Nocturia getting worse - does this sound familiar? Any ideas appreciated!

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I am 72 years old, and other than the prostate issues, am in excellent health. Work out 3x per week, not overweight, no sugar or junk food.

Had successful treatment for prostate cancer (radiation) in 2014, and a PAE for BPH issues in 2017. The PAE was only partially successful due to median lobe issues.

Now, I am up to two Tamsulosin per day, and my trips to the bathroom are increasing. At night I am up every hour to hour and a half and it takes me 10-20 min each time to clear enough urine from my bladder so that I can get back to sleep. My latest measured PVR was 200ml.

Here's what happens at night: my bladder wakes me up with the message - you have to pee. I go to the bathroom and pee out about 50-75ml. Then, I try to go back to bed, but I still have that sensation in my bladder that I have to pee - so can't get back to sleep. Then, it's back to the bathroom again. I am now up to 3-5 of these repeat peeing attempts before I can actually get to sleep. This condition is getting worse.

I have been able to get some relief by taking Trospium (for overactive bladder), a small amount of melatonin, and Tylenol before going to bed. The Tylenol seems to dull down the bladder irritation.

I have had many urine culture tests and I do NOT have an infection.

The lack of sleep is wearing on me. I have to do something, and I know this decision is coming up soon. My only three options (based on my insurance, location and finances) is a second PAE, a bipolar TURP and Greenlight. Urolift won't work for me because of the median lobe.

I hate to take my little fistful of pills before bed (the second Tamsulosin, Trospium, Tylenol and melatonin), and recently added a few drops of Passion Flower liquid. Anything to help me sleep.

Does any of this sound familiar? Any ideas that might help me would be appreciated.

Tom

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  • Posted

    Hi Tom,

    Hang in their , ..my only comment was taking acetaminophen (Tylenol) for any kind of prostate problems..I found that it can cause problems...like reducing flow..Just a thought..

    Best Wishes

    Bay

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  • Posted

    Your situation is somewhat like what I faced, but a bit more extreme. I went the Greenlight route, and apparently had a urologist who wasn't competent at doing it. In a nut shell: I ended up with a damaged sphincter, strictures at the sphincter, permanent high level incontinence for two years; then several procedures finally got my urethra patent enough to allow an AUS implant, solving the incontinence issue. However, I also ended up with ED that didn't respond to medication, so I live with that.

    From what my current urologist, who did my AUS implant, and who is younger(40s) and a professor at a large research and teaching hospital has said, I would choose the bipolar TURP over the Greenlight. (My current uro was trained to do the Greenlight, taught other MDs to do Greenlight, but he no longer will teach it or do it because of concerns about it.) The final procedure he did to clear my strictures was with a Olympus bipolar button device. Now, about 17 months later, when I empty my bladder (by operating the AUS), my average flow rate is about 30 ml per second. (I checked it a couple of weeks ago, and emptied 300 ml in 10 seconds.

    If you wish, I can tell you more about the Greenlight, and what my experience was.

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    • Posted

      Glenn,

      If you average flow rate is now 30ml/sec that is fantastic! Great to hear that. Mine, on the two tamsulosin per day, is only 5ml/sec and often less at night.

      Tom

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    • Posted

      That's the one good outcome of the ordeal. I hope I can get at least 5 years out of the AUS before something wears out.! FYI, I've attached an image of the strictures resulting from the initial Greenlight procedure. Thank goodness my new urologist finally did a uretrotomy that resolved that issue, at least up to now. I'm guess having that area under constant pressure, with the cuff of the AUS downstream, helps keep the stricture from growing back.

      Glenn

      image

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  • Posted

    if you can learn to self catheterize you can avoid the pills, at least at bedtime and get decent sleep. It is a proven strategy that can delay a procedure and also a provide a clearer mind to ponder your next move.

    Your health care provider can show you how to do it properly. You might be a tad squeamish at first but the relief will be convincing enough to overcome it.

    Self cathing will buy as much time as much time as you need. with less drugs and better critical thinking required sleep.

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    • Posted

      Airman,

      After my radiation in 2014 I did learn to self cath, but I am concerned that if I do this again my urethra will become irritated and my urine flow rate will go down - for example, if I cath before bed and can get several hours of sleep, then try to pee, it might take me a very long time if my urethra is swollen or irritated. I have only done CIC a few times, in an emergency situation, and it wasn't easy or comfortable. Still, might have to try this again to get me through now and when I decide what I am going to do.

      Thanks, Tom

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  • Posted

    Just want to concur with what Airman suggested. I pretty much followed your exact scenario up to almost 3 years ago now. Then when faced with having my large prostate removed or learning CIC I opted for the latter. It was the BEST decision I ever made. It is now easier to CIC than to floss my teeth before bed.

    Usually I CIC before bed and then sleep for 8 hours though sometimes I am awakened with a full bladder and have to CIC and then go back to sleep.

    I am not sure you have nocturia from what you say. I also had the same problem which I called "peeing off the top of my bladder" since I would just squeeze out what i could and then in an hour that amount was back in.

    I learned CIC from the guys here and if I can learn it you can too. If you are in the US Medicare covers all costs up to 360 catheters a month. Good luck. Howard

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    • Posted

      Howard, what Medicare plan do you have that covers all cost for catheters ? I have a Medicare Advantage plan that only pays 80%. In addition, the supplier jacks up the price so bad, I ended up paying 50% of the actual cash price cost.

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    • Posted

      Howard,

      I am rapidly moving in the direction you suggest - the lack of sleep is wearing me out. If I add up the amount of time I am up during the night and trying to pee in the bathroom it can add up to 1 to 1.5 hours, so I am always a bit tired during the day. When you clear your bladder with the CIC I assume the sensation of having to pee goes away. That's what I am trying to get rid of - that little tickling sensation that prevents me from going back to sleep. It's not a big deal during the day, but at night.....

      Tom

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    • Posted

      Yes Tom - you describe exactly what I had and once I CIC I feel sooo good! CIC gives you back control of your own bladder instead of the other way around! Give it a try - it is easy. UPS just delivered my next 3-month supply of catheters to my door this minute. Good luck! We are all here to help you. Howard

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    • Posted

      Howard,

      I may have no choice - have to get over my fear of the CIC. Last night was really bad - up, down, up, down. Then, after 4am, no sleep. I was in the bathroom trying to pee about every 10-15min. The meds I am taking to help me sleep don't seem to be working anymore - small amount of melatonin, and trospium. Seems like the body adjusts to them and they are ineffective.

      So, you are saying that after the CIC the little tickling sensation in the bladder that gets you out of bed and into the bathroom goes away?

      Thanks, tom

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    • Posted

      YES - that is exactly what I am saying. For example last night I did a catheter before bed at 11 pm even though my natural void was good. Then about 3 am I was awakened with a lot of bladder pressure so I went into the bathroom and took out 500cc ( I did not try to natural void since it is difficult when I awake because I am holding it in for a while).

      Anyway, after the catheter I felt perfect and fell back to sleep right away feeling like a million bucks and then I slept through till 7 am ok.

      A couple more things. I believe that CIC has improved my natural voids over the years. When I started my NVs were tiny but now during the day they are around 200 to 250cc. I think this is because my bladder muscle has strengthened thanks to CIC and also because the catheter 4 times a day dilates the urethra.

      Another thing: there are many many possible causes for peeing problems- not just a large prostate. I have suffered from BPH for over 20 years and have taken all the drugs and had PAE which did not work. But 3 years ago I had a bad episode of asthma and was given Prednisone (50mg) for 3 days. It amazed me that my BPG completely cleared up and I could pee like a teenager ( I am 69 now). That lasted for a week and then I reverted back to my old problems.

      To me this showed me that my peeing problems were in fact due to a large prostate caused by inflammation ( that is the Hyperplasia part of BPH). So I knew that it was not caused by bladder muscle atrophy, neurogenic bladder, large median lobes, bladder neck obstruction, urethra strictures etc etc.

      To prove this for yourself you might ask your doctor for a 3-day prescription of Prednisone to see if it clears up your peeing problems. Prednisone is a very very dangerous drug and should not be taken over time. But for this one experiment it might identify your problem source.

      When I finally went into full retention and was learning to do CIC I took a low dose of prednisone over 2 weeks so I could still void while I learned the technique. My uro wanted to take out my prostate or at least put in a Foley but I owuld not allow that.

      Do you access to Jimjames thread where he details how he started CIC and rehabed his bladder? There is a lot of encouraging stuff on that thread. Good lcuk. Howard

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    • Posted

      Howard,

      As always, a very helpful and interesting post. When I tried CIC in 2014 I did it sitting down. Since you are very experienced now, what is the best position for this - sitting or standing? And, how do you keep the pee from squirting out all over the bathroom when the flow starts? When I was sitting I moved a chair in front of the toilet and when the flow started I directed it toward the toilet. It seemed like I needed more than two arms to get everything working correctly. I was thinking that a catheter with a collection bag at the end would have been helpful.

      Tom

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    • Posted

      Hi Tom - I stand and use a 5-gallon bucket like you get at Home Depot. I have a chart of the urethra on my wall. It basically forms a big "S". I try to follow that geometry during the insertion process. So first I hold the penis straight up and then insert the catheter using jimjames "dive bomb method" which means I lean way back and make sure the catheter is coming straight down into the penis opening (which I hold open with my left index finger and thumb). I also place my right index finger over the cup of the of the catheter to help steady the tip as I lower it into the opening.

      Once the tip catches I slowly slowly lower the catheter in with a little pressure until it is one third in. Then I rotate the whole assembly so it is horizontal - again following the shape of the urethra. I continue to push gently the catheter in another third of the way. At this point I take my index finger off the cup and just hold the green cup (funnel) between my index finger and thumb.

      Then for the last third I lower gently the whole assembly so the catheter is pointing straight down into the bucket. Here I am now gently pushing up on the catheter until it gently enters the bladder. this last third is easy as the catheter seems to pull itself in. Once the flow ends I slowly retrace all the steps until the catheter exits. Make sure to keep your index finger over the cup as you withdraw the catheter so you hold any pee in the catheter and then just release it into the bucket.

      The whole thing takes about one minute. Also make sure you clean the tip of the penis before you start using a clean napkin. I can give you some ideas.

      Also I use a coude tip catheter (Speedicath 14fr) from Coloplast as the curve of the tip helps to get past my large prostate. Some initial bleeding is common as the urethra lining is very sensitive -much like your gums bleeding when you first start to floss.

      Good luck. Howard

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    • Posted

      Howard,

      Thank you - very helpful. I have printed this out as I need to start doing this or my sleep is doomed until I can get a procedure scheduled.

      Tom

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