incontinence following prostratectomy

I had RARP including 18 lymph nodes removed (3 were positive for cancer), and was incontinent so much afterwards that I started to get really depressed. Threw myself into a Kegel regimen that included 4-5 sessions a day. I am retired so I had the time, no real excuse to not do it. Took about 6 weeks of dedicated effort, but I no longer wear any type of pad. Admittedly I have an oops once in a while, especially since I started proton radiation treatment last week, but overall the Kegels worked for me.

UCSF had. A patient conference last weekend. A surgeon talked about incontinence and this Image was shown during his discussion about incontinence problems after surgery. He did mention it takes up to a year for some people.

Thanks so much jervl.

this really brings up another issue for me.
according to the research there is a significant lack of research and agreement on how many kegels to do a day (the only big meta-analysis specifically on male incontinence following RARP)
So I hear many recommendations to do three sets of as many as 20-30 slow contractions (kegels) One person recommended 10-15 every hour. My urologist recommended three sets of 30 long slow ones ( 15 seconds) I asked about quick ones as well and he did not think they were important
However,
1. many experts recommend slow and fast kegels ( either one or two second short ones followed by one or two second relaxation/rest, and then ten to 15 second long ones followed by ten or 15 second rest sessions) This really makes sense and the research seems to support it
2 I wish 'more were better' but I can definitely tell that my pelvic floor muscles get tired/sore/stiff over-used later in the day, sometimes they are tight for hours. The PT I am seeing has advised me to work on form and only do two sets a day.
3. I guess in years to come some agreed upon recommendations backed by research will be out there. I tend to think I need to be careful not to do too many. I wish I could do more 'work though the pain' ( no pain no gain" but I feel like that has already backfired on me a little I would love some more opinions on this however

Thanks Jeff
very interesting article
I really appreciate folks posting replies

It's interesting how all of us post RALP patients are all over the map on recovery. My surgery was 7 weeks ago. Did very little Kegals and was completely dry after the catheter came out. The nurse emphasized no riding a bike, motorcycle, horse or anything else that puts pressure down there for 3 months. She said 6 weeks for normal activities. I was feeling really good at 6 weeks so started doing more strenuous yard work than I should have (planting some trees). As soon as I urinated after this I learned I had to stand at the toilet for 30 seconds or I would dribble. it went away a few days later as well as the abdominal soreness. I'm going to stick to my normal walking routine. My only minor setback was caused by overdoing it.
Wishing you a quicker recover. I threw up a prayer for you!

I'm no fan of any "medical professional" who tells you to "live with it".
"We may have to wait" sounds a little more hopeful and a lot more honest.

I had the prostatectomy last September & have been pretty incontinent since (up to 7 pads per day).
This is despite 6 months of PT before & after surgery.
I just don't have the coordination for it.

I understand that they don't consider an artificial urinary sphincter until a year after surgery - to give it time to get better on it's own.
In my case, they've given up & I'm having the op 9 months after the surgery.

So as everyone says... we're all different.
In your case, "put up with it" probably means they usually wait 12 months before taking the next step, so try to get through until then as best you can.
If you're really struggling with incontinence (physically, financially or emotionally - or all 3) tell them.
Tell anyone who will help.
Now is not the time to be shy & not want to "bother anyone".

Thank you so much for sharing. I am happy that you had a good experience The dribbling is sort of like mine after trying some gardening/ Last week my wife asked me to take a small stump out but this involved swinging a mattock and using a digging bar which sent my incontinence way back I had to take it easy for 2-3 days then after that I tried to plant some vegetables and put some mulch down.; same thing incontinence all over the place to 2 days. I will need to really go slow and avoid lifting and using yard tools.
I hate incontinence
I really appreciate you sharing what happened to you thanks

thanks peter
can you let me know how the artificial sphincter goes,?
I have heard about that and a sling or something like that/ why did you chose that option?
I really hope this goes away but who knows/. It may be that I am 71 and things are taking longer in general.
I agree with you; I am very frustrated with being told to more or less wait, live my life, etc it is a big deal to be leaking almost all the time, around family and friends/ I do not see ever getting comfortable with this I can try to stay indoors or by myself most of the time, avoid strenuous activities, but I do not want this to go on and on, Three plus months already and it might go on for nine more months> I really hope I can turn some corner in the near future

One of my issues is trying to determine how much to push things, continue to do physical activity, do my daily workouts but also know when to back off and rest / I am just now learning that there is a sort of 'delayed reaction' following strenuous activity., I love swinging a mattock, digging holes, carrying heavy things, I love working and doing things all day long. However- now- when i do some of these things, even just a couple of hours of gardening- I feel great, my mood is excellent (like my old self) but then about 4-5-6- hours later the wheels come off. I also can now tell that my pelvic floor muscles are sometimes hypertonic and spasm ( get tight and cannot relax for hours.,) just like doing physical things, I have to monitor my pelvic floor muscles to push some and also make sure I am backing off some or trying to relax them
I really appreciate the comments and if anyone has any tips or advise I would love it

I've heard nothing but good things about the artificial urinary sphincter. The male sling doesn't sound as effective (although it's less invasive in that it's installed & you forget about it.)

As many here will tell you, it's worth the effort continuing with the Kegel exercises if you can.
That would hopefully avoid surgery altogether, if you can master that.
We'll never get comfortable with the pads.
They're horrible in so many ways. I know three months of this seems a very long time. Each day is horrible. So the prospect of a year of this is not fun.

I've learned to just relax & sit in my recliner for large parts of the weekends.
It's pretty frustrating.

There are plenty of guys here who have either mastered the pelvic floor exercises or have had the artificial urinary sphincter (or sling) who should be able to share their experiences.

There is light at the end of the tunnel - and it's not a train.

Anyway, here's the male sling & the artificial urinary sphincter.

Look into a new product called ProACT. They put a couple of balloons near your urethra and then bring up the pressure and it Works apparently. Someone in this forum had great success with almost complete Incontinence