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Urethral stricture

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davidh35
davidh35

I had a complete urinary retention in late March after a year of typical enlarged prostrate problems. Saw a urologist who went in with a scope and said prostate was 2-3 times normal and bladder was like that of an old man though I'm in early 50s. A month later I had the TURP procedure which I don't want to debate since I already did it. At two week checkup after the TURP my urination stream was strong, only problem was it was very very thin. Another urologist I ended up seeing the next week tried to insert a catheter to see if there was any resistance and he was unable to and said from what he could see I had a stricture and was urinating out of a pin hole. He suggested a dilation procedure which I agreed to the next week, about 4 weeks after TURP. Had it done and he said keep catheter in for 4-5 days then he took out and said self-dilate for two weeks and that should do it. I did as instructed but now 3 months later, my urine stream fluctuates between just ok in width to sometimes very good in width. However, one day a few weeks ago, right before I was to leave in a trip out of the country, it got really thin again and scared me so I tried to self-dilate again and I could not get it in. The next day it was wide open urine stream but next few days it was narrow again. I tried once more to self dilate unsuccessfully. Other than that though, I have a strong fast urine stream, no pain, and I seem to completely void as far as I know. But I went back to the urologist and he again tried to insert a self-dilator and he also with considerable pressure could not do it past about half an inch. The stricture is about a half inch to an inch in the head of my penis. He is saying we need to do the dilation procedure again with a longer regimen of self-dilation afterwards (daily two weeks, then every other day, then every third day, then maybe weekly, etc). My concern is that I've had procedures putting things in my penis almost every month since April and everytime that is done, I think it just keeps the problem going. Plus it is not a cure and it will constantly recur. I could take re-doing it every couple years or so, but not every 3-6 months. The only high success rate cure I know of is a urethroplasty. That scares me though. Honestly the most scary is the weeks of catheter afterwards. Looking for others thoughts on these things or your experiences.

0 likes, 11 replies

11 Replies

  • arlington
    arlington davidh35

    Posted

    Try learning to self cath w/ coloplast male compact.  It becomes a lot easier than you think and gives you a lot of peace of mind.
    • Howard31850
      Howard31850 arlington

      Posted

      Hi arlington - could you please give us just a brief history of your use of the coloplast catheters - like what your condition is and what is was like learning it and your situation today? Thanks.
    • arlington
      arlington Howard31850

      Posted

      Hi Neil,

      I went in to acute retention due to taking antihistamines for hives (who knew?) in July '14 and had several unsucceful attempts to void without catheters (maybe worst pain/discomfort of my life each time).  I was on an indwelling Foley catheter for 2 1/2 months.  My urologist advised me at the outset to get off this and learn to self cath as it is much more natural and gives you the opportunity to pee naturally all day long if you can and then self cath when you have to.  I couldn't get my mind around self cathing for 2 1/2 months - mostly because of the idea of it and I also thought it would be as painful as when they inserted the cath.  Well: he was right and I was wrong.  a nurse taught me how to do it in 10 minutes and I learned to do it with minimal to no pain in a few days.  [i've tried several and find that the coloplast male compact work the best for me]

      A year later I had the PAE at UNC health center with Dr. Ari Isaacson; however my chances of success were not as good due to enlarged median lobe and the fact that I was still having to self cath.  It helped maybe 5-10%, mostly by reducing my nighttime bathroom trips from about 4 to 2.   Dr. was great and very honest about chances but I went ahead because of minimal invasion and the fact that it doesn't preclude anything else down the road.  That was a year ago.  I've decided my best option is to continue self cathing until they figure out something relatively non-invasive that works for median lobe.

      By the way, I'm on Rapaflo which helps some w/ minimal side effects but does cause retrograde ejaculation.  I would use Alfuzosin instead because of better side effect profile but, in my case, it caused breathing problems.

      I hope this helps.  Good luck! 

       

    • johnguild
      johnguild arlington

      Posted

      Thanks Arlington for the input on self cathing.  I had the same concern with self cathing as you did.  Its good to know that you were able to do it without a problem.  Given my prostrate issues (BPH) I could also find myself having to self cath in the future.  My uro has mentioned TURP as an option but if self cathing could be done instead then that would be my inclination.

       

    • Howard31850
      Howard31850 arlington

      Posted

      Thanks arlington for that outline. How many times do you self-cath and can you pee ok on your own in between but with a high pvr? Like you I had a PAE 7 weeks ago at UNC but there has been no improvement - in fact my BPH has worsened and I must now get my head around CIC for all the reasons you outline. But unlike your case I was considered an ideal candidate for PAE with a very large prostate (280gm) and no obstructions like a median lobe. I guess I was just unlucky - the procedure was a great technical success but a clinical failure for me.

      Thanks again and all the best. Neil

    • arlington
      arlington Howard31850

      Posted

      Hi Neil,

      Sorry to hear about your less than stellar results from UNC.

      I cath from 2-5 times daily.  Usually 3, average of about  400-450cc's each time. 

      I was just doing it once or twice daily but I think my bladder was having to work too hard.  My urologist said if the average cath volume is under 200cc's I'm probably cathing too often and if it's over  450 I probably need to cath more.  The thing is, the ratio of natural voiding to cath voiding was much better (about 1 to 1) when I was only cathing once or twice - probably because my bladder was forcing more out before whereas when I increased the cath frequency there was no need to do that.  Now the ratio is 4 or 5 to 1 in favor of the cath volume.

      I think you'll find self-cathing very doable - esp. if you can make sure your insurance covers the colpoplast compact male catheters - when i discovered those it was much better and more convenient.  I had to go throug several distributors before finding one who would accept what the insurer offered. 

      Don't get me wrong - I realize it sucks that we're in this position; however, I'm not willing to do the more invasive procedures and am "reluctantly content" to go on like this until they come up with something better - even if it takes several years. 

      Despite our experiences I still believe in the PAE and think a lot of Dr. Isaacson.  By the way, he told me that the most improvement comes in the first 3 months and that many people continue to improve for 6 months - so I think there is still cause for you to be hopeful - at least for a few more months!

    • Howard31850
      Howard31850 arlington

      Posted

      Thanks arlington. You mention you prefer the coloplast compact catheters. Did you try the coloplast speedicath coude tip catheters? These are the ones I have access to and they seem convenient being pre-lubricated but do you think I might find the ones that you use to be easier for me?

      Thanks also for you comments about my PAE. I wasn't as impressed with him but I did love his staff. He just seemed aloof and uncommunicative with me and since the procedure has been quite dismisisve. But that was just my experience and I know many men like him. Take care.

    • arlington
      arlington Howard31850

      Posted

      I did find them much easier.  The first half (that goes through the prostate and sphincters and in to the bladder) size 12F and flexible, the second half (that only goes in the urethra) is more rigid and 18F and much easier to guide.  I find them less painful and quicker to insert.
  • johnguild
    johnguild davidh35

    Posted

    Hi David, I'm not doctor, and I do not have exactly the probelm you have so I can not provide any real useful info to you.  But, I had a similar concern running uro tools in and out my my penis/ urethra .  Wiithin the last 60 days I've had two stones removed, a Rezum procedure on my prostrate (to rduce BPH), and 5 cycles of a foley catheter.  And, I thought; is all this this movement of tools through my plumbing causing damage?  In your case it just be might, but I don't know.   Good luck in your recovery.

     

  • randy_85492
    randy_85492 davidh35

    Posted

    Please explain dilations.....What is that?.....I don't trust urologists anymore and I feel most urologists are not as professional or as knowledgeable and experienced as thet should be. Also, there seems to be a lot of variables in patient symptoms and, thus, treatments for specific patient prostate problems which the urologist you are seeing may be familar with but not trained nor experienced in treatments that are the Best for your symptoms....This mis-match in knowledge and experience causes a lot of complications and long-term problems for prostate patients...I realy don't know if my prostate problem will ever be resolved...Frustrating!...

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