Night/Early-morning "anxiety" caused by need to urinate

Posted by rlpostrp @rlpostrp, Sep 24 1:02pm

I am a post-RP patient (April 2025). I've never had difficulty sleeping, and no issues sleeping through the night. However, in these post-op days, I noted that each morning when I am slowly aware that I am awakening, I note a tension...an anxiety...that is quite disturbing. It may start like a bad dream but move into a wakeful state. Then...I realize that I "could" or "need to" urinate after my night's sleep. I often can sleep through to 6:00 a.m. to 7:00 a.m., but I often awaken between 4:00 a.m. and 5:00 a.m. with greater urgency. The anxiety is like I had too much caffeine (but I am now caffeine-free since it is a bladder irritant). Here's the thing...
After I urinate and crawl back into bed, within minutes I realize that my tension and anxiety are gone. The need to urinate so early happens every night, and...every night or early morning, I have that anxiety. But then it goes away after I urinate. Prior to my surgery I never had such an issue. I'd just get up in the morning - whenever that was - and just stand at the toilet and urinate like I did for 65 years before.
So, I wonder if any of you post-op guys have a similar feeling of tension or anxiety when awakening, with or without any particularly great urgency to urinate? Now that I know what it is, I just get up to urinate, because I want to end that anxiety and enjoy another hour or sleep. I appreciate your comments and experiences in advance.

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Profile picture for rlpostrp @rlpostrp

@duberdicus Thanks for the message. It only took a few times of slowly, strangely awakening and being aware that I was full of anxiety...like I was wired with too much caffeine (I am caffeine-free now)...that I noticed: "well, you're awake now, and I guess I could get up to urinate" even though "at most", I only had mild urgency. It was more just an awareness like all other mornings prior to my surgery that" "Oh...I am awake...I guess I could go urinate now." Then within a handful of times doing that, I realized that after crawling back in bed post-urination, my anxiety was gone. I have experimented a little too, like nothing to drink after 6:00 p.m....no liquids of any kind. Those nights I sleep through the night and I awaken normally without any anxiety or sense that I had a bad dream. Then I switch back to having something to drink as late at 9:00 or 10:00...just a few sips of water. I always urinate before going to bed, so my bladder is as empty as it can be for my night's sleep. But...those nights, I awaken between 4:00 - 5:00 a.m. with that bit of wired anxiety, and again, just get up to urinate because I decide to - not because I necessarily needed to (but do on occasion). Then once I go back to bed, it quickly realize that I am no longer feeling wired/anxious/tense. I have a sense of relief. I never had this occur before my RP surgery. It has only been since my surgery. Guess I have to live with it until it hopefully subsides.

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@rlpostrp
There is something that associates PC treatments with urination. I get strong urges that I would expect gallons of urine but would dribble a few once. While taking Orgovyx I urinate a lot every two or three hours, day and night. Off Orgovyx and back to the urges and dribbles.

I wonder how the stress you are feeling is caused by a sip of water after 9PM. A somewhat full bladder may affect your dreams. No liquids after 6!

Good luck.

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Profile picture for duberdicus @duberdicus

@rlpostrp
There is something that associates PC treatments with urination. I get strong urges that I would expect gallons of urine but would dribble a few once. While taking Orgovyx I urinate a lot every two or three hours, day and night. Off Orgovyx and back to the urges and dribbles.

I wonder how the stress you are feeling is caused by a sip of water after 9PM. A somewhat full bladder may affect your dreams. No liquids after 6!

Good luck.

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@duberdicus
I take Myrbetriq To relieve the urgency, It works great at night and reduces incontinence.

Gemtesa works Similarly.

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I was given gemtesa and solifenacin. They both worked about the same but gemtesa was more expensive so I stuck with Solifenacin.

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Profile picture for jeff Marchi @jeffmarc

@sicernon3
15 years after surgery and 12 years after radiation, I get up at most once a night to pee. I take Myrbetriq Which reduces the urge to go and also helps with incontinence. Gemtesa Is another drug that does the same thing. If you’re getting up too many times at night, this may help you, It sure worked for me.

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@jeffmarc
Do you have any side effects I read that some develop urinary infections because of the retention. And do you you still have wear incontinent pads. I’m going through this 5 pads a day. Thank you

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Profile picture for jrs619 @jrs619

@jeffmarc
Do you have any side effects I read that some develop urinary infections because of the retention. And do you you still have wear incontinent pads. I’m going through this 5 pads a day. Thank you

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@jrs619 Thanks for your message. About 2-3 months ago, I shared a revelation that solved, at that time, 75% of my incontinence and the number of pads I was going through: My RP surgery was in mid-April, and my catheter was removed 11-days later at the end of April. About a week after that I felt the energy to start driving and doing quick errands. I wear traditional, slightly loose-leg boxer shorts, not jockey and not tight-to-thigh athletic/compression undershorts. So, I had to wear a "diaper", since a pad would fall out of my boxers. But...going out in a diaper those early weeks and first two months, I decided to be "smart" (not really), and put a disposable "pad" "inside my diaper" so if/when I leaked, I could quickly find a bathroom, and pull out the soaked pad, and replace it with a clean/fresh pad that I carried folded in my pocket.
What I didn't realize until two months later, is that the extra bulk of that pad needed space to be down there. It made its own space by pushing up on my perineum, thus pushing and applying pressure on my bladder, which forced it to leak a bunch of urine. So, my "not so smart" means of using a pad to help "quick change" it when it was wet, had created the very problem that I was having...I was creating my own problem and frustration. I didn't realize this, because as I recall, I ran out of pads one day and had to wear just the diaper. That was an epiphany moment: after about 2.5 -3 months post-RP surgery, the day I had to wear "just a diaper", I had minimal...almost no leaks. I wore two diapers all day. The amount of total leakage was minimal...like the size of a quarter or half-dollar. The days and weeks before I was absolutely soaking "pads" inside my diaper because that pad was pushing up on my bladder, forcing urine out through my still weakened bladder/urethra sphincter.
Life has been great now. I went to bed with a diaper...from "Day #1" without a catheter, but I never leaked urine while reclined, sleeping through the night. I now only sleep in my loose-fit boxers, and wake up in the morning about 5:00 a.m. to urinate. After that I still wear only my underwear that I slept in, through the early morning hours until I shave and shower - no leaks as I move about the kitchen for breakfast and sit to eat. Then I put on a diaper after showering "just because", and that diaper lasts me from say, 8:00 or 9:00 a.m. until about 2:00 p.m. at earliest, but usually until about 3:00 or 4:00 p.m., most often when I have returned from errands or afternoon activities and note a little moisture "down there." That "second" diaper lasts me until I go to bed.
Two pieces of advice: 1) If you are not going to Pelvic Floor Physical Therapy (PFPT), get your urologist to write the prescription for 8 sessions (usually plenty). There are MANY more Kegel exercises than the handful likely given to you on your little "post-op" instruction sheet. PFPT really helped me. I did 7 sessions and really didn't need the 8th...or the 6th or 7th. And secondly, part of PFPT is to get on a disciplined schedule of how and what and when you consume liquids. I was told to use the restroom every two hours whether I felt like I needed to urinate or not. And...immediately before or after - or whenever - I was only to drink 8 ounces of "water". No alcohol, no caffeine, and no acidic drinks because they are all bladder irritants, especially post-RP surgery when, as my PFPT Therapist said: "Your bladder is really pissed off (pun intended) after surgery." Your bladder is in recovery from the assault of the surgical removal of your prostate that used to sit right under and support it. Your bladder is now weaker or less-able to hold the weight of urine that used to be supported in part by the prostate under it. BTW...I could not drink only water. My PFPT Therapist allowed me to drink small amounts of my favorite "decaf" sodas, and a few sips of orange juice in the morning. I can really tell when I have consumed more than my 8 ounces of liquid. Those are times when I might leak more and/or have greater urgency at unexpected times. PFPT not only retrains/strengthens your pelvic floor muscles, but it also retrains you about when and how much you drink. I have cut my soda and orange juice consumption by 1/2 to 3/4 of what it used to be. I didn't think I'd survive that, but I did.
So, bottom line: I have now regained 95-99% continence. "If" you are using a "pad" inside a "diaper" because you think it was "smart" like I did, once I started going out on errands and living life: I suggest stopping. Trust the diaper to do the job of containing urine, and carry a spare diaper folded in your pants or coat pocket, or in a small manly sling bag across/over your shoulder. And again, if you are not going to PFPT, "tell" (don't ask) your urologist that you want a prescription for 8 sessions of PFPT. Depending on your health plan you may need pre-authorization. My Medicare Advantage Plan only approved "two" sessions, but my Therapist simply wrote a justification for a total of 8 sessions, and it was quickly/easily approved. Good Luck to you.

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Profile picture for jrs619 @jrs619

@jeffmarc
Do you have any side effects I read that some develop urinary infections because of the retention. And do you you still have wear incontinent pads. I’m going through this 5 pads a day. Thank you

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@jrs619
I never had a urinary infection.

At most I go through two pads a day, And that is not very often. The biggest problem is, I can’t trust what will happen if I go somewhere. I leak slowly and constantly if I am standing up, Even if I just go pee and empty my bladder, I still drip. This started about five years after I had radiation and has gotten progressively worse in the seven years following. I’m actually going to see a doctor about getting an AUS. If I’m too active and lean over to one side or the other, I end up peeing down my leg.

I do use a Werner clamp if I go somewhere, But I can’t keep it on for more than two hours or it can cause problems. If I were to go to a four or five hour event where I have to be standing up, I might have to change my pad and my underwear because the edges get wet. This really limits my ability to go places.

I can’t wear incontinence underwear because if my urine gets beyond The center of my groin it will cause itching and redness. I’ve got some stuff I put on to stop the itching, but I have learned not to do that. I was reading in my baby book that my parents had that problem with me when I was an infant, I guess you never grow out of that problem.

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Profile picture for jeff Marchi @jeffmarc

@jrs619
I never had a urinary infection.

At most I go through two pads a day, And that is not very often. The biggest problem is, I can’t trust what will happen if I go somewhere. I leak slowly and constantly if I am standing up, Even if I just go pee and empty my bladder, I still drip. This started about five years after I had radiation and has gotten progressively worse in the seven years following. I’m actually going to see a doctor about getting an AUS. If I’m too active and lean over to one side or the other, I end up peeing down my leg.

I do use a Werner clamp if I go somewhere, But I can’t keep it on for more than two hours or it can cause problems. If I were to go to a four or five hour event where I have to be standing up, I might have to change my pad and my underwear because the edges get wet. This really limits my ability to go places.

I can’t wear incontinence underwear because if my urine gets beyond The center of my groin it will cause itching and redness. I’ve got some stuff I put on to stop the itching, but I have learned not to do that. I was reading in my baby book that my parents had that problem with me when I was an infant, I guess you never grow out of that problem.

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@jeffmarc
It sounds familiar. I was hoping this was what I needed for my problem but doesn’t seem like it will solve it. I have the same problem going anywhere lengthy. It’s almost reminds me of the Cinderella story.

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Profile picture for jrs619 @jrs619

@jeffmarc
It sounds familiar. I was hoping this was what I needed for my problem but doesn’t seem like it will solve it. I have the same problem going anywhere lengthy. It’s almost reminds me of the Cinderella story.

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@jrs619 Hey again...how many weeks or months are you "post-op"? if less than 3 months, you might do best to adjust your expectations for what you want to accomplish and when. Wearing a diaper and pad, then just diaper drove me CRAZY. I am still not 100% continent after 5 months, but I am 95% "there." I just need to cross the finish line. Truthfully, but the end of the third month, it was just another day going through diapers and pads...I sort of resigned myself to it. Again, the biggest improvement was eliminating the "pad" inside my "diaper." That made a world of difference. Again...be patient (hard I know) and just know "this too shall pass." Good luck.

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Profile picture for rlpostrp @rlpostrp

@jrs619 Hey again...how many weeks or months are you "post-op"? if less than 3 months, you might do best to adjust your expectations for what you want to accomplish and when. Wearing a diaper and pad, then just diaper drove me CRAZY. I am still not 100% continent after 5 months, but I am 95% "there." I just need to cross the finish line. Truthfully, but the end of the third month, it was just another day going through diapers and pads...I sort of resigned myself to it. Again, the biggest improvement was eliminating the "pad" inside my "diaper." That made a world of difference. Again...be patient (hard I know) and just know "this too shall pass." Good luck.

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@rlpostrp
Thanks for your reply and for the info and the encouragement. Hope your progress continues. Thanks again

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Profile picture for tj1967 @tj1967

@jeffmarc

you hit the nail right on the head. "The first few years I had prostate cancer there was a lot of anxiety. Wondering how long I would live, Did I have five years?"

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@tj1967 yes...PC has turned my life upside down...and now the double whammy of fatigue from ADT (Orgovyx/Nubeqa) and radiation..anxiety and relentless hot flashes ( 3-7/day) and now some discomfort from just 1 week of radiation.

the emtional impact of cancer diagnosis is like being hit by a cement truck... dare you even buy green bananas ?

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