HoLEP - Out of the frypan...........

Posted , 7 users are following.

and into the fire........Had my HOLEP and bladder neck resection 6 months ago. REALLY tough first two weeks - could hardly pee at all, just dribbling. Improved slightly but never as I thought it would be. Anyway at my last urology appointment flow less than 3ml. Urethroscopy revealed a 1cm dense bulbar urethral stricture , so I am in the approximately 1% of HoLEP patients to suffer this problematic outcome. (damm!!!) I am now three weeks post urethrotomy . Flow is great now but reading about strictures it seems I am worse off than the original problem and in all likelihood will now have on going problems and probably need urethroplasty as the 1 year success rate for the urethrotomy approaches 0%.

Just wondering if anyone else has experience with urethral stricture treatment post HoLEP ? thanks.

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16 Replies

  • Posted

    Damn Pete. With that kinda percentage on hits, You should go buy a few Lotto tickets !

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    Butt seriously Brother, I'm sorry to hear of your pain. I believe the original Uro for the HOLEP and or the Uro for the urethrotomy are covering the costs for your continued care and treatment. If not, you might want to consider discussing this with Legal Counsel.

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    I will keep you in my prayers, that everything from here on out works to your best benefit.

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    Take care,

    Chuck

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    • Posted

      No such luck Chuck,

      The $$$$ are disappearing down the toilet faster than my flow, but if I can avoid it I dont want to spend the rest of my life self-catheterizing and dilating. It is really unpleasant. I will go with the urethroplasty and hope and pray (and pay)

      Damm !

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    • Posted

      Pete,

      Sorry to hear of your HOLEP experience and hope things improve for you. I am relatively new to the uro game after my "massively distended bladder" was discovered by CT scan during an ER visit after a bike spill. After flunking my urodynamics test, I began self-cathing about 2 months ago with the hopes of rehabbing my bladder enough to pee naturally without a cath. I have read and am encouraged by others on this forum with similar experiences who have been successful with the CIC regimen enough to lose the catheters without the need for risky surgical procedures with bad outcomes like yours.

      Curious how long you were self-cathing and how you decided to opt for the HOLEP? My uro also does HOLEP but says no use considering a surgical procedure until my bladder improves ("no use expanding the pipe until the pump is working") so I will be lurking here researching experiences like yours while I continue my CIC rehab process.

      No, it is not a pleasant undertaking, but I took to it relatively easy which I was grateful for after reading horror stories of others experience, and have become pretty much habituated to it, much like brushing my teeth as another member characterizes it.

      Thanks for sharing your experience here and I look forward to positive updates from you going forward!

      Patrick

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    • Posted

      Hello Patrick.

      I have never had to self catheterise. No bladder or kidney problems just very poor flow, up and down 5 times a night and increasing frequency of UTIs. So at urologist recommendation I had the HoLEP and bladder neck resection.

      Should have been the end of it. The "Gold Standard"

      The urethral stricture is from damage due to the catheters during the procedure and occurs approx 1% of HoLEPS. Just plain bad luck for me.

      from my reading self cath and dilation after urethrotomy ( to release stricture ) can make things worse in the longer term so I have refused. Unsurprisingly I have a bit if a grudge against catheters now. The urethrotomy will either work or it won't. If it doesn't I will have a urethroplasty. I am more questioning of my urologist now - it is my body not his.

      Thanks for your kind comments.

      Damm!!

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    • Posted

      Hello Patrick -

      First just want to extend my hopes and prayers to Pete for a speedy and good resolution to his problem.

      I was faced with a similar problem to yours about 4 years ago and was told I needed an emergency Holpe or robotic simple prostatectomy as my bladder was fully extended and my kidneys were showing signs of stress.

      I went home and took Prednisone to enable me to pee while I searched the internet and found this forum and jimjames. I had never heard of CIC before but with his guidance and others here I learned to do it. As jimjames promised it became routine after a year and now with 5000 CICs under my belt (!) it is faster than flossing my teeth.

      I have rehabilitated my bladder muscles during this period to the point that I can half empty my bladder on my own and the rest with the catheter. I've never had any urethral issues but I do get a UTI once/year which I used to get anyway. A recent cystoscopy showed that most of the bladder trabeculation that was present 3 years ago is now gone.

      I hope this helps and will pray for kiwipete .

      Howard

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    • Posted

      Hey Howard,

      Thanks for your encouraging words! Yes, Jimjames was my main mentor after I found this forum and I hope to share in his success with CIC and like you and him, in no hurry to rush into a risky surgical procedure with little chance of success.

      Curious about your use of prednisone...was this prescribed? Were you not able to pee at all before taking it? Before 5300 mls were drained from my bladder in the ER, I was urinating regularly but was unaware of the retention until the ER visit and CT scans. After my bladder was drained, I am not able to pee at all without a catheter. Hopefully this will change as it has for you.

      Patrick

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    • Posted

      Depending on how much blockage you have, it might make sense to do something now. You can probably function pretty normally with 60% bladder function which you may well have. The obstruction is probably the trigger and cause of your problems and eliminating it might allow something close to normal function.

      I'd get a couple of opinions and regardless, wouldn't do Holep as a first option. I'd try something like Rezum less risk, no side effects, less down time and comparable results for most.

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    • Posted

      Thanks for your reply, second and third opinions worth considering I suppose, but I have the feeling my uro is taking his cues from me as I go in with my own ideas of what I want to do, and for now, that is avoid surgical procedures and give CIC a chance to work as others have done with success, as well as continue researching options.

      Any idea if Medicare covers second and third opinions? I am retired and on a set income level, so economics is, for good or bad, an important factor for me. Medicare and Medigap cover 100% of my current care, including catheters and a catheter nurse who makes house visits and is very responsive to my concerns.

      I will ask how much bladder function I have on my next visit. I suppose the urodynamics test reveals this? I failed my last one miserably, but was advised my bladder is "not dead" as there is "some pressure", but many years of distension has caused nerve damage. I do however, feel more and more urges and feel like something is happening down there, so keeping my fingers crossed and exercising the detrusors while doing CIC.

      Patrick

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    • Posted

      Medicare should cover second and third opinions, so money shouldn't enter into it at this point.

      There is no risk to continuing with CIC once you get the hang of it. Doing it will stop any further bladder damage in its tracks and allow your bladder to rehab. It all comes down to how much of an inconvenience CIC is for you. If you remove the obstruction, you won't cause any more damage by trying to go naturally and there is a mid point where you could fail a urodynamics test and can still function without a catheter. In your case, recovery from Rezum would be almost a non issue because you're already Doing CIC, so other than a few weeks of semi bloody urine and possibly some short term urgency, its would be business as usual for you. From there you could try voiding naturally and see how it progresses.

      I don't know were you live or what Uros practice there - but if your only does Holep for BPH, you want to find another one anyway. That doesn't generally make sense as a first line option for BPH and ideally, you want to find a doc who does most or all of them and can advise you based on your specific condition.

      That said, you can do CIC for the rest of your life and be comfortable and safe - all of this is elective based on your needs and priorities.

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    • Posted

      Regarding prednisone - I once noticed when I took prednisone for an asthma attack years ago that it restored my peeing function to normal for a few days. When I went into full retention almost 4 years ago now I took the prednisone as an emergency stop gap until I could research options. But it is a very dangerous drug as it suppresses the immune system and should only be used under direction.

      In my case I have a 300 gm prostate but I am fortunate in that I do not have any physical obstruction at the bladder neck, like a median lobe, strictures, bladder stones etc. My BPH is caused by 2 massive side lobes that pinch the urethra. Since BPH is an inflammatory disease it made sense that prednisone would work.

      In your case it is important to confirm that you do not have any physical obstructions. This is done with a flexible cystoscopy. If there are obstructions there are many less invasive procedures available to you before trying Holep.

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    • Posted

      Right now CIC is a minor inconvenience as I have to plan my activities around how and where to CIC, but I have found the SpeediCath compacts to be very helpful in this regard as they fit in my pocket and I don't have to worry about carrying around the 20" straight catheters.

      That said, I will explore options that may allow me to eliminate the need for CIC as it is a daunting prospect to think about doing this the rest of my life. I am 70 now and in fairly good shape, ride my bike 25-30 miles every day and have adapted well to CIC.

      But do I want to do this for the long haul? Not really. Not sure how many of these procedures my uro can do but that will be on my list of questions next visit. I had asked him specifically about HoLEP after I had read about it and he said he can do that, but I didn't take that to mean that is the only procedure he does. Hopefully he can also set me up with Rezum should I decide to give that a go.

      Patrick

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    • Posted

      One advantage to Rezum is that you can do any of the other procedures afterword if for some reason it doesn't work. You may not have enough bladder function to get by without a catheter after a BPH procedure, but you might. You might want to consider getting an informed opinion to see where you stand. As I said before, you can get by with far less than 100% bladder function and with no obstruction and no straining, you won't cause further bladder damage even if your bladder is weaker than normal - and it will rehab either way, to the extent that it ever was going to.

      You might not be a candidate now, but you might be. Worth checking out IMO if you'd like to ditch the catheter.

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    • Posted

      Thanks for your feedback. I will discuss this with my uro at my next appointment and research Rezum further between now and then. Would appreciate feedback from any who have had this procedure, pro and con.

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  • Posted

    Pete: Sorry to hear that you are experiencing this nasty side effect.

    A question for Pete and others:

    Did this issue occur when the relatively large catheter for flushing was inserted after the procedure? If catheter insertion can cause this, would it make sense for a man to inform his uro that he doesn't want the post operation catheter inserted until after he is awake. This would allow a patient to make comments during the insertion such as extreme pain or in my case I would repeat multiple times "nice and easy". The point is that if a man is unconscious during the insertion the nurse or doctor inserting the catheter is not getting any feedback.

    Or am I not understanding what caused the problem.

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    • Posted

      Hello.

      Interesting comments . As far as I can determine from my urologist the exact mechanism that triggers iatrogenic stricture formation after HoLep or Turp etc is unknown. Common sense would dictate the more delicate the approach the less likelihood of damage and the less likehood of stricture as you suggest.

      I am extremely reluctant to be catheterised again but am running out of options unfortunately.

      Thank you for your thoughtful comments.

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