How long were you Incontinent? How did it come back for you?

Posted by golive1952 @golive1952, Jul 29, 2023

I realize this is different for most patients but I am fully incontinent after 3 weeks and often hear people say they didn't have the problem.

Can you offer a short sentence as to the length you experienced this and what came back first? I am able to hold some of it in the middle of the night long enough to get to the bathroom for a 1-2 second stream.

How did it come back for you?

Thanks in advance
Gary O.

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I had a RP in 2006 . For 2 years afterwards I had to use 2 large pads every day. Then I got the sling installed. Now I’m down to one medium pad per day. But i experience frequent urges to pee. I also have to pee like every hour during the day and 3 times at night.

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Formal PT for Kegel exercises helped me. 1 session before RP and a number of sessions after.
Wake up at night a few times, but no major accidents.
I have been fortunate with continence.
Wish you better going forward.

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I had Ralp 6 months ago and also felt cheated when I wasn't continent in three weeks, thanks to watching those guys on YouTube. But I am almost there now and have high hopes for being very dry all day soon. From the start, sitting and lying down were easy, I rarely leaked. Every time I stood up, I used my kegels to get me to the bathroom to void. I am still that way at night, getting up once or twice a night to empty my bladder just in case. In the daytime at the start, I went from thick pads (in my depends in case of oversaturation), one in the morning, one in the afternoon, and then just the empty (and hopefully dry) depends in the evening. Now I don't need the depends at all, but still use pads in my underwear. One thick pad will last all day if I'm just doing normal things. If I work out (like 2 hours of pickleball) that requires its own thick pad. If I play 18 holes of golf, and hang out with my foursome, that can last over 5 hours. For that I have taken to an external catheter which straps to my leg and is hidden under my shorts. I drain it at the turn and it works out very well so far. I do the kegels and have far more control now than I used to have. The nurse said one day it will just magically happen. I don't know about that but it is improving. One caution- a friend who had this several years ago still puts a light pad in his underwear for that unexpected cough or sneeze which still makes him release a little urine.

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I'm with @michaelcharles ".. Kegel exercises helped me" It sounds like I was a little lucky in this regard, but, I only used pads for the first couple weeks, and that was a back up plan.

Three weeks in tells me more like 10 days(ish) post cath? so, if that's correct, you're really early in the process. Be a little patient...
With that in mind...
Kegels, more Kegels, then more Kegels.

If that isn't helping, (meaning seeing some improvement fairly quickly) I would ask my surgeon to prescribe formal PT.

Best of Luck to you !

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@tomf

I had Ralp 6 months ago and also felt cheated when I wasn't continent in three weeks, thanks to watching those guys on YouTube. But I am almost there now and have high hopes for being very dry all day soon. From the start, sitting and lying down were easy, I rarely leaked. Every time I stood up, I used my kegels to get me to the bathroom to void. I am still that way at night, getting up once or twice a night to empty my bladder just in case. In the daytime at the start, I went from thick pads (in my depends in case of oversaturation), one in the morning, one in the afternoon, and then just the empty (and hopefully dry) depends in the evening. Now I don't need the depends at all, but still use pads in my underwear. One thick pad will last all day if I'm just doing normal things. If I work out (like 2 hours of pickleball) that requires its own thick pad. If I play 18 holes of golf, and hang out with my foursome, that can last over 5 hours. For that I have taken to an external catheter which straps to my leg and is hidden under my shorts. I drain it at the turn and it works out very well so far. I do the kegels and have far more control now than I used to have. The nurse said one day it will just magically happen. I don't know about that but it is improving. One caution- a friend who had this several years ago still puts a light pad in his underwear for that unexpected cough or sneeze which still makes him release a little urine.

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very helpful and thanks for writing with such detail.

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Thanks for your input - very helpful and sincerely encouraging.

Gary

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I'm 10 days after RALP, No incontinence at night, although I wake up 2-3 times a night and pee to be safe. While sitting during the day, have some incontinence, as soon as I stand up I go straight to the bathroom or I will pis myself. Before my surgery did keagles for 6 months and advanced pelvic floor exercises for 2 months. Currently doing my Keagles 3 times a day. Holding off on the more advanced pelvic floor work for a while, don't want to pull anything loose. Good luck,

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I'm now 16 weeks post RALP, catheter came out 6 days after surgery. I think my bladder recovery has been average, from what I've read. For the first two weeks after cath removal, I was changing pads 3 times a day, going from #4 Poise pads to #3 during that time. Weighing the pads, I had ~80 ml urine loss/24 hours, more in the evenings than at other times. Over the next three weeks, I dropped to ~ 15 ml/day using the #2 pad. I stayed at that level for about a month. I had steadily improving continence, going from sudden unexpected loss to only losing it when I performed an awkward maneuver. By 12 weeks/3 months, I was down to less than 5 ml loss per day, using only one #1 pad. Now, I still wear the pad, but have no urine loss. So the curve of daily urine loss would look like a classic parabola, starting up high and decreasing at a slower and slower rate over 3-4 months, eventually getting to zero.

Details about me which might be relevant: 74 y/o, normal weight (BMI 22), very fit due to 20 + years doing triathlons (life-long swimmer/biker). I started very aggressive Kegel's PT 4 weeks before surgery, along with increasing swim/bike/running to be as fit as possible going into recovery. Coming out, I gradually decreased the amount of Kegel's done daily, to the point where now I do them once a day, five times a week. I'm doing 10 mild squeezes held for 12 seconds each, that takes 3-4 minutes. Then 12 very hard, short pulls, that takes about a minute.

I suspect in addition to one's level of pre-op muscular fitness and endurance, and body mass, the amount of bladder tissue removed directly above the prostate must also be important. That's something which is difficult to quantify, even for the surgeon doing the procedure. And certainly it's not something which we patients can compare with each other. For those who take longer for full continence to return, I suspect a large part of that has to do with the character of the surgery more than anything else. It is certainly not a moral failing on our part...

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@philipbrachko

I'm 10 days after RALP, No incontinence at night, although I wake up 2-3 times a night and pee to be safe. While sitting during the day, have some incontinence, as soon as I stand up I go straight to the bathroom or I will pis myself. Before my surgery did keagles for 6 months and advanced pelvic floor exercises for 2 months. Currently doing my Keagles 3 times a day. Holding off on the more advanced pelvic floor work for a while, don't want to pull anything loose. Good luck,

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That sounds normal for the first week after cath removal. Don't let the leakage deter you from walking 30-60 minutes at a time every day. Just wear a good pad.

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I am walking and even dinner and a movie with my wife. It is just humbling enough to have the surgery but then to be incontinent is another hit. I know it will pass and appreciate everyone's input and experiences! Thank you

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