What should I do for my prostate obstruction and bladder retention problems?

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I’m trying to decide what, if anything, to do for my urinary retention and prostate problems.  I’ve been self-catheterizing 4 times a day for the last 10 months after an ultrasound at my Urologist’s office identified urinary retention, which seems to be due to prostate obstruction.  The post is a little lengthy, but I’ve had a lot going on lately.

My Urologist wants to remove my prostate for the obstruction and distended bladder problems, but I have a hard time accepting there aren’t better, less radical options.  He said he would possibly consider urolift but didn’t recommend it, and there is also a local urologist who is supposedly one of the leading experts with the procedure I’m considering contacting.  I don’t think anywhere nearby does PAE that I’m aware of (I live in Utah), and the same with FLA.  I’m 54 and my situation is a little unique in that I’ve also been on Active Surveillance (AS) for prostate cancer for the past 8 years after my PSA doubled during a yearly physical.  My Urologist considers everything based on the possibility of having to have the prostate removed one day due to cancer, which is why he doesn’t recommend a TURP.  But one of the reasons I’m doing AS is to avoid a radical prostatectomy for as long as possible, maybe forever, and my last two biopsies have been negative (as part of doing AS I’ve also embraced an anti-cancer diet and lifestyle).  I’ve had six total biopsies now, which I sometimes wonder is part of my prostate and retention problems, and there has never been more than one positive core or Gleason score more than 6.

The retention was discovered during a visit with my Urologist (and PSA test) in late November 2016, when they performed an ultrasound on my bladder and it measured about 800 ml full.  I was shocked to say the least, it had probably been that way for quite a while and was gradually getting worse, but with the small changes over time I unfortunately didn’t realize what was happening and also thought some of my urination difficulties were due to my prostate issues.  I wish they had been doing the ultrasounds in prior years so it may have been discovered earlier and saved so much stretching of the bladder.  I had a urodynamics test a few weeks later and it measured a bladder water pressure of only 34 (not sure what units).  After 8 months of self-catheterizing I had a second urodynamics test and the pressure was back up to 68, but not to the normal range of around 100 yet.

The second urodynamics test also indicated I had some type of blockage which is still making it hard to urinate even with the increased pressure.  As I mentioned my urologist recommended performing a radical prostatectomy instead of a TURP because a TURP makes it too hard to do a prostatectomy if I ever needed one.  He said based on my current bladder pressure there was an 80% to 90% chance I would eventually regain full bladder strength and normal urination after the operation.  I asked him about some of the options like urolift and others and he said they all cause problems for surgery, for instance the impotence rate from a RP after a urolift is 50%.  I also asked him if I could get the pressure back to 100% just doing the catheterizing and he said possibly, but couldn’t say how long it might take.  All they know is the bladder needs to be kept emptied regularly to heal.  I also asked him if the pressure got high enough again it could push through the obstruction, he said possibly.

In addition, when I had my appointment back in November 2016, my PSA had jumped up a few points which led to my latest biopsy in February 2017.  Prior to the biopsy I had a specialized prostate MRI so my Urologist could do an MRI fusion biopsy.  The MRI didn’t show anything significant and my Urologist commented he was “underwhelmed” by the results, but still performed the biopsy.  It came back negative for the second time in a row, but did show acute, chronic non-bacterial prostatitis (for the first time).  My Urologist prescribed finasteride, but I stopped after about 2 ½ months due to the terrible side effects (ED, mental fog, really messed up sleep and insomnia, etc.).  I don’t know if the prostatitis is part of the retention problems, or was caused by the retention, but it sounds like there aren’t a lot of good solutions for curing it and I’m sure it isn’t helping.

After the second urodynamics test in early August, I took Rapaflow for two weeks from samples they provided me and it really helped the flow for the first time in many months, although I also started experiencing retro ejaculation.  When I got a prescription after the samples ran out it is was for Flowmax (tamsulosin) instead of the Rapaflow since there wasn’t a generic version of it yet and it was too expensive for my provider to cover.  The flow from the tamsulosin hasn’t been as strong, but it seems to be helping.  The retro ejaculation from the Rapaflow has gone away though, which sounds different from a lot of the posts on this site.  I’m still getting more out from catheter than naturally, but hope that will change at some point.  I’m also taking stinging nettle root extract and pumpkin seed oil in hopes that it will help with the tamsulosin.  I’ve been doing acupuncture and herbs too, not sure if it’s helping but I like to think it’s providing some benefit.

After doing some online research I requested a cystoscopy after the second urodynamics test to get a better idea of what’s causing my problems and had one about a week ago.  Not sure why the Urologist hadn’t recommended one since they’re a pretty simple and quick procedure, I guess he’s made his recommendation and didn’t see a reason.  It showed the prostate narrowing a little near the bladder, and from inside the bladder it showed the prostate pressing in some on the bladder neck which is likely the main cause of the blockage/retention.  Not sure if is just anatomical, prostate growth with age, due to the prostatitis, prostate cancer or a combination of all of them, the PA did the procedure and I haven’t spoken with my Urologist about the results.  The assistant did say it wasn’t an enlarged median lobe.  It also showed some damage on the inside of the bladder from being over stretched.  The rest of the prostate and urethra looked good.  Pretty interesting watching it all on the video monitor, I just wish things looked better.

Quite the story, and it’s been a very strange and stressful year.  I have another appointment with my Urologist after the first of the year, but still have no idea what to do and will continue looking at the other options.  I’m even considering stem cell IV therapy, but most success stories (mostly for other types of conditions) seem anecdotal.  An operation and its potential life long side effects aren’t my preference, but I don’t want to always have to catheterize either.  Although if I could get to where I was only doing it once a day or less with no meds, I think I could live with that.  I just want to pee and ejaculate like normal.

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  • Posted

    From what I've read about surgery, HOLEP seems to be a better  alternative than TURP because the outcomes are better and it's less radical. I doubt if meds are a long term solution. I have issues and my urologist told me that surgery likely wouldn't help much because my problems are a combination of bladder, bph and sleep.   I hope you find a solution.

    • Posted

      Thanks reg. The meds are tolerable, but I don't know if I can do them long term. For now they seems to be helping and give me time to look at my options.

  • Posted

    Your story sounds similar to mine and many others. Like you, I have dealt with traditional male LUTS since my early 50s, diagnosed with G6 PCa at 57 and on AS for 4.5 years. Side effects from alpha blockers and Finasteride were worse than dealing with the prostatitis. 

    As for the MRI, it has been my experience (and that of others) - that it takes a radiologist trained in and familiar with prostate issues as well as a good 3T mp MRI to give you good results.  I have had 7 MRIs at 3 different locations over the past 5 years and the difference in the images as well as the reports were very different. Not until I found radiologists that specialize in this area was I confident of the results - and having them show me the difference in images side by side in their office, the difference was evident even to a layperson.

    My most recent MRI revealed that the one visible lesion has continued to grow and my PSA has started to creep up after 4 years of being stable. As such, I will have FLA in December and have additional tissue ablated to hopefully help with the LUTS.

    Personally, I think prostatectomy is too aggressive / invasive.  I do appreciate that traveling and perhaps having to pay out of pocket for the MRI/FLA/PAE may not be an option for many. If you do have the ability to at least travel to Texas or TN to see one of the specialists, that would be my suggestion. If you want contact info for these doctors (both of whom I've used/consulted with), send me a personal message and I will forward it to you.

    Good luck.

  • Posted

    Hi,  I just wish your Urologist was mine as after 5 years of urine infections, foreskin infections that weld my skin to my penis, biopsies showing 1:12 Cancer, TURP, Sepsis, catheters of all sorts, I really want my Prostate gone now, but all they want to do is another TURP after 2 years, circumcision and likely another biopsy with Sepsis risk again. The TURP gave me Incontinence which is getting less and E/D which nothing is helping just now.   Think I have nothing to lose by going the whole hog and getting Robotic surgery, so think I will have a struggle getting them to agree on our NHS.

    David

    • Posted

      Thanks David. Sounds just the opposite as me, my Urologist has wanted to remove my prostate since my first diagnosis. Good luck with you getting the procedure covered.
  • Posted

    Hey Buddy.  I think your doctor has his procedures mixed.  Do you know that 9 out of the top 10 prostate procedures cause retro and ED.  Urolift is the only one that does not cause any of them problems.  The only way you can get retro from urolift if your doctor messes up.  Had mine done 2 1/2 year ago.  Doing great and my orgasms are intense.  Better then when I was younger.  there was also a 5 year study on urolift all men are doing great and no retro.  The Urolift is going to do the same as the others make a tunnel. KEN     
    • Posted

      Thanks Kenneth. Has your doctor said how long the Urolift stays affective, and does it need to be repeated at some point?
  • Posted

    I'll keep my response short.  After 8 years of suffering all the discomfort and symptoms you refer to I had a HoLEP procedure carried out. 

    In and out the same day without a catheter.  Instant relief from all the BPH symptoms and the bonus of a Gleason 6 PCa being discovered in the removed prostate tissue (two previous biopsies had failed to find it).

    My bladder took a couple of months to get back to normal but that was expected.

    Retrograde ejaculations but that was expected and not a sign of ED.

    My PSA went down to .3 following the procedure and after a year reached 1.0 where it has remained.

    Did they get all the PCa out?  Who knows but with my PSA in low numbers and no longer rising (it had reached 10 before the procedure), I'm one happy bunny.

    Good luck.

    • Posted

      Thanks rogcal. I don't think anywhere nearby me does this procedure, but I will look into it.

  • Posted

    From what you said I am pazeled that you still think that you might have prostate cancer. After 6 probably unnecessary biopsies and MRI, I would say there is a high probability that you don't have prostate cancer. PSA readings are unreliable and can be influence by some other factors, like autoimmune problems.

    After you resolve in your mind that you don't have cancer, then you should start looking for the best solution for  your problems ( and probably different urologist).  List treatment from the least invasive ( like medication) to the most invasive. I would certainly try some first that are reversible. If Rapaflow  helped you, why not try it again or look for similar medication. Certainly better option then surgery. Just my thoughts.

    • Posted

      Thanks nick67069. Good idea on the list. The physician assistant said he can try with the insurance on the rapaflow again if it's working better, I may ask him to try. I also need to ask him about the other available meds. I've read Cialis can have good results, but I'm concerned with the very rare cases of hearing loss as I have single-sided deafness.

  • Posted

    I'm in agreement with what the others have offered.  And if the Urolift doc is Ganges, my vote is solidly for him!  I had a Urolift in 2015, which ultimately didn't last (3 or 4 good months), but he had offered the procedure tentatively, and I knew the results were a maybe.  But his professionalism and willingness to discuss any and all matters related, lead me to still recommend him.  I traveled all the way from Pennsylvania to have him do the procedure, and would do it again.  

    BTW, I started my saga in 2014 with retention of TWO AND A HALF LITERS!  I had zero sensations for telling me I needed to pee, even when I was holding 1,000ml.  I took the CIC route, 5 times a day, and now get internal notification of need-to-pee at 250 to 300ml.  

    • Posted

      Yes ir's Ganges, and pretty close to where I live. I think I need to get an appointment with him.

      Still taking me a while to get internal notification, but things seem to be slowly getting better.

  • Posted

    It is simpler than you think. Don't worry about PC since you had so many negative biopsies. You don't want to cath. You can't stand meds. The only option left is procedure. Holep is out since you don't want RE. There are only few  procedures left: Urolift, PAE, FLA, and iTind.

       I personally don't like Urolift and PAE because their inconsistent records and I don't like foreign things inserted into my body, let them be beads or pins or tacks. 

       iTind, the least invasive, is not available in the US, currently available in UK. FLA, currently the best in my opinion, is not covered by insurance, or only partly covered, and very new, so lacking long-term records.

       In my case, I can handle meds so I am currently on Finasteride and Doxazosin. I am hoping to drop Doxazosin after my prostate shrinks enough. Because of retention of about 200mL, I also cath once before bedtime. The rest of the day my retention is not that high so I don't bother to cath. Hope this helps. Hank

    • Posted

      Thanks hank1953. I've never heard of iTind but will look into it. I've started to look into FLA also, but it sounds like it would be out of pocket.

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