Fighting Incontinence after Prosatectomy

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I am posting this in the hope that it may bring comfort to men who may have just gone through prostatectomy and may be feeling that their expectations of how their recovery should be are totally different to what they are currently experiencing. I had a robotic radical prostatectomy in January 2022 and although the surgeon had talked about the fact that I would experience incontinence I didn't expect to battle the level of leakage that I did after having the catheter removed. For the first few weeks to a month just standing up from a seated position resulted in 100-200 ml of urine just pouring out of me without even having any sensation of needing to urinate. It was so severe that I sat with a medical bucket by my side to catch the drainage whilst heading for the bathroom. I was getting really depressed, thinking that this was going to be my new norm. I saw a physical therapist who specialized in the field of incontinence and she went into great detail to show me all of the muscle groups that I would need to strengthen to help retention and which ones I needed to relax so that I didn't unintentionally push urine out. The knowledge that she armed me with, whilst getting me to familiarize the feelings that I would have by doing each exercise correctly, slowly but surely started to pay dividends. I am now 6 months on and like a lot of people have very minor accidents when coughing,sneezing or some exertion but I am playing sports again (golf and pickleball) and at age 66 am intending to start playing soccer again in the fall. I really feel that if I hadn't been lucky enough to find the right therapist I might not have had the ability to return my life to some normalcy. Believe me, two months in, I didn't feel that I would ever be able to function in public but my therapist pulled me through and I make sure that I do my exercises regularly. I appreciate that we are all different and get different results but keep working at it. In addition, I spoke to one of my best friends who had RP in the UK and he was actually given a course of pelvic floor exercises to do for two months before he had his surgery. Due to the fact that he had a strong pelvic floor before his op he actually regained his continence within 2 months. I wish you and all RP brethren the best of luck!!

 

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Thanks for sharing! So glad you're doing much better. After RP surgery in June 2022, my catheter has been out 6 weeks or so now. My leakage doesn't sound as bad as yours, but I agree that pt can be so important. Not only to help us physically, but also mentally.

 

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Thank you for this post. I am just about 4 months post op and still leaking a lot. I did think I was making a little progress at the beginning of this month but unfortunately got Covid. I have been coughing a lot which of course has meant lots of leaks. I decided to use an external catheter for a couple of weeks during the day and I can use a pull up at night, although it is nearly dry. I still don't have any sensation of needed to go to the loo during the day but I do get up to pee normally once or twice during the night. At times I do feel very disheartened but I know I need to be patient for a little while longer to see if there is any further improvement. If not I will definitely consider an artificial sphinter. Although I have to say I don't find the external catheter too troublesome, It provides me with a welcome relief from the damp and warmth especially in the summer. I'm not sure if the urologist or pelvic floor physio approve of the sheath or not, although I still do my 4/5 Kegels each day. If I can get over this cough soon I will revert to pads/pull ups some days and only use the sheath when I'm going away for the day.

 

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Glad to hear you are getting better…for me I am stil incontinent 24/7 after 5/12 years…but I am ‘alive’…

 

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Excellent post! Thank you for sharing. Could you also share a bit about the exercises you're doing? I’ll bet that would help many who may not have received the excellent guidance you did from your PT.

 

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Some exercises I'm doing -
1. Lie with hips knees bent. Squeeze pelvic floor for 10 seconds. Rest 3 seconds, Repeat 10x. 2x a day.
2. Sit, slowly squeeze pelvic floor for 10 seconds, count out loud. Rest for 3 seconds. Repeat 10x, 2x a day.
3. Tighten pelvic floor. Take a step sideways, 10x to each side. 2x a day.
4. Squeeze pelvic floor and hold for 4 steps, walk normally for 10 steps, repeat sequence for 2 minutes. 1x per day.
5. Stand, slowly squeeze pelvic floor for 10 seconds. Rest for 2 seconds. Repeat 10x, 1x per day.
6. Stand, squeeze pelvic floor and hold. Raise arm and reach (like putting a book on a shelf) going on to toes and come back down. Repeat 20x. 1x per day.

"Squeeze pelvic floor" has been explained to me that it's like pulling your penis in like a turtle head into its shell, while also trying to hold back gas from behind.

Also, this is not medical advice, just some things I've been doing besides walking!

 

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Some exercises I'm doing -
1. Lie with hips knees bent. Squeeze pelvic floor for 10 seconds. Rest 3 seconds, Repeat 10x. 2x a day.
2. Sit, slowly squeeze pelvic floor for 10 seconds, count out loud. Rest for 3 seconds. Repeat 10x, 2x a day.
3. Tighten pelvic floor. Take a step sideways, 10x to each side. 2x a day.
4. Squeeze pelvic floor and hold for 4 steps, walk normally for 10 steps, repeat sequence for 2 minutes. 1x per day.
5. Stand, slowly squeeze pelvic floor for 10 seconds. Rest for 2 seconds. Repeat 10x, 1x per day.
6. Stand, squeeze pelvic floor and hold. Raise arm and reach (like putting a book on a shelf) going on to toes and come back down. Repeat 20x. 1x per day.

"Squeeze pelvic floor" has been explained to me that it's like pulling your penis in like a turtle head into its shell, while also trying to hold back gas from behind.

Also, this is not medical advice, just some things I've been doing besides walking!

I've been trying to keep up with kegaling these past couple of days. I did a set yesterday and have to do them today.

I'll be honest; I'm very lazy when it comes to kegaling - I don't typically get in the habit of doing them because I don't even have advocates on my side to deal with the emotional toll continent issues present with (in real life) - I suppose you could say this support network is; but it's different.

I'm part of another support network that holds events and gatherings (which I think would be beneficial for myself to find others who are like myself) - but continence issues support obviously are not something probably people would go to an in person gathering on. Given it is such a personal matter.

But I'm trying; thank you for the tips fuzsykiwi48. I will try to continue to push through with the kegaling and will also try your tips. I think given my condition is more neurological than physical- I will still try ANYTHING to not have to deal with the pain and leakage and to improve muscular tone.

Blessings In Christ,
Honeeecombs

 

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Had my RP 5/27/21 and despite much PT and Kegels, I’ve decided my quality of life isn’t optimal so I am scheduled for an AUS on 8/26/22. I suspect my age (78) and/or the non-nerve sparing part of the RP may be contributing factors

 

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Had my RP 5/27/21 and despite much PT and Kegels, I’ve decided my quality of life isn’t optimal so I am scheduled for an AUS on 8/26/22. I suspect my age (78) and/or the non-nerve sparing part of the RP may be contributing factors

Hey DrRick; I don't think we've conversed before (I'm assuming you are a doctor of something so I pardon my lack of knowledge).

Can AUS be used to treat severe bladder spasms in young adults? I suffer from extreme pain in some cases and severe urgency and continence issues related to urination at night. I don't know if I would be a fit for an AUS given my young age; but I would do anything to be able to have my life back. Urologist I've met with recommended Interstim and Botox; I saw improvement with interstim but am going to have to go through the trial again; and Botox I am apparently too young for.

If you do not know - I understand.

Blessings In Christ,
Honeeecombs

 

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I did my kegels religiously after PT. No incontinence issues. Lucky?

 

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I am a retired DDS (wrong end of the body!) and I don't know the indications for an AUS other than related to RPs. Doesn't hurt to get a second opinion to what your current urologist has recommended.

 

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I am a retired DDS (wrong end of the body!) and I don't know the indications for an AUS other than related to RPs. Doesn't hurt to get a second opinion to what your current urologist has recommended.

Nice! Thank you for your response. I'm going to be looking for a new urologist once I get set up with a primary care physician.

Will follow up with everyone to see what my options are -

Blessings In Christ,
Honeeecombs

 

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Some exercises I'm doing -
1. Lie with hips knees bent. Squeeze pelvic floor for 10 seconds. Rest 3 seconds, Repeat 10x. 2x a day.
2. Sit, slowly squeeze pelvic floor for 10 seconds, count out loud. Rest for 3 seconds. Repeat 10x, 2x a day.
3. Tighten pelvic floor. Take a step sideways, 10x to each side. 2x a day.
4. Squeeze pelvic floor and hold for 4 steps, walk normally for 10 steps, repeat sequence for 2 minutes. 1x per day.
5. Stand, slowly squeeze pelvic floor for 10 seconds. Rest for 2 seconds. Repeat 10x, 1x per day.
6. Stand, squeeze pelvic floor and hold. Raise arm and reach (like putting a book on a shelf) going on to toes and come back down. Repeat 20x. 1x per day.

"Squeeze pelvic floor" has been explained to me that it's like pulling your penis in like a turtle head into its shell, while also trying to hold back gas from behind.

Also, this is not medical advice, just some things I've been doing besides walking!

Thank you Fuzzy to taking the time to write that out. I'm going to give those a try.

 

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Thank you Anxious.

Your comments certainly gives me hope for a better life..

 

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I USED A BALL BETWEEN MY LEGS AND THEN SQUEEZED ITFOR 5 MINUTES 3 TIMES A DAY...IT WORKED!!

 

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I USED A BALL BETWEEN MY LEGS AND THEN SQUEEZED ITFOR 5 MINUTES 3 TIMES A DAY...IT WORKED!!

It's possible the upper leg muscles help the pelvic floor strengthn; I'm not 100% sure on this. But if there is any merit to this I would look into this.

I really hate my bladder problems; and wish there was a way to cure the spasms that I suffer from. I don't think I can live an entire life with these symptoms and pain.

Blessings In Christ,
Honeeecombs

 

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I USED A BALL BETWEEN MY LEGS AND THEN SQUEEZED ITFOR 5 MINUTES 3 TIMES A DAY...IT WORKED!!

Thank you. I'm keen to give it a go. Please tell me more.

Do you put the ball between your knees or higher up?
What size ball do you use?

 

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The ball I use is about 8 inches in circumference. I did mine between my thighs.
If you go on line and type in Kegel exercises it gives you the instructions.
Good Luck!

 

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Yes, the squeezing a ball is something also recommended to me. Lie on your back with a ball or pillow between your legs. Squeeze your knees together for 5 seconds, 20x per set. Increase the seconds and reps and it gets easier. Don't worry about your pelvic floor during this exercise, I think it's helping the muscles around it.

 

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The ball I use is about 8 inches in circumference. I did mine between my thighs.
If you go on line and type in Kegel exercises it gives you the instructions.
Good Luck!

Thank you; I found one for cheap at Target. Thank you @Alfa13 for asking those questions.

Does anybody here know if this is more efficient than kegaling or does it basically serve the same function? Thanks

Blessings In Christ,
Honeeecombs