I have nocturia but no bed wetting need relief !

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Hello All,

I am a male 69 years of age in general good health. Active and non obese. I was given Flomax to control my nocturia ( peeing 30 40 times per night ! ) but it just isn't working. There are tons of meds out there to relieve the symptoms but I have no idea what to try next. I have an enlarged prostate but not excessively so but an enlarged prostate is no big surprise for a male age 69. My friend who is a PA has recommended getting an MRI or CT scan etc to see where or what the problem might be. I have scheduled another appt with my doctor next week to see what he has to say and what the next step might be. I did see a urologist couple of years ago and got one of those really painful tests they give but the tests turned up negative. So what the heck is causing this ?? Anyway this condition is destroying my sleep and quality of life. Anyone out there who might be able to offer some solutions greatly appreciated.

Thank You

Anthony Sheppard
Altamonte Springs FL

 

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As forum people we are not doctors, and they are the people who will give you expert help, all we can do is make suggestions or give you questions to ask. Was the really painful test a prostate biopsy? Maybe it is time for a PSA test and an MRI scan to see if there is any sign of prostate cancer in addition to the enlarged prostate. Why were you prescribed Flomax which is to help you pee more easily as it is hard to see how that helps nocturia? With your nocturia is the urine very very pale or is it normal strength? What happens if you stop drinking fluids early in the evening?

Are you peeing a lot of times because your bladder is not emptying properly because of the enlarged prostate? If you time how many seconds it takes you to pee 0.1L ie 100ml when you are doing a pee greater than 150ml you can get an idea how well your body is working. 10 seconds is good, 15 seconds is tolerable, 30 seconds would indicate something badly wrong.

I hope the urologist can help you. My personal preference where there is a choice is to have surgery rather than medication which has in the past for me not resolved things and made me feel more ill. I think that you may need to know the cause before you can find a solution.

 

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Thank you so much for the prompt reply ! Yea about ten seconds or less is about right for the time to pee. Pee is a pale yellow in color. Yes I think Flomax is the go to which doctors prescribe when they don't know that much about the issue. I stopped taking it because it seems to make the problem worse. I did get an ultrasound for my prostate over a week ago but it doesn't seem to have raised any alarm bells so far. Yes I believe I got that prostate biopsy which is when they insert a tube down your penis to look for any problems down there. Turned up negative. One thing I read here on the forum is elevating your legs at night when you go to bed by putting pillows under your knees to help reverse the flow of urine. Have you tried that or do you know if it helps ?

Thanks again !!

 

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@shep9000

I'm a 76 year old male with the same issues. Here is what has helped me:

First, I had to find a very good urology group with doctors and surgeons that had the skills to diagnose and treat me.

I had 3 cystoscopies with dilations.

I had the urodynamics test.

I had the Medtronics Neurostimulator implanted. (Also known as Interstim.)

I had the REZUM procedure to reduce the size of my prostate.

I take Tamsulosin/Flomax. (NOTE: Always remember to tell your cataract eye surgeon that you have taken Flomax! It causes complications even if only taken for a short while.)

 

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shep9000, I am 72-year-old male with a long history of UTIs. My urologist felt my prostate was too large also known as BPH (Benign prostatic hyperplasia) and was part of my frequent UTI issue. He did a surgery called "green laser light." With that, he, in effect, vaporized 65% of my prostate. The surgery took 90 minutes.

After that, he sent me to a urologist who dealt with OAB (Over Active Bladder). Because I had tried nearly every med (Sanctura, Tolterodine (aka Detrol), Flomax (aka Tamsulosin) among others, she felt a neurostimulator (Medtronic Interstim device) might work. It did for a while and then stopped working. There were also complications with how she installed the two devices she installed. Last week I had a third one installed by a different urologist. Thank goodness for Medicare!!!

It sounds like the painful test you had was a urodynamics test. I agree it is indeed painful. What it is supposed to do is help your urologist look at how well parts of the lower urinary tract—the bladder, sphincters, and urethra—work to store and release urine.

I share the above in case it helps you. As for advice, if your current urologist isn't meeting your needs, find another one. There is one out there that can help you. I'm now working with the fourth one since 2017.

Wishing you the best.

fleemoore

 

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Thank you sir all great advice !

 

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@fleemoore

He did a surgery called "green laser light." With that, he, in effect, vaporized 65% of my prostate. The surgery took 90 minutes.

By comparison, the "REZUM" procedure took only 5 minutes. I don't know if it was an option when you had your green light laser. Also, not every surgeon is trained to do all the different procedures that are available. With REZUM, a small needle blasts the inside of the prostate with steam killing the cells. The body slowly absorbs the damage over the next year. Recovery was virtually painless, and my stream improved as the body absorbed the damage.

There were also complications with how she installed the two devices she installed.

I also had 3 implants. You didn't mention what your complications were. I drained the battery on the first one. The second one worked fine. The third one was to upgrade to the newest MRI-friendly device. (A couple of years ago I also had a Medtronic pacemaker implanted for my heart. It looks exactly like the Interstim device. )

I always request that the bladder implant be implanted above my belt line since I don't have any fat in the butt area. I am very sensitive to pain, so I always request general anesthesia. It would have been easier for my surgeon to accurately locate the leads using a local pain block, but afterward he said he was glad that I requested the general.

 

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30 to 40 times a night???? YIKES!! When do you get ANY sleep? I thought I was cursed with my bedwetting and the need to wear diapers, but I can't imagine actually waking up 30 times a night to pee..... When I do (rarely) wake up with the urge to pee, by the time I get to the bathroom, take off my diaper, pee, then get back to bed, and get back to sleep, I've shot almost a half hour. I can't imagine doing that more than a dozen times a night! Actually, I now think a diaper is probably the better solution to getting a decent night's sleep....

 

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@MezaJarJarBinks.


I was familiar the REZUM process was available, but no urologist offered it as an option. Probably because they didn't have the training?

I've actually had four Interstims implanted:
Interstim #1 was by urologist #1 in 2017. It worked for about 18 months and then stopped. Even though it had been installed to stop the UTIs, they still persisted. At that time I decided to change urologists...

Interstim #2 was actually implanted by urologist #3 who specialized in OAB. Urologist #2 did the green laser light surgery and sent me to his colleague urologist #3. The first Interstim she implanted had the wire become disconnected from the battery (because she did not know there were different length leads (go figure) and poked its way through my skin. I do have ample butt fat so it was placed on my left cheek as the first one in 2017 had to be explanted by her and she chose to go to the other side.


Interstim #3 was implanted by the same doctor who installed #2. It worked for about ten days and stopped working. I met with her and she felt installing another one would not be worthwhile. She wanted me to do Botox. I was against that. I chose the see a fourth urologist.

Interstim #4 was installed by the new (4th) urologist last week. When he did so, he placed the battery just below my beltline. (I have fat there too) I am still in the process of fine-tuning that device's setting and have great support from the Medtronic rep. I have a follow-up with the doctor next week. He also implants the Axonic neurostimulator but felt that the Interstim would be best for me because it offers more options as far as its settings.

We have both been through a lot. I sure hope the fourth time is a success. I'm feeling confident it will be fine.

Thanks for sharing your situation.

Best,

fleemoore

 

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4 to 5 times a night is bad enough but i could not stand 40 times a night. I have a bad back and BPH and I wear diapers just because it's to painful to get up.
i had surgery for Fournier's gangrene because of a diabetes medication i was on and have nerve damage from it and have urge incontinence from it.

 

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Like everyone, I can't imagine getting up 30-40 times. I'd never get any quality sleep. As it is I keep a container where I can reach it when I am awakened to pee, and I pee in it. Because of that, I don't have to wake myself up as much as it would take to walk to the bathroom (and potentially take a fall in my sleeping stupor). Usually, I get to fall back asleep AND I don't have to remove my CPAP mask either.

 

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@fleemoore

...I keep a container where I can reach it when I am awakened to pee, and I pee in it.

That's a clever idea! I might give it a try some day.

Interstim #4 was installed by the new (4th) urologist last week.

I hope you find the right program and setting quickly and that it works great for you!

For me, the original user interface was not ideal. The new device UI is better in that there are no wires to hook up, but now I must carry around what amounts to two cellphone sized devices. I also don't appreciate the finicky synchronization process. Before, I just turned on one device. Now, I have to boot a cellphone, start the app, sync it with the transmitter, and sync that with the implant - much slower.

I was warned to keep an eye on the battery charge level for both devices, but especially the device that I must hold over the implant. If that ever gets too low, they warned, it is time consuming to get it charged. But, at least I no longer have to feed it AAA batteries as I did with the older version. I do like that I can see the charge level for all 3 units at the same time.

 

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I have researched and found a device for men which allows you to lie in bed and pee into a reservoir thru a tube attached to something which tightly wraps around the penis. Doesn't leak and has great reviews from the guys who use it. I am going to try it. Anybody else out there try this method ?

 

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@shep9000 I was getting up to pee about 4 or 5 times a night and had an enlarged prostate. PSA was elevated but normal for my age. My doctor contacted the urologist and he asked if I would come in for a biopsy due to my family history. Dad had prostate cancer, aunts had breast cancer. Biopsy was not painful but did show stage 4 prostate cancer. I didn't see anywhere you mentioned PSA level so that is why I am telling you this. Now that I don't have a prostate I only get up 3 or 4 times a night. But my first PSA check just came back undetectable so I am good for another few minutes. My heart goes out to you having to go that often. I would definately check into the external catheter. Good luck, hope you figure this out.