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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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