How does it work?

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This question is for those, like me, who are trying to regain their urinary contenence, and (unlike me) are lucky enough to have a pelvic floor expert working with them. I'm just over three months out of my prostatectomy, and I'm not seeing much change, even with 30 kegels per day. When I stand from a sitting position am I suppose to be tightening my pelvic muscles, or should they be able to pinch the urethra naturally just due to all the kegels I have been doing. I'm trying to teach my brain not to think it's ok to just go in the pad, and get to the toilet instead, but I'm not sure how to do it. I finally found a pelvic floor expert, but can't get on the schedule for another 6 weeks. They are in very short supply where I live.

 

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Following.

 

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I had same issue with pelvic floor specialist. It has helped. I was told to try and hold it as best can. Also, when stand make sure to exhale when doing legal to relieve pressure. I am 2 months removed from surgery and seen great improvement over last 2 weeks as not always running to bathroom, sleep at night without pad. I am still having issues when walking.

 

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I certainly can empathize with you. I had the exact same questions and even my pelvic floor PT kept giving me platitudes like "your body will learn" and "it will happen, don't worry" which didn't help. Eventually, during one exercise with her standing right next to me, I leaked right out my shorts. Not a lot, and it didn't get any equipment wet, but she was very surprised. She hadn't realized I had been leaking during our sessions (all previous leaks had been caught by my pads, this one time my penis was pointed in the wrong direction). At that point she gave me the only real advice that made sense. I needed to learn how to urinate when my diaphragm was expanded (inhaling). Then contracting while doing my Kegels (exhaling) should cut the flow off. I have been more conscious of this when purposefully urinating at the toilet ever since. And it may be teaching my body something positive because I do seem to leak less now. I don't know if this is an answer, but it helped me.

 

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I'm extremely discuraged by this process. I have tried to tighten the muscle when I stand, but the urine just blows past into the pad. The only way I have had any chance of making it to the toilet was if I stand, and walk bent over like Groucho Marx. I realize this has nothing to do with my muscles, and is probably detrimental to the process, but at least I'm not wasting another pad. After 3 months I'm wishing I had not had the surgery.

 

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I dont want to be a Debbie Downer but not everyone gets their continence back after RP.
However, there are solutions AUS, slings etc but one of the big problems is when, if ever, to throw in the towel.

 

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TiredofBeingWet

I can definitly relate. In my case the surgery took place in Feb. Where I live robotic surgery is not an option I'd have to travel outside the country to have it done. So the surgery was done the old fashon way. The wait for the surgery was rather long and panic was setting in. I did investigate the option of DaVinci surgery but was assured by my doctor that these procedures are compatible and very dependent on the skills of the surgeon. Made sense at the time. Well since catheter was removed I have absolutely no control over my bladder, don't feel anything coming out sort of like I have no feeling in my pelvis.. totally numb around private parts. I gather nerves had been damaged.I would love to try to control my bladder but it never gets full since everything goes into the diper non stop. At this time I am on 30 dipers a day. Am having miserable time and am full of regrets re: giving up on possibility of robotic surgery. I do Kegel exercises on my own since physiotherapy won't book me in before 6 weeks passes after the surgery .. Perhaps the good news is that at night when I am in bed I am able to kind of feel my bladder getting full and am able to get to the bathroom ( 2 meters away ) with letting out only a few drops into the diper . Would appreciate if someone would confirm this or am I lying to myself ? Hoping for the best but sure got blindsided. I did expect some side effects after the surgery but this total lack of bladder control is shocking. Good luck to you, TiredofBeingWet, I do understand how you feel.

 

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At 66 years old i'm ok with the AUS option. I'd be extremely happy just to see a move in the right direction. I did have the di Vinci surgery. My nerves were supposedly spared in the process, but I was told that would not help heal my incontinence. My problem with the process is once the surgery is done there is no post surgery plan. They pulled my catheter and said drink 120oz of water and do kegels. They gave me a paper that said "do kegels", that was it. 3 months later, when I finally got to see a pelvic floor expert I had one appointment and now have to wait 3 weeks for the other dr to be free. After that appointment I will need to wait 6 weeks for the next appointment. It's hard enough to find a pelvic floor dr and even harder to find one who works with men, especially where I live, in a large city,in the S.W. U.S. Now I'm starting to rant, but I'm just looking for a sign if hope.

 

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The literature says that most people regain continence within 12-18 months with kegels and retrain8ng the brain, etc. Since I also had follow-on “salvage radiation,” my incontinence worsened until I was leaking 40+ ounces per day. After 2.5 years, I had the AUS implanted and got my life back. Don’t give up hope.

 

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Thank you Ricard. That does help. I'm just looking for some improvement, not necessarily complete continence.

 

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Yes from what I understand now it takes a long time to regain bladder control. I guess someplace along the way my ignorance got the best of me and it never crossed my mind how bad urinery incontinence can get after the surgery. Getting wet the moment I move/stand up or having urine running down my leg while walking doesn't feel sexy at all.. but than again according to some teenagers elders over 60 yoa should be taken behind the barn ..oh well such is life .

 

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Hang in there and have patience. That’s the hardest part. Do your kegels, walk as much as possible, and stay away from alcohol. You are early in the process. I was wearing an external catheter to work at your timeline. I say improvement 5-6 months after and I currently use one light pad per day year and half post RP.

 

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Thanks for the encouragement from everyone. Josh. I agree about not understanding how bad incontinence could be. I was completely ignorant.I also believe what made everything worse was having to be transported to the hospital, about 7 weeks after the surgery, in the middle of the night, with a bad u.t.i. and sepsis. While I was there they also found two blood clots in my leg. Now I also see a heart and blood doctor due to the blood clots and sepsis.

 

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TiredofBeingWet, sorry to hear about your struggles and other health issues. Hopefully with time we'll be able to overcome it. Hard pill to swallow indeed. I did prepare myself for the surgery pretty good, so I thought, am pretty healthy otherwise. While waiting 6 months for the surgery I had an opportunity to talk to few doctors about radical prostatectomy. I was left with an impression that this is just a routine surgery with some side effects especially if not done with the help of DaVinci. Only now I realize that this surgery has a life altering effect on some of us and it is far from being just routine. Kick in the groin indeed... my groin is numb won't feel any pain anyway. Keep me posted pls

 

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Yes it is a challenge mentally and physically. And I understand that many experience treatment regret. I did a bit of research on the various treatment options and several men I know have dried up pretty well after the RP operation. However,I was warned by my surgeon that 20 per cent do not. He said that for most the leakage is very manageable with pads. Of the 20 percent about 5 percent may need a surgical solution. I had little improvement for the first three months, then got COVID and coughed endlessly which caused a lot of leakage. I began to see improvement 5 months onwards and was dry at night and for a wee while in the morning. I needed light shields early in the day with just a few millilitres. Later in the day the leakage would get heavier. That patten has not improved really and I now almost two years post op. I have had an almost constant head cold and cough for the past six weeks and as a result leak each time I cough. I was using an external catheter occasionally in the past when I was away for the whole day but have had to revert to using them a lot since I got this virus. I was very stressed at the one year mark when I began to realise I was in the 20 percent club. I actually went for 6 weeks counselling which helped. I have now learned to manage things reasonably well. Of course I am disappointed with the outcome regarding side effects. However, I have also recognised that many cancer sufferers have to manage ongoing side effects. My neighbour who had radio and hormone treatment can't leave his house before 10 am because of bowel urgency caused by the radiation. Another has a stricture, urinary urgency, some incontinence and severe penile retraction caused by brachytherapy. One thing to bear in mind when you read posts on a forum is that we all share our personal journeys and try to be encouraging. However,you must remember that everyone's journey is personal and another person's very positive experience of recovery may not be yours

 

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I was doing 30 Kegels per day, and after a few months I started to improve. It's a long road, well it was for me. Luckily I never once leaked at night for some reason. BUT it was terrible apart from that.
Skip forward 16 months and after buying a device that did the Kegels for me I am now dry. My life is back to normal. Sometimes when I'm sitting down and fart I may leak a tad but nothing bad enough to require a pad. If I cross my legs I'm safe haha.
Hang in there and keep the faith, and keep doing Kegels 3 x a day.
Message me if you want to know about the device that not many here seem to know about.
My surgery was old school with a knife and nerve sparing on one side.
That also works again

 

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Hi TiredofBeingWet.Gets you down doesn't it? I had op 18 months ago. I was leaking badly when I stood up, walked or did anything strenuous. I had vertually no improvement for 5 or 6 months and then I had sudden vast improvement followed since then by slow progress. I only wear a pad now if I am doing manual type work or I am going out for many hours. Even then the pad does not get very wet. I do also wear washable incontinence underpants as a matter of course all the time and these do get marginally damp over the day. I feel I can control it now and it does not bother me that much. Everybody is different though and for you I would say it is still early days. I was doing kegals every 30 minutes until just before I improved significantly. My CNS told me off and said I should limit it to 3 times a day, each one ten slow followed by ten fast. I hate being told off so I complied and about 2 weeks later my vast improvement occured. No idea whether that had anything to do with it. I bought a plastic urine bottle and used that during my early days as I was standing up and when I reached my destination in the car. That helped me no end mentally. There is an Android App which the GB NHS push called 'Squeezy'. It only costs a few pounds and I have found it very worth while and have used it all the way through. It has lots of adjustments and provides an alarm reminder to do Kegals and keeps a record of each bout. It also has lots of useful information on how to do Kegals, has a bladder diary, etc. I have found it to be very worthwhile and a 'friend'. I feel it is there watching out for me and nagging me and possibly without it I would not do the exercises as much. Be patient and grateful that the cancer was found and dealt with.