significant "leakage" after prostatectomy

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Hello, I had my prostate removed due to pca diagnosis in mid november of 2023, Im nearing the 3 month post surgeey mark, and although so fsr my psa is undetectable whoch is more important , the battle with incontinence is a tough one. Basicslly if I move around, bend over, or make any move at all I leak, and I have zero control. However at night or early evening ince Im at rest or sleeping I can tell when I need to go and still leak some but not vey much as I get up several times to use the bathroom pretty succesfully.
Im doing kegels and definitely have improved from my first 15-30 days post surgery but for the last 45 days seems like there has been zero progress. Anyone here have a similar experience and improved significantly with time alone, or any other method? Thanks in advsnce for anything that might help. Cheers

 

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From all I have read, it can take at least 12-24 months for major improvement. Patience and continue the Kegals;

 

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Go to a good pelvic physical therapist asap. Good to read all the history on here. You find a lot of responses to this question. Good luck. Be patient.

 

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Go to a good pelvic physical therapist asap. Good to read all the history on here. You find a lot of responses to this question. Good luck. Be patient.

 

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tks i started doing that and stopped due to cost but im going to bite the bullet and ho back , thank you.

 

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@RBG Thanks its a tough pill to swallow but Ill take it over pc.

 

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Hi Nelson1olivia,

Welcome, you’re not alone here. I suffer from a neurogenic bladder and experience urge incontinence and nighttime wettings.

I know it can feel defeating at times, but you’ll get through it. We all do.

Sincerely,
Honeeecombs

 

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Nelson1olivia. I had a similar experience and saw slow improvement after doing aggressive kegals and months of pelvic floor physical therapy. By the time I was 11 months post RP I was still suffering from significant leakage to the tune of being stuck in diapers. I decided I needed to take the step of additional surgery. I underwent a AUS surgery which improved my situation significantly but still needed 5 pads per day. Then 4 months later I had an AUS revision and a smaller cuff was placed. Now I’m essentially dry unless I lift a heavy thing or sneeze. I’m 64 and otherwise healthy. For me it was the right decision as I’m feeling happy and normal again
Boomer 59

 

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@Honeeecombs thanks brother I hope you find a solution also. Cheers

 

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@boomer59 thanks for your input, In starting out but quickly finding out that things are not as I thought. I will press on and if no improvement after 12 months i will seek other options. tks

 

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@Nelson1oliva - Man, I hear ya and I'm with ya. I am having the same experience. I'm 4.5 months out from my TURP surgery, but I had a couple of bad complications after that that required surgery and catheter use. So, I feel like I am back at square 1. I am seeing a PT and I am trying a therapy during my visits that I don't generally talk about at the dinner table. Electronic probes set around my anus send signals that I can monitor on a screen, and I do kegals between the pulses. The idea is to train the brain to talk to the nerves that control the sphincter. I've just started this kind of therapy, so I can't say if I'm making progress. I certainly want to try this before considering additional surgical options. Good luck and I hope you find success.

 

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@clangley1959 thanks man I appreciate the feedback. Im going to go back to pelvic floor pr , I stopped because she wanted to do the finger in the but routine and im so sick of that from the last six months of biopsys that I ran away but it seems there is no escaping more probing. thanks and I wish you the best of luck.

 

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I am 4 years post-surgery. Still, use 1/2 a pad as I leak on occasion. I am now going back to basics and am trying to strengthen my core and lower abdominal muscles. At 70 it is a bit of a challenge. try not to get discouraged. Good luck.

 

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Wow four years, Its interesting what Ive read on here. good luck with the new plan I hope it works out. Cheers

 

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After 2 years of kegels I still leaked bad enough that I needed diapers and pads. I got the AUS surgery April last year and after the 6 weeks waiting period it was activated. It felt like someone fixed the dripping faucet that drives everyone crazy in the middle of the night. Best decision I ever made. So if kegels fail for you after doing them for 24 months, there are other alternatives. Hope they work for, but please don’t be discouraged. Remember not doing anything about the cancer would have been a bad mistake. Enjoy life. Go fishing cancer free.

 

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@Cay fully agree man, I had very high risk pc and had to take quick action so it is what it is. Thanks for the tip, Ill keep it in mind. Cheers

 

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I slowly returned to being continent around the 3 month mark post RP. My night-time control was the first to return at around 2 months and by month 4 I was continent 24/7. If you now have bladder control at night time it might indicate future improvement in daytime control if your recovery is anything like mine was. But as others have said, recovery can take a while.

I also did PT - started a month after the RP, and continued for a couple of months. All the best.

 

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@Bobsyeruncle thanks man I appreciate this alot, Im actually almost fully continent after I retire to bed for the evening and wstch tv before sleeping. I can sense the urge and have time to urinate, even though its quite a few times before I fall asleep and then Im good almost always till early am, and pad is slightly spotted. My days suck still but this gives me hope, at least it someone with a similar experience even if it doesnt go like this for me its hope, Im happy for you man. Cheers

 

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Hi dr, I am 4 years and 6 months post-surgery. Still, use 2 - 3 small pads per day. I'm now 54yrs. try not to get discouraged. Good luck.

 

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I’m one year out from RP and still leak about 300ml/day, mostly in the afternoon and evening. Very little trouble at night. Saw the urologist recently who said this was a “moderate” amount of leakage and recommended a possible sling or AUS as the next step. I’ve had two major surgeries in the last year so want to avoid another but the pull ups and pads are getting old. Puts a crimp on long distance travel especially to places where such things are not readily available. May give the Kegels a bit more time.