Minor set back with incontinence afte... - Prostate Cancer N...

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Minor set back with incontinence after initial period of 99% continence.

Dreamweaverman profile image
18 Replies

Hey Guys, Just wanted to check in. Its been about 3 weeks since surgery, and about 3 days after catheter removal I posted that wasn't experiencing any incontinence. Well, that has changed slightly. I found the more active I have become in getting back to my life routine the more I have experienced minor leakage. I will confess that I do drink a lot of water and liquids in general. I always have, so I am used to going to the bathroom more than most guys, but I am noticing that while I am asleep, and sudden movements will bring a minor drip. I am not complaining as I think I am fairing very well in light of everything. I do think of ED a lot and I have to continue to remind myself to give myself time to heal and get back to a full sex life again. So grateful I have this platform to vent.

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Dreamweaverman
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18 Replies
jimreilly profile image
jimreilly

Glad you don't sound too upset about this, it's pretty normal. And at three weeks you have plenty of time left to heal so this may be temporary or not. I'm assuming you know about kegels and I seem to remember you have talked with your doc about strategies for ED. Hope the good progress in recovery continues for you!

ernie8723 profile image
ernie8723

Keep the posts coming- it helps all of us. Keep healing- life is beautiful!

btl258 profile image
btl258

I too was 100% continent for about 3 days post surgery, after that I started leaking when I stood and sat (not a lot, but enough to be aware that is was happening). I've been using one pad during the day and one at night since then (my surgery was 7 weeks ago). Only twice have I used 2 pads during the day.

I started cardio workouts in week 3 and weight lifting in week 6. I definitely leak more during my workouts, especially on leg day. I used to drink a lot of fluids (~120 oz per day), I've had to pull that way back (~50%). I quickly learned that coffee was not going to work in the beginning. I had my first beer last night and coffee this morning. So far, so good. I think patience is the key to the whole recovery (plus lots of kegels and adduction machine reps).

Dreamweaverman profile image
Dreamweaverman in reply to btl258

Wow so happy to hear this. I’ve been really wanting to get back to gym and was wondering when others started back. Do you do cardio on treadmill, elliptical, bike? I definitely miss working out. My surgery was on 9th. A lil over 3-weeks ago

btl258 profile image
btl258 in reply to Dreamweaverman

I really mix up my cardio so as to not get bored but I can't run due to degenerative disk disease. I row, stair master, elliptical, lateral stride, Jacobs ladder, etc. I have not been on a bike since the surgery, I used to do that once a week but I'm trying to stay off a saddle for a while.

My Dr. cleared me for cardio at day 21 (but I'm young - 46, and in pretty good shape - typically 75-90 mins per day, 6 days per week). The first week or two was tough! Anesthesia is really hard on the body, I had no idea. Don't push too hard those first couple weeks. I'm now at the same cardio level as pre-surgery. After one week of lifting, I'm extremely sore (but that would be the case any time you take 6 weeks off from the gym).

DanWinters profile image
DanWinters in reply to btl258

I am day 15. i have been walking 3miles a day for the last 4dYs. this incontinance thing is scaring the crap out of me. when imstand i piss. and i love liquids and quess I am foing to have to give up water. I am a clean freak so am comstantly in shower. i know it will get better.

dentaltwin profile image
dentaltwin in reply to btl258

Wow--you guys are having great results getting back your continence. My surgery scheduled for Sept. 11, and the docs at MSKCC apparently don't want to over-promise. They are pretty cautious about the postop period--no NSAIDS. They made a big deal about not lifting anything over 10 pounds for 6 weeks post-op, which means I get out of walking the dog for a while ;-). But the restriction seems overly cautious to me. I'd also like to get back on my bicycle post-op, and obviously I'd be sitting right on the surgical site. Were your recommendations any different regarding post-operative exercise?

btl258 profile image
btl258 in reply to dentaltwin

No lifting over 20 lbs for 2 weeks and no heavy lifting for 6 weeks (said I could do anything at 6 weeks that I did pre-op). He didn't forbid me to ride bike, but recommended that I don't do that for 6 months (not a big deal for me since I only did that 1x per week). No NSAIDS for 1 week before and 1 week after surgery. The day I had catheter removed (day 7), he said to re-start Kegels 3x per day, and start light cardio and the adduction machine in the gym the following week.

Dreamweaverman profile image
Dreamweaverman in reply to btl258

Thanks for info...This helps a lot

dentaltwin profile image
dentaltwin in reply to btl258

Thanks. I'm sure they're doing that out of an "abundance of caution". I assume that they don't want to promote bleeding or hernia.

longrungo profile image
longrungo in reply to dentaltwin

Dentaltwin - We are a mutual-support group. But we are also a reality check mechanism for all members. And I have to say, for someone suffering persistent incontinence many months after surgery at a world class hospital I'm a bit irritated by your cavalier attitude. I wish you best of luck, it goes without saying!

dentaltwin profile image
dentaltwin in reply to longrungo

I'm not cavalier--I'm WORRIED! And this group has also given me some useful information about something I'd not known enough to ask about--specifically the AUS device. Thanks for the good wishes!

MichaelDD profile image
MichaelDD

I have done Kegels . Doing them way before cancer. Was A GREAT control for holding off ejaculation. I had my catheter pulled 7 days after surgery. No drip or drop. Went through 39 sessions of radiation 3 months later. No drip no drop. That was a year and a half ago. I sit here right now and "pucker" ... No problems. I swear by them.

ng27868168 profile image
ng27868168

Just a reminder to all...… to please remember guys, just in case your incontinence continues to, OR becomes a problem, that there is a solution when or if incontinence becomes more than you choose to deal with. There is a device called an Artificial Urinary Sphincter (AUS) that can easily be installed and incontinence becomes a thing of the past. As we PCa surgery survivors get older, incontinence can become more of an issue. I had my surgery 26 years ago at age 52, now 78. Only experienced very minor leakage for years, but as the years went by, it got much worse. 3 years ago I had an AUS inserted (minor surgery) and the problem was solved. Now I control when peeing occurs. Good luck to all.

tkalaf profile image
tkalaf in reply to ng27868168

Thank you for this information. Useful to know as I get older (currently at 63).

I am ~3 months post RP and have incontinence. A fresh pad in the morning (another mid-day if over-active) and a fresh pad at night. Yes, I have been doing Kegels which have helped some.

Can you say, at what 'level' of incontinence having an AUS installed is recommended? Also, if there is a maximum age where doctors no longer perform this operation?

Thanks in advance!

ng27868168 profile image
ng27868168 in reply to tkalaf

Tkalaf, As I said I had my surgery at age 52 in 1992 and at time it was an open 8" incision on lower abdominal wall. I had minor incontinence (1 pad per day until my late 60s when I suffered 2 heart attacks. No open heart surgery was needed but 2 stents inserted and several heart meds taken daily. For reasons even the Docs didn't know my incontinence worsened and got to the point where it ran out almost steady and my urologist suggested an AUS which works great. Before they can insert an AUS they go in and look up your urethra (tube that connects bladder to penis) to see if there is too scar tissue or other damage. If it is clear and clean enough an AUS can be inserted. What it really is, is basically a hose clamp attached around your urethra and a liquid filled mechanism inserted right above the penis and an "on/off button inserted in your scrotum which is attached to the mechanism and which you reach down and squeeze the button which activates the liquid that opens and closes the "hose" clamp and allows you empty and closes on its own. I know it sounds like a lot of cutting and I know we men don't like that stuff done to our junk, but the surgery is minor, usually just over night and after leaving things heal for about 10-14 days, the AUS is activated and life goes on WITH NO MORE PADS OR WET PANTS. I do not think age really is a factor as I know some 80s guys who have had it done. best to do it earlier than later before cathetors and other insertions cause scaring and bleeding of the urethra. Good luck.

tkalaf profile image
tkalaf in reply to ng27868168

Very informative, thank you!!

Jeff85705 profile image
Jeff85705

Stress incontinence is common, usually resulting in a little leakage. If I cough or sneeze, I occasionally get some leakage, but not enough to rely on a pad. If you exercise, I imagine any tightening of the stomach as with coughing, sneezing could cause drips. You could always wear a pad while exercising, as long as you have briefs or a jock strap to hold it in place. But your situation sounds pretty normal. Pretty good, actually, after just 3 weeks. I would be thinking more of the ED part than a few drips! That can take months to return to pre-op norm--if at all. Good luck!

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