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

    First, I'm really know very knowledgeable about PCa. That said, if AS is the appropriate course, then I can't understand the logic of a radical prostatectomy at this point.

    As to your bladder rehabilitation, self cathing seems to be working. You could either continue with that, or look at other surgical options. I would get second and third opinions on the logic of a procedure or surgery interfering with a hypothetical radical prostatectomy down the road, that you may never even need. 

    Are you getting any natural voids or is it all via self cathing? For optimal bladder rehab, you will want to adjust your self cath frequency so that total bladder volumes are below 400ml. That would include the sum of what you cath and the natural void preceding it, assuming you have natural voids. 

    Again, don't know a lot about PCa, but your urologist seems to have a narrow logic which always ends up with radical prostatectomy. I would get more opinions. 

    Jim

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    • Posted

      Thanks jimjames. I'm getting natural voids, but I think more with the catheterizing. The tamsulosin has helped, but as I mentioned the stream was stronger from the Rapaflow. I don't have too many opportunities to measure, but it's usually around 200 - 300 ml when I finally self cath. The last time I measured both natural and cath the total was around 400 - 500 ml. Before I started the meds I was getting around 600 - 700 when I catheterized.

      I really like my Uroligist, but I think I need to be scheduling some second opinions.

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    • Posted

      JIm, I have been doing your dive bomb method for CIC. I like it but now i don't understand whats happening. The fr12 catheter has trouble going in .I don't have this problem with other catheters that i feed a small amount in the  uretha at a time.Any ideas why this is happening?

      thanks jim,

      frank,

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    • Posted

      Frank,

      Can you elaborate a little more on what trouble you're having getting it in? At what point does it happen? What do you feel or what is going on at that point? Have you tried the dive bomb method with FR14?

      Jim

       

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    • Posted

      Jim,  Adding to this conversation, do you know if the Prostate can move about as I have had times when it has taken me 3 or 4 attempts to get the catheter in past the Prostate, and normally know if I am going into retention as flow really slows down night and morning first.  Also noted that when Nurses have had trouble putting a catheter in, the one who gets it in is the one who forces it in.

      David

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    • Posted

      David sorry that your having a problem.  I don't think it can move.  I know the few times that I had a catheter and it did not going.   The nurse told the other nurse that it can curl.  You should never force a catheter in.  The first time they did that to me I had blood coming out.  Be careful.  ken 

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    • Posted

      Thanks Ken, I too have had bad bleeding if they push too hard. It just seems strange how it becomes blocked at times and then clears for no reason, and I did wonder if the catheter could force it back.

      David

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    • Posted

      David  I know when your in the hospital and they try to get it in.  They do tell you to breathe and relax so it goes in better.  They have more problems if your tense.  I hope you can figure it out.  It can be very painful.  Good luck  Ken  
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    • Posted

      David.  Never heard that one.  I think if you coughed it would come out.  I know the first time they tried to get one in he force it and pulled the first one out and forced another.  The pain was.  You know.   Maybe more lube or a smaller one would work better.  Try to relax.  Maybe Jim can help you   Ken
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    • Posted

      David,

      There are several things you can try for difficult catheterizations. First, switch to a hydrophilic if not already using one, as hydrophilics tend to slip in easier. Second, try a Coude (bent) tip, as coude's are designed to go around obstructive prostates. Third, although counter intuitive, you can try going up a FR size which has the effect of making the catheter stiffer with  less tendency to bend back on itself when it gets to the obstruction. All these are preferable to forcing the issue which can cause damage. One should always be as gentle as possible. There are also other techniques such as relaxation, coughing, or very subtle twisting  at the resistance points. Personally, I find the very subtle back and forth twist gets me through. You can also try different brands/models of catheters as well. 

      As to the prostate moving, maybe it may compress after several tries, don't really know. I do know however that voiding is easier after a bowel movement which would reduce pressure on the whole region. 

      Jim

       

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    • Posted

      I think the coughing may help because of the relaxation that follows. Like tightening a muscle and then letting go. 
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    • Posted

      David, I have been cathing for a little over three months.  My first attempts were scary, as I stabbed myself a couple of times and bled profusely.  Since then, I have been cathing 4 times per day without any sign of bleeding.  I do agree with Jim's recommendation regarding hydrophilic catheters for ease of insertion.  Most of these are made of plastic. However, I have found that I can successfully navigate the prostate using a latex catheter.  I do use a fairly large size (FR 18) straight tip latex catheter.

      I also carry some SpeediCath Flex Coude hydophilic catheters and Cure Ultra Male pre lubricated catheters when traveling, so I can be more discrete and not have to worry about lubricating a latex catheter.  Both of these are soft plastic catheters.  Even so, they are stiffer than the latex ones. With the plastic ones, I find a smaller size works better. (FR 16 or 14).  Sometimes, with the plastic catheters I meet some resistance making the turn into the prostate.  A little pressure on the perineum helps negotiate the turn.

      Like you, at times, I encounter more resistance to insertion when navigating the prostate.  I don't know what causes this.  However, in my 3 plus months of cathing, I haven't failed to insert one into the bladder.  It may be a function of the larger size, soft latex and plenty of lubricant.

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    • Posted

      Hi Pluff Mud,

      18F is a bit on the large size but within normal limits. For comparison, I started with FR14 and now use FR12. From what I've learned and observed, I'd say FR14 is the most popular size and that's why I recommend people start there and then work up a size or down a size, depending on how it goes. But like you say, different materials work differently in different sizes. For example, I could never get a red rubber FR12 into the bladder because it's so flexible and would tend to bend back on itself when it hit the sphincters or prostate. The Speedicath FR12, however, is much stiffer so there's no problem in that respect. 

      Are you cathing solely for retention or do you have a stricture issue? 

      Jim

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    • Posted

      >normally know if I am going into retention as flow really slows down night and morning first.<<

      Are you saying that you have trouble doing an NV in the morning?  When I am up and moving around during the day I either get an urge or actually have an NV before cathing.  But after sleeping around 5 hours I feel uncomfortable... try to do  an NV & nothing doing.  Then if I cath right then - I typically wait for awhile until I feel a fit of an urge, then cath - i get around 300 t0 350.  Actually, I think this is probably good.  I've read about a few men who have to wear a catheter at night due to nocturnia or whatever its called.  Thank goodness that seems to not be too big a problem with me.  But I consciously don't drink much water or anything else a few hours before bed.  There must be something about sleep that sort of shuts down the detrusser muscles or something.

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    • Posted

      Retention, but I do have an enlarged prostate.  Since I started cathing, I do not have natural voids.  I do sometimes feel the urge, but when I try, nothing comes out.  I have an appointment coming up later this week with my urologist, and catheter size is one of the topics I plan to bring up for discussion.
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    • Posted

      Jim, When i use the coloplast Fr12 it does not want to go in,it's like spaghetti,it bends and takes a while to do down the uretha.I don't have this problem when i use the catheter where i feed into the uretha small amounts at a time.I like your nose dive method , however it takes a while for the catheter to get into the uretha.I just got 5 boxes of coloplast FR12. I don't like going up to FR14,but i bet thats the reason i'm having trouble? Do you think i'm causing a problem by using different catheters?

      Thanks JIm

      frank,

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    • Posted

      I would try several FR14's  and see how they work. FR 14 isn't that big but just might be stiff enough for you to "nose dive". If you like the 14's, your distributor should be able to exchange the boxes of the 12's for the 14's. I don't see a problem using or experimenting with different catheters. 

      Jim

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    • Posted

      Hi Pluff Mud,  It is the Speedi Cath Flex 12 I use when I have to, as I can go normally for a while and then night and morning it starts slowing down but is OK in the day. When that happens I have to self cath at night and in morning to empty out, then after a few days I find I cannot get the catheter in or urinate, so I end up having to get a permanent one in for a couple of weeks. Sometimes they take it out and I can go or not, but having had the catheter in it seems to force the Prostate out of the way. As said before would like Prostate gone and then there would be no obstruction.

      David

       

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