Incontinence curiosity

[marinoperna]

Had RALP about 7 weeks ago. I know that is not a long time but I'm curious as to what others have experienced. How long did it take for the soreness to go away in testicular, perineum & rectum area? I'm hoping that once the soreness goes away I'll have a better chance with gaining some continence.

I can sit for long periods (pretty good while sleeping as well) without virtually any leakage although I never have a sense of a full bladder as i did prior to surgery the moment i stand up there is this great pressure i cannot control without "pinching" (not a great look especially when away from home) till i can make it to a toilet or i have to deal with a gusher in my diaper.

I can, at any time, stop my stream (the external urethral sphincter) but leak incessantly anytime while standing. Does this mean that my internal urethral sphincter was damaged or just is not working? The muscle used in Kegels (to stop flow) evidently is not the one i need to find and strengthen.

Tring to clear my head with some hope that this will get better as i feel so house bound with the 2-3 diaper changes everyday along with maybe 10-12 pads or paper towels!

Thank you in advance for your comments

Marino

[Justfor_]

I was unlucky in that my anastomosis took some time to heal and had the catheter for almost one month. This resulted in shrinking and loosing the elasticity of my bladder. I had bladder control since catheter removal, but I had to urinate almost every half an hour, nights included. For the first three months this was my daily schedule, i.e. staying close to the bathroom. At the completion of 6 months this was no more an issue for me, although some dripping would occur. Now, 2 years later I am still amazed that a very-very slow improvement is still ongoing. At this pace I will be in better shape than before RP, if not there already.

[marinoperna in reply to Justfor_]

Thank you. You make things sound hopeful

[rba092075]

I played golf three weeks after open RP. Seven years later, after numerous IMRTs incontinence started. I think radiation is a bigger cause of incontinence than RP.

[OldTiredSailor]

Went thru the same long term incontinence and seemingly never ending leakage September '18 - June '19. It was a long and annoying process, but eventually led to almost total control. I did despair, during the 3rd - 5th months when I THOUGHT I should be doing better than I was.

Surgery August 23, 2018 - By late November I had great control about 75% of the time and then major leakage for a day or so....By February 2019 it was 90% control and 10% of the time a real lack of control.

By August 2019 things were pretty dry but too much caffeine, too much alcohol, or abdominal stress would cause several ounces to dribble forth.

By August 2020 I felt like I had total bladder control almost all the time with a few minor drips during times of stress.

Today, late May 2021, I do not even wear a pad unless I am going to be putting a lot of stress on my abdomen. I am very active physically and seldom have any leakage problems.

PATIENCE - my urologist says it takes at least one-year to know what the future will be.

[marinoperna in reply to OldTiredSailor]

Thanks for you time and thoughts. For me, it's the unknown, the chance of the forever incontinence, that's continually in my head. I'm a pessimist. With a 1% chance of infection with a perineal biopsy, guess who was in the hospital with sever sepsis for 3 days!

Happy Memorial Day weekend

[CHPA]

I would say about six weeks with pull ups and another six with light pads. After four months I started going g without either. At 18 months no issues unless I have too much alcohol late in the day. Alcohol relaxes the bladder… beer has liquid volume. Beyond that tenderness in the perineum for a few months but that is long in the past.

[marinoperna in reply to CHPA]

Thank you for your note

Have a wonderful Memorial Day weekend

[Iupiter]

I had a RALP in December of 2019 and still am incontinent. Very much like you I don't leak while I am lying down, and have a good degree of control -not 100%- while I am sitting. But whenever I am standing and active I have no control at all and leak continually. I go through several pads or diapers a day. I went to a pelvic floor muscle therapist for many months last year but sadly at the end she was unable to help me. I also went through a biofeedback program which did not help either. I have been doing Kegels several times every day since I had my RALP. Still no improvement. Incontinence is a consequence of prostatectomies in a given percentage of cases, and I lucked out on this lottery. Over time I have learned how to deal with this uncomfortable condition which requires me to know where the bathroom is wherever I am, so I can find a place to change my pad when necessary. I have also learned how to know when the diaper or pad needs to be changed before it becoming a moment of embarrassment. My urologist has recommended patience. He says that it may take up to a year and a half to recover continence. I will be seeing him again next month for by biannual check-up (this will be 18 months from surgery). I expect that he will be recommending I see a voiding specialist and consider having male sling procedure done. I would prefer not to have another surgery, but if the sling can resolve my problem I think I will go ahead because my quality of life is very much diminished with this incontinence. I wish you well and hope these comments help. Do not be discouraged and keep on trying nonsurgical solutions. You are only starting on this journey. Best of luck!

[marinoperna in reply to Iupiter]

Thank you for sharing.Happy Memorial Day weekend to you and yours

[Fairway]

I was among the unlucky few who never regained continence after RP. Resisted the Artificial Urinary Sphincter for a long time, but at age 73 got one, and it's mostly okay. Better than pads. 75 now and in good condition. I get botox shots for over-active bladder which work pretty well. Still impotent too, but that's another story. Don't cry for me, Argentina. I don't have cancer (five years), my marriage hasn't suffered and I'm as content as the next guy.

[B8ssist]

For me, I followed the program in Vanita Gaglani’s book and was able to almost gain continence : down to 1 pad for 24 hours with only a silver dollar sized spot. Then I did my IMRT. That blew everything I had achieved out of the water. I have struggled for 9 months to regain continence. Just had an Artificial Sphincter implanted 5 days ago. I don’t have it activated yet. But from other posts, it definitely made an increase in QOL. Hopefully it is worth the discomfort I’ve gone through with getting this implant. I tried everything, special session on the phone with Mrs. Gagliani, etc. but the radiation treatments really took their toll . Keep trying to work it out. I can’t advocate for this AUS yet because I haven’t had it activated to see what a difference it makes in my life. I’m 61, very active. But always had to be by a bathroom or my pads would overflow and I would have an accident. I spent 45 minutes just sitting in my car crying like a baby after such an accident. Not embarrassed, but the emotional toll hit me hard. I am a nurse & before I do a procedure on a patient, I checked my pad, then after the procedure, would have to use the restroom to recheck / change my Tena pads. I drink a lot of water and milk to keep my system flushed out.

I too didn’t have much leakage lying down when sleeping, just leaked constantly when standing which was 90% of my job.

[marinoperna in reply to B8ssist]

Thanks for writing. Sure feel bad about your situation, having to deal with patients while still leaking. I'm feeling bad but it's just me, just cannot imagine how you did it!Write again once the AUS is active. Have to say I'm hopping I don't have to go as far but would certainly appreciate your thoughts.

[B8ssist]

I will let you know. I have an activation date of July 6,

[marinoperna in reply to B8ssist]

Appreciate hearing. Thank You

[sryoung44]

I am in the same boat as you. My procedure was on 3/26/2021. As of a few weeks ago I am able to stand up without my bladder draining completely. I used a clamp whenever I left the house, but you can only wear it for 1 - 2 hours. And, I would need to go to the bathroom at every place we went. I can now leave the house for several hours without the clamp and with only stress incontinence.

The pain you are feeling in the rectum and the perineum is from your pelvic floor. The only way to cure this is to get pelvic floor rehabilitation. I am lucky enough to have a specialist a few miles from my home and the kegels/exercises have helped tremendously.

Also, as of today I can get a somewhat firm erection; and what I didn't know is that a male orgasm comes from the pelvic floor not just the prostate.