Incontinence Question

[gamma909]

I am 4 weeks out from my RP and have been experiencing incontinence, which is not at all surprising. I realize that I have to be patient, give things time to heal, keep doing Kegels, etc. I am not experiencing much stress incontinence or urge incontinence which is mostly what I've read about. However I seem to have more of a persistent leakage/dribble. Have others experienced this and if so, were you eventually able to become reasonably continent - 3 months, 6 months, 1 year?

[Tall_Allen]

80% recover full continence (less than one pad per day) within a year, and some have some recovery even up to 3 years.

[gamma909 in reply to Tall_Allen]

Thanks - I am optimistic about the long term and realize that statistically, things should be OK.

[Jeff85705 in reply to Tall_Allen]

I was fully continent by your definition at about 2-3 months. That was 2 years ago come February, and I am still so.

[Paulo1968]

Hi Kurt,

I had RP early April this year and I am fully continent since end of July 2018. Since mid Summer that I don’t wear any pad.

Keep doing the Kegel exercises, particularly when walking.

Wish you continuous recovery.

Paulo

[gamma909 in reply to Paulo1968]

Thanks Paulo. I had read that Kegels while standing may be more effective but had not read about doing them while walking - will add that to my regimen.

[Paulo1968 in reply to gamma909]

Initially I did the kegels while seated or laid down, then someone in this forum told me to try walking too. I sensed most of the improvements when I started doing the kegels while walking and it was quicker.

Good recovery Kurt.

[Jeff85705 in reply to gamma909]

I used to do them while walking my dog. It's very easy.

[gamma909 in reply to Jeff85705]

Jeff - did you follow any particular routine in terms of how long you held the Kegel, number of repetitions, etc.? thanks

[Jeff85705 in reply to gamma909]

I can't remember. I quit doing them after the leakage stopped. I think maybe I did them 15 times once or twice a day. I was not very compliant with my Kegels!

[MelbourneDavid]

Yes, that's how it was for a qhile. The next stage was dry during the first half of the day but dribbling when walking in the later half - that's the muscles getting tired out. By 6 months I was fully dry and after a year or so I could hold on while full for hours while vigorously active.

[gamma909]

Thanks - appreciate you sharing your experience and glad that your incontinence is under control

[spm58]

Kurt I saw a physical therapist for few weeks. Helped tremendously. They told me not to do kegel per se but gave me other exercises that mimic the way I actually move. Climbing ladders, twisting in chairs are regular moves I make so I did step ups, leg lifts etc. now I’m almost two years out and still have to wear a pad at least one per day.

[gamma909 in reply to spm58]

Thanks - I have time with a physical therapist coming up in a few weeks so this is great information to have.

[Dreamweaverman]

Hi Kurt, This is pretty normal. I have had same issues as well. It comes and goes and will get better with time.

[DanWinters]

Hey man. I was at 2 months before I noticed I wasn’t leaking all day. I am at 3 months today and wear a light pad. I occasionally notice a leaglkage at strange movements ( reaching for something ). I went to the gym today did abs and general weight lifting and only is a little leaking during leg press. Don’t get discouraged. I was very discouraged and thought I should be progressing faster. Don’t loose faith. Now I am trying to feel the same way about the ED and using penis pump.

[gamma909 in reply to DanWinters]

Thanks for the support - glad to hear you have regained most of your continence. I'm looking forward to resuming my daily running and weight lifting in another few weeks, so hopefully I can get to a manageable situation. I wish you continued good health.

[Caagane2016 in reply to DanWinters]

Let me know if you get any help with the Ed I am really stressed on that I don’t care about incontinence but the Ed is frustrating me really

[DanWinters in reply to Caagane2016]

Hey I am still on low dose sudenadil 20 mg a day. I was rold to go up to 100 mg when I felt i wanted fo attempt aome play. All it has given me is some lengthening, but no girth. I becan Muse around 4 weeks ago. It is an intraurethral suppository. Because the pellet is placed about mid shaft I get a swollen head as well as girth. bit not hard enough to penetrate anything. It feels good and hurta at the same time. I got my firat bottle of trimix 2 weeks ago and have injected 4 times. It is important to get cloae to rhe base and my erection was suppriaingly normal. I tried 01 ml of the soln. with hour boner. Tried 0.125 about the same. Tried 0.2. gave a 3 hour boner. firat hour was wonderful. tried to edge to orgasm . Did have one orgasm that felt good. I did sling urine out while masturbating and actually didnt mind at all. I would explore all options. Ordered some intraurethral cream from canada I am going to tru with the lower dose of trimix fo see if i can get my head to normal size. whth the shaft.

The Muse causes a strange filling pattern but still feels good. If u want to discuss further you can email me privately. [e-mail]

[DanWinters in reply to Caagane2016]

shoot me an email [e-mail]

[dsamuel1]

Depending on your level of general physical condition pre-surgery may have something to do with this. I did Kegels before surgery and after. I did not experience persistent dribble, but I did leak often for about two weeks mostly because I did not feel the urge soon enough. I continued my Kegels and eventually was 99% continent for several weeks. Then I would get a surprise when I sneezed, laughed hard, bent down or got out of the car on occasion. My RP was Jan. 5, 2018 and I have now been 100% continent 5-6 months post-op.

[gamma909 in reply to dsamuel1]

Thanks for sharing your experience. I am at 6 weeks post-RP and still going through 4-5 pads per day so it's a bit discouraging. I am in excellent health and have been physically active for many years. I gave up caffeine, avoid citrus, etc. to keep any bladder irritation to a minimum. Like you, I started Kegels prior to RP and continue to do them. I see MD and physical therapist next week so will see what they have to say. Keeping my fingers crossed that I see some improvement. I wish you the best of health.

[tkalaf]

Tomorrow will be 6 months from my RP. My surgeon spared left-side nerves, however due to found extra-capsular PCa he managed to spare ~1/3 of my right-side nerves. I still have some incontinence, yet it has lessoned. Wishing all, Best of Health for this holiday season!

[Burnett1948]

Burnett1948. I am seeing my Urologist next Monday and will be asking for an AUS. I had a sling put in before but was told because I had both RP and Radiation it would not work 100% and it hasn't: I'm 2 medium pads a day. I have a rash on my testicles and get up about 6 times a night to pee; because I am drinking more water to get rid of the rash. (still not 2 litres/8 cups) I hope the AUS works better. What questions should I ask the Urologist?

He was the surgeon for the sling and will be the surgeon for the AUS.

[gamma909 in reply to Burnett1948]

I would ask whether the Urologist tracks success rates, although this may be a bit of a long shot. I find that it's rare for them to track patients, whether for PCa recurrence, incontinence, etc. In some cases, the hospital they are affiliated with does not have the infrastructure to do so, even with very large hospitals. In addition, I would do as much research as you can on AUS (included a link for 1 example, but there are many more) and this will probably help focus your questions. As with any treatment, I guess you will have to weigh potential risks v. potential rewards. In my local support group, there a few men who have AUS and all of them are pleased - but this is a small sample size. Good luck and good health. ncbi.nlm.nih.gov/pmc/articl...