better option?

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  • Posted

    Glenn - I certainly hope you can get this resolved and that you don't have to live your life this way. Yours is a cautonary tale regarding procedures that may or may not be ideal and thge need for mlutiple opinions.

    I can offer prayer and the name of one of the best Urologists in the country (Cleveland Clinic) if for some reason the doc in CA doesn't work out. I hope that he can get you to the point that you can get an AUS.

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  • Posted

    Hi Glenn,

    Have you had urodynamic testing post GL and TURP to help identify the type of incontinence and appropriate treatment? I assume you have therapy to try and strenghten your pelvic floor? Good luck moving forward.

    Jim

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  • Posted

    So sorry to read your story.

    Why would a  prostatectomy help at this stage?

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    • Posted

      To have an AUS installed, you need to be able to have a catheter installed for part of the recovery.  Before the most recent attempt to do the surgery, the doctor did a quick check with a Fr 12 single use catheter, and it wouldn't pass the strictures. ...Keep in mind that the AUS will be anterior (down stream) from the strictures, so if the strictures grow back afterwards, and I need dilation again, the cuff of the AUS could impede instruments from insertion up the urethra.  I did look up balloon dilation, and the size one doctor uses is a Fr 5, pretty small.

      If I'm interpreting the radiologist's verbal report, it seems the strictures extend from the posterior urethra into the prostate itself (see my post above).   So, I'm thinking the only way for me to ever have a stricture-free urethra would require removal of the prostate, and attaching the urethra to the bladder.  There would be no working sphincter, but I haven't had one (either the bladder mouth sphinter or the external sphincter) since March of 2016.   

      My leakage rate, if I used Depends, requires 6-8 or 9 depends per day. The weight of them wet runs about 3 to 4 pounds.  I usually use a condom catheter, tube and bag, during the day, but it irritates the penis, and the straps become uncomfortable by the end of the day.   So it's not a pleasant life.

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    • Posted

      I no longer go to the doctor who did the GL and Gyrus TURP to put me in this condition.  I had BPH, had never been in retention, but wanted relief from Nocturia.  I now sleep worse than before all of this, as I can have 300 or occasionally 400 cc in the bladder while sleeping on my back.  WHn that happens, it wakes me and that's 3 to 4 times a night.  Sometimes, the overflow is enough I have to a Depends change in the middle of the night. Accumulating urine in the bladder is just a matter of the bladder location being lower than highest point in the urethra on the way to the meatus.

      The first doctor's equipment for the cysto was pretty old, with the imaging on a CRT with, I would estimate, a 15" screen.  I had to twist my neck, and I couldn't get a good view.

      I have the surgical notes, but they suggest nothing amiss.  At my new doctor, I've had two cystos.  He has a large modern flat screen positioned where he and the patient can see it.   He has had to stop at the stricture points in both exams.The images are totally clear, as he supplies saline solution from a bag.  (The first doctor used water connected to a tap, I think, set to a trickle.  This caused a lot of bubbles that distorted the images.) 

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    • Posted

      That is part of the method used by the "surgical guru" in California when he does a urethra reconstruction.  His website says 3-4 weeks is the time with the superpubic.  He does reconstruction with either foreskin when you're not circumcised, or from the inside of the mouth. There is some sort of stint placed in the urethra duing the initial healing, but urine is kept out.

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    • Posted

      Then with the suprapubic you wouldn't need a prostadectomy? I've never had one, but at one point when I was having problems with CIC, I looked into it. You might also google "Mitrofanoff Procedure" and see if that might be another alternative.

      Jim

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  • Posted

    One way or another at this point you should get some qualified legal advice.
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    • Posted

      I actually contacted an attorney, wrote up and sent my story, and he said he wouldn't take the case.  I think the caps in this state are such, and statue of limitations that it's not worth the attorney and clients effort.

      I would just like to recover some quality of life for the 10 or so years I have left.  It's difficult to have been active and fit to have this happen.

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  • Posted

    Eighteen months ago my TURP left me with E/D and Incontinent plus Prostatitis, and not much improvement now with incontinence and E/D function is nil.  They now propose for me to have a Urodynamic test at the end of August to see if the problem is the operation of my bladder or the prostate growing back in.  I too am fed up with the scene, and have had Physio for pelvic floor exercises and that end appears to work.   Also now got urine infections back.  Hope things get better for you.

    David

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    • Posted

      David,

      I'm so sorry to hear of your problems.  Your surgical injuries seem even worse than mine, as I don't have E/D, and I only have the slightest irritation at the glans, which I attribute to the constant exposure to urine, either in the condom catheter, or the wet Depends.  I haven't kept close accounting, but I'm sure i've easily spent over $2,000 out of pocket for incontinence supplies over the last 15 months.  My trip to CA will run close to $3,000, with half or more for the doctor and the facilites charges (the later will bill to medicare, but not the doctor's $1200 fee.)   Even though I don't have E/D, there's been no sex as I just can't ask my wife to deal with my leaking.  Honestly, I would trade an arm or a leg to regain continence.

      You said the PT helped you.  Could you tell me to what degree?  For me, it was not of any benefit, except for maybe helping my core, but nothing for the ED.

      Glenn

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    • Posted

      Glenn, My word you have spent a lot of money, luckily we have the National Health Service which is free, but there are waiting lists. My Physio did tests using her finger in my back passage to check that my pelvic floor muscles were working correctly.  Just talking over problems with her helped my confidence as I was getting frightened to go out in case I had a bad accident, also used to get worried in case my pad slipped out and went down my trouser leg going down the town !. My main problem is dribbling and when I have a urine infection, I cannot pass by running water without an accident. As retired here get free incontinence products, catheters and medication.
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    • Posted

      Glenn, Just to add I found that stopping drinking at 8pm in the evening has helped me and when I have had urine infections I was advised to self cath before going bed to make sure my bladder was empty and not infected urine was being stored there, and that has helped.  Only get up once per night normally.

      David

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    • Posted

      I also stop drinking around that time, usually go to bed around 11, but probably produce 800 to 1000 cc of urine during a typical 8 hours, with 3 or 4 awaknings to go to the toilet.  I've if I'm sleeping soundly enough to not be awakened, I've voided as much as 400 cc on a few occasions.  (Two nights after the GL procedure, I was blocked, went to the ER and when then finally got the Foley in, I drained about 600 cc.  A painful night.

      Now of course, with the strictures, self cathing is impossible for me.

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