Another incontinence questions, looking for similar experiences

Hi - we’re on sort of similar paths. I’m 59, had my RP in January, some lymph nodes and some nerves removed as well. I’m also working with a pelvic floor therapist who specializes in treating men.

I saw no improvement whatsoever for two months, then my overnights got better. I used to get up every two hours and as soon as I’d stand, Niagara Falls in my underpants.

Now, I can generally go 3-4 hours, walk to the bathroom to pee, and the guard I wear at night is generally dry, just some spotting.

Daytime…not so much. I’ll still have the gush every once in a while upon standing, but usually, it’s more like a less urgent steady stream. About half the time, I can make it to the bathroom. I do get a lot more drips, dribbles, and squirts during the day - so daytime is better, but not great.

According to my cancer care team and my therapist, my case (and by extension, I’d say, your case) aren’t unusual. My main nurse told me initially not to expect any improvement at all for 2-3 months, then I’d see improvement overnight first, then eventually during the day.

I’ve also been told progress can plateau, which is where I’m at now, it seems, and then get better.

Lastly, from what they’re telling me and what I’ve read on my own, recovery is very individualized. The most common thing I see/hear is that improvement typically starts in the 3-6 month range and gets progressively better out to 18 months or so, and where you’re at at the 18-month point is probably as good as it’ll get. If you’re 90% continent by then, and just dripping a little when you laugh or cough, that’s considered a pretty good recovery.

I’m just taking it one day at a time, doing my exercises (three times a day) and following all the advice I get from my care team.

Good luck, hang in there!

@turtbean

Thanks! It does sound like we're in very similar situations. I'm just frustrated because I don't see ANY daytime improvement. I'm wondering if I'm overdoing the exercises or the kegel contractions. I really appreciate you taking the time to write to me.

@zintis
You can overdo Kegel exercises. I was in a meeting yesterday and one guy was saying he does 80 of them every day. Another guy said he went to a physical therapist that specializes in incontinence problems and they told them don’t do too many, Two or three sets every day is all you should do otherwise you tire out the muscle.

Just something to think about.

Yes, you can definitely tire out the PF muscles - if you’re finding you’re having trouble engaging them out holding them, that’s an indication you’re overworking them. In that respect, they’re just like any other muscle.

I swear by my PT person. I was just trying to follow YT videos on my own, but like everything else, it’s easy to get overwhelmed with the amount of information out there, and some of it is contradictory or counterintuitive, and I’m one of those people who always seems to ask, “Yeah, but what about…,” so videos aren’t always great for me - I like instant confirmation/validation from an expert.

80 is at the top end of what my care team at the cancer center recommends. They say 30-80 a day. That’s just your standard kegel, holding each one for 10 seconds.

What I like about the PT stuff is that it contains kegels executed from a variety of positions and while performing other motions (like squats, stepping up, leg lifts), and also includes non-kegel exercises to work on my core - the muscles that help my PF muscles. It treats more of the whole system, I guess.

@jeffmarc This happened to us too - 7 weeks out from RP. He is already down from 4 pads a day to 2 pads a day- but standing up - !!!! Still a problem.
He finally saw a specialist last week who told him that he was doing WAY too many kegels (also not isolating the muscles correctly).
Time will tell - it is hard not to push for faster recovery - Good luck to all dealing with this.

Another good thing about a specialist…they’ll likely have all the tools needed to properly gauge what you’re doing right and what you’re doing not so right.

Ultrasound, air pillows, even insertable probes that can measure and/or stimulate PF muscles and help you make the most of your exercises.

I had NS surgery feb 2020 at 68. I got up about 4 times a night to pee but no leakage at night. During the day was a constant flow. At about 6-7 months I started to feel the urge to pee if I sat for any amount of time and stored it up. I have done kegels since before surgery. I go to the gym every day and do core exercises. I had testing done at Mayo at 5 years and everything looked ok. I have an over-active bladder. I just finished 6 months PT at Mayo working on kegels. Everything looks good and yet still no control. Mayo urologist has suggested an AUS. I hate to think of another surgery. I guess my answer is, it might not get better. For some of us, it goes with the condition.

Hi,
At a few months out you still have a lot of healing to do. It took me about a year to heal(stop getting better) with gradual improvement along the way. Keep up with the PT as with time you should get better. I still drip a drop or two 11 yrs later when I walk long distances, strain or twist a certain way but a small depends pad takes care of it.

Has anyone benefited with overactive bladder medicines?

I am six mo post RARP. Fairly continent, have decent control. Still dribble a bit during significant physical exertion, and leak if on a good roll with alcohol. Have switched from boxers to briefs, as they absorb a little better and work much better with the pads I still wear if out for a big social event.