Hi guys. I am a 67 year old guy in decent shape and pretty healthy overall. My cancer was organ-confined. Gleason 7. Negative margins. Had my robotic nerve-sparing prostatectomy end of November. I need some input on others' experience on incontinence. The first week after catheter removal was horrible. The slightest movement caused substantial dribble I "keegled" 100 times a day and within a week things were better. I remained relatively dry at night and was able to maintain a full bladder until morning, able to make it to the bathroom with no/very little dribble. I emptied under control with a full stream. I was able to stay relatively dry for a couple of hours, but then the dribbles started and I was unable to stop them. Often by evening the dribbles turned to a stream. I would fill 3 pads to the max. It remains so to this day 2 months later with keegle exercises till I am sick of them. Even though I remain able to start and stop urine with no issue, I can not stop the afternoon/evening dribbles. They just happen and often I do not even feel them. It is worse when I sit or stand than when I lie down. I do not drink much and no caffeine. If I do anything that entails abdominal muscle involvement, I dribble. I see no improvement at all after 2 months. In fact, there are days when I think it is getting worse.
In addition, I was one who never knew constipation. Since the surgery I have trouble. It seems i constantly have the urge to move my bowels with that "pressure" in my lower rectum, but I have to really squeeze hard and it seems that when I feel like I have to go (which is always) the urine dribble is the worst. Also the stool diameter is at best the size of a normal thumb.. . .not pencil like but not much larger. It feels like my bladder is protruding into my rectum if I may be so blunt and blocking the passage. I have taken to drinking copious amounts of prune juice to keep the passage open and free of stool.
Can anyone relate to what I am experiencing? I know EVERYONE says it takes time but I see absolutely no progress and some things are really quite concerning. I am to the point where I am regretting having chosen surgery.
Thanks
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TryinNot2P
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I'm kind of like you in a way... I regreted the surgery for years! My surgery was in march of 2011 and I had to wear pads for months, especially at night. I do manual labor and alot of lifting and it took all my concentrarion not to piss whenever I lifted something. Now, years later I am doing much better in that area but still at night I leak and sometimes really bad. I used to always sleep nude but not anymore. Every day Cialis helps but my insurance won't cover it. So it's does get better and I know you can take backward steps too. The other night I actually slept through the night...the whole night without having to get up and pee! Usually I'm up 5 times a night so this hasn't been fun. I'm 60 now and just living life as it comes. Good luck!
Wow. I am sorry that this issue has so impacted your life for so long. You are a better man than I in that your attitude seems so positive. Perhaps that is what I need as much as anything. . .. a positive attitude. It's hard when you have pad full of piss in your pants.
One mistake I was making initially was doing too many kegels and fatiguing the muscle. My doctor told me to only do 40 reps twice a day and be patient. It's not easy but by 6 months I was dry enough to spend 2 weeks in Europe without pads.
My urologist prescribed physical therapy to help me get past the constant drip that I was having. I was skeptical but it worked for me. First thing that was corrected was, same as Guido63 mentioned, I was overworking the pelvic muscles with too many kegels. I also learned other pelvic floor strengthening exercises that I did each day. It's something to consider.
Thanks. During the 3 minutes I saw my doctor at the post op I mentioned my issue and he wrote a Rx for PT. I need to find one in the Nothern Virginia area. I am willing to try anything at this point.
Sorry to hear this. My experiences were not fun, either--tried Kegels, physical therapy, ended up having male sling surgery (which helped alot). But, a couple things---you already know, but I'll say it again--two months is not a long time! you will continue to get better (=even I was much better at six months than at too, and it sounds like my lack of urinary control was worse than yours). I'll say it again--there is an overwhelming chance that will be more significant improvement! Second things--the constipation does make the urinary lack of control worse, and this was also a problem for me. Even though I got off of pain months pretty fast (I hate them for other reasons) the constipation persisted for a long time, and was made worse by a drug I started taking to help the urinary stuff. Vicious cycle. But the constipation did slowly get better. It happens sometimes after surgery--I had a similar problem after kidney surgery. And the constipation will most likely get better for you, too. I wish you luck, and I hope to hear another report in a couple months that things are better!
Thanks so much for your reply. It helps to know that my symptoms, (esp the constipation making things worse) are not unusual. I have never in 67 years been constipated. Did not know what it was like. On the recommendation of an ex-wife (we remain very close friends) I started prune juice and it helps considerably. Though it gives me borderline diarrhea, I do not feel the pressure in my rectum and it seems to help the urinary problem a bit. I will do my best to keep the faith.
How was the experience of having the sling surgery? I have viewed one on YouTube and thought it looked straight forward enough, I can not imagine what gong through another surgery is like for a guy who has had prostate surgery, esp considering that incision being where it is?
my experience was good--90% improvement (maybe more)--a very easy surgery compared with RP, home the same day, catheter for a while--some more lessening of sexual ability but temporary (a few months)--very glad I did it
Not sure if this helps but I found doing too many keegles used to make me pee more almost as if the exercises were tiring me and therefore making me relax too much. I am relatively dry now some 15 years after my RP. Do find even now that getting tired towards the end of the day I can leak unexpectedly. The only thing that makes me really loose control is alcohol and sometimes if I see something that sexually excites me I dribble a bit almost in anticipation. As for the constipation I had real problems after my radiation treatment as I had radiation proctitis and still have problems in the area now, I eat plenty of fibrous foods, fruit and vegetables and sometimes use "fybogel" drinks if I feel I'm getting constipated. Hope things improve for you.
I have indeed been having my usual glass of wine with dinner but I usually go to bed shortly thereafter and remain dry all night. The insane continual dribbling starts in the afternoon usually after I have been up and active for a while. By evening i NEED the wine to deal with it. I will stop it and see if it helps. Thanks for your response. I have a buddy who had radiation for his treatment and he has very severe rectal issues from the treatment. One of the reasons I chose to go with surgery. I guess this is God's joke on all men. . .putting the pleasure gland deep in the middle of the sewer plumbing ! Sigh!
I had the robotic surgery in June of 2013. I did the kegels, went to physical therapy, have taken calais, taking medicine for bladder control, and am now doing the "pins" (in doctor's office every three weeks. I am 67 years old and still have to wear one pad a day. If I drink coffee or alcohol I have to pee frequently. I like to hike outdoor but can only do so if near a restroom or place to pee. Honestly, get depressed when I feel my life is limited due to the surgery but have to realize that if I not had the surgery the cancer may have spread. In summary, I have to realize that I did what I did in control to get rid of the cancer. If I had not had the surgery I would continually worry if/when the cancer would spread. Bottom line, I am alive.
I am so sorry that this has been as difficult for you as it has. 4 years is a long time. I am glad that it seems you are cured of the cancer though so I guess you are right. Eliminating the cancer is the most important. It is all too new to me at the moment. I am trying to wight quantity against quality. Thanks for your response.
I've read that too many Kegel exercises are as bad as too few, because the muscle becomes fatigued. It took me 4 months to regain control, but only after getting serious with the exercises. As for constipation, I continued drinking prune juice till I was regular again. In time, it all worked out. One thing to note... if you drink alcohol it will be more difficult to remain in control. The same for some medications... I guess alcohol and some meds tend to relax your muscles, hence the loss of control. Good luck with your progress!
Thanks. I have been having the standard glass of red wine with dinner. I will stop and see if it helps. I already have cut back considerably with the kegels. This is quite a journey
I had RP in Aug 16. Then was getting better and had UTI in Nov 16 which caused to have to start from square 1. I was discouraged I would never do it. I was wearing the underwear with pads and a pad. This week I finally wearing regular underwear with a pad. It does take lots of time so it is true when they say that.
Thanks for your response. This past week I saw an incontinence physical therapist. She did a sonogram of my Kegel contractions and put me on a diet. . .no coffee (not even decaf), no bubbly drinks, no citrus (fruits or drinks), cut back on sugar.. . .you know the routine. .anything you enjoy stop eating or drinking it. Eliminating my favorite glass of evening red wine was the hardest, but it seems to be helping. I was doing the Kegels too strongly. You barely have to feel the pelvic floor movement.. ..no abdominal contractions at all. It hardly seems that you are doing anything at all but I could view the bladder lifting nonetheless. Yesterday was almost a good day. But today I broke down and had a glass of low acid orange juice and I am leaking more. So I guess I remain on water-only basis until this is more under my control. I wish you luck on your journey.
I empathize with the urine leakage issue. Frankly, I feel my original surgeon over sold the "minimal" side effects from the prostatectomy. The surgeon's office did offer pelvic rehab, kegels, diet restrictions and abiofeedback sort of rectal probe. But that aside, I have finally thrown in the towel and have had an artificial urinary sphincter device implanted. I felt better equipped this time around in evaluating surgeon's sales pitches and searched till I found one I thought most capable. You may wish to consider this device and have a consultation with your urologist.
Thanks I am looking into surgical alternatives as a possible remedy if after a few more months I still am leaking. Did the artificial sphincter help? I have read varying reviews. Thanks for your response and best of luck.
My research had convinced me that the sling surgery was a waste of time. You will make your own determination. The AUS surgery was too recent to conclude on its efficacy yet.
I hear your pain. 12 years post radical prostatectomy. Lots of other health issues, bad back, operations, now osteo arthritis. BUT regarding the incontinence, last year I had an artificial sphincter put in at Johns Hopkins Hospital. Works very well, except when I cough or squeezing out a crap. It is amazing how the two eliminators of our bodies waste are intertwined. Suggestion, purchase one of those red enema bags/with tube. Lube your hole, insert body temperature water up there and the water will push out all of the little stuff that is giving you trouble. Keep up the keegles. They worked for me for many years. But as it turned out, so did the scar tissue that was at the reattachment to the bladder. Then a series of kidney stones were seen in my bladder. They didn't bother me for a whole year, but I was afraid to go far from home for fear that one of them would act up, and I'd be on a ship out at sea. So I told the urologist to take them out. In doing so, he damaged and removed some of the scar tissue and I became 100% incontinent! That's why I went for the AUS artificial urinary sphincter. The surgeon wanted to know if I wanted him to insert the erection device at time of the AUS implant. I opted not to since I have no problem using the TRI-Mix to give me a good hard on.
I read one of your replies and he said he had the sling implanted. So did I. (Later the AUS) And it was the worst thing ever! Did not help my incontinence one drop. But what was and still is the worst, when the surgeon at the Cleveland Clinic installed it, she stitched in a nerve, and I have pain in the scrotum ever since. When I woke up from surgery, I complained about the pain in the scrotum. And nothing could be done. The sling is made from the same mesh that they used on Vaginas, and I am sure you have seen on TV all the ads asking women to join the suit against the manufacturer. I asked if I could join the suit, but I wasn't a female, even though I suffered from the same problems as the females did.
WOW !! ! What a journey you have traveled. . .. and having been treated at some of the country's best facilities. So you had the sling removed and the AUS installed? How was the recovery from the incision in that very sensitive and susceptible perineum. . . .twice? I also have read that the initial recovery from having the bulb placed in the scrotum for the AUS is pretty awful. Was that the case with you? You are happy with the AUS? Thanks for responding.
Once the mesh (in my case, the sling) is in place, it can't be removed. It is so entwined into the tissue where it was sewn. The taint is not where the sling incision is made. However for my first back surgery (L1,2,3) I had stitches inserted there and got the AUS as well. No pain there. But from the sling surgery, touching an area of the scrotum even 5 years later, it feels like sunburn. For the 3 seconds it takes to pinch the start button of the AUS, I just put up with it. I couldn't go commando or boxers as the free swinging sack would touch some place and I'd yelp. So keeping them tightly secure in tightiewhities with a light pad for the day, and another set for sleeping works for me. I am so grateful to the nurse that taught me how to do the keegles properly. I try to do them when falling asleep, almost like counting sheep, but more usefull
And if I'm not mistaken the sling material may be attached to the pubic bone. In a drawing it looks like that. I was never told that, so I may be mistaken.
I had bladder problems after my prostate biopsy, with bed wetting for 1 month and then I had a catheter which then made an infection. I tried twice to have my prostate removed but the bladder infections always got in the way. And now the prostate has become adhered to the bowel, so I am looking into radiation to shrink it. I know about the dribble. I am up 3-4 times each night feels like I'm empty but 2 hrs later I feel the urge. My partner was doing the Kegles too with not much satisfaction. We went to a support group and they all agreed that over time the situation can get better and sometimes you just have to put up with the distractions. Good Luck
PS you know U can always just vent here at the website and sometimes that helps the frustration.
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