Hi, all. I had an RP in March 2016, and still have a lot of problems with UI. Admittedly, I have been lazy with my Kegels. The few times I tried them, they seemed to make the problem worse, and so I stopped bothering with them. It's now a year and three months since my surgery, and have grown tired of being wet all the time, so I finally committed to doing the following regimen 3x a day:
10x 2 seconds on, 4 seconds off
10x 10 seconds on, 10 seconds off
30x rapid contract and release.
My question is, did I harm myself by waiting so long to get back on the program? I started doing this about a week ago, and there doesn't seem to be much change, although I was told it could take many weeks/months before results are evident.
What has been your experience? Thanks
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DS_WAVL
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I do not think that it is ever to late to start. That said, Kegels never seemed to work that well for me. I had a major reduction in leakage when I started to ride my bike (10 to 60 miles). At first I had to. Stop and change my pads once or twice during the ride. However, in about three weeks the leakage almost stopped. My theory is the the bike seat, along with the pads, put pressure on my lower pelvic muscles.
Doing Kegels and doing Kegels the correct way are quite different. There is good on-line guidance that helps you tell if you are doing them correctly. But admittedly for some guys proprioception is not well developed, so for them it is good to visit a Physical Therapist who is trained in analysis of pelvic problems. Not every PT is so trained, so ask carefully; the average sports medicine PT is less likely to help you.
As for too late to start, I'd say no such thing. We've had some real bad leakers full of despair and depression show up in our PC support group and return the next month all dried up. It was just a matter of getting them to do the Kegels correctly -- and ease off some of the dietary triggers.
Good luck. I saw a Physical Therapist and did Kegel exercises for almost a year and had a "sling" installed and ten years later I still leak. Remember, the surgeon cut the nerves that tell the muscles to contract. Without those nerves I don't acre how many exercises you do a day. The nerve endings can never be re-attached. Get used to it!
I had 2 slings installed and neither worked for me. I then had an artificial sphincter inserted and what a difference! I went from still using pads with the slings to just a thin shield for safety backup for occasional drips. I highly recommend the AUS if you're still leaking after having a sling installed.
I'm 72 and had RP in August, 2016. Post-op, I was told that my urinary sphincter below the prostate was fine. Due to extra-capsular extension, the surgeon said he was able to retain "some" of the nerves on one side only. I share your frustration with Kegel discipline. My orders from a PT were 20 reps (5-second squeeze/10-second rest) three times daily for a total of 60). My iPhone alarm is set to remind me.
After 10 months, it's all "stress" incontinence. I'm dry at night. During moderate daily activity (sneezing, getting up out of chair, walking around the house, climbing in and out of the car), I feel an occasional squirt. Exercising of any kind (vigorous walking, free weights, golfing) still empties me completely. For 18 holes, I change a maxi Depends Guard at the turn. If I'm not careful with social drinking, one too many can start me leaking like a sieve.
Just to be on the safe side, I'm on a Guard 24-7, changing three times a day on average. Except during exercise, I could probably drop back to a smaller size now. One side benefit: less space used when packing for a two-week cruise and easing my anxiety about being stranded without a proper supply.
To help early on, my urologist put me on 20 mg of diloxetine (Cymbalta) twice daily, an off-label use related to the side effect the drug can have on the urinary sphincter (one of the warnings is difficulty urinating - hmmm...). After six months, I decided to discontinue use. I didn't like the way it made me feel, and I didn't like the idea of depending on a crutch for control. Since then, I can't say it had much effect one way or the other, and I feel better drug-free.
I'm not a doctor, but I'm not sure about the comment that if they "cut the nerves," you would not have urinary control. For ED, true, but if you can Kegel, it seems your brain is communicating with the right muscles, and according to my urologist, the exercise is "training" the overall pelvic floor to take over control.
At the rate I'm going, it looks like I'll join you and be among the unfortunate 5% who aren't mostly back to normal after 12 months, so the need for some sort of protection looms for the indefinite future. Since I want urinary control before I address ED (which is total), I have a potential challenge. The urologist is helping here.
Do Kegels work? Unlike you, they don't seem to make things worse for me. All I can say is that I seem to be moving in the right direction, but not nearly as fast as I would like.
I agree with everything tjdillion had to say about the artificial urinary sphincter! It has been a God Send! I had PC surgery 22 years ago at age 52 and had only minor IC for 15 years but as I got older and suffered 2 minor heart attacks, for whatever reason my IC got MUCH worse. My original Urologist only did the sling but even he wasn't too keen on its success, so I saw another urologist and he felt the same way and recommended I have a AUS installed. It works just fine. I highly recommend it to anyone who needs it. It is a minor procedure and after a short period of healing, it is activated and problem solved. Good luck!
I was told that starting Kegels anytime is good, and to do it every 2 hours if possible. Mine is 20 reps of holding for 3 seconds, and work up to 5 seconds or more over time. Just like biceps or any other muscle, any time you start exercising is a good time and the muscles will respond to the effort. I may add the 10 second reps or at least try them. Seems everyone has their own regimen, but I'm sure just doing it is what is important.
My surgery was 5 weeks ago and things are seeming better, some days if I'm careful about laughing, and coughing, and standing quickly or deep breaths while preparing ahead of time by tightening the muscle group.,
In my experience, Kegels improve continence over _months_, not weeks. So, if you commit to doing them, it'll be for the "long haul".
I had surgery 10 years ago, did lots of Kegels initially, and was quite dry. I slacked off the Kegels, and got wetter. Recently, I re-started, and got dryer.
So for me, Kegels really work -- _if I do them consistently_.
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