Newbie Questions; Incontinence Mostly

Hi everybody,

Just found is forum today. I've done enough reading here to convince me that this is the crowd that can speak from experience, and perhaps answer some questions I have about this whole process. So thanks in advance for any insights you can give.

First, a little background: I'm 51 years old. I was diagnosed with prostate cancer in January. PSA 4.9, biopsy came up with Gleason 6, with cancer in four of 12 samples, two each side. Each sample had about 80-90% cancer, so low risk, but high volume. Anyway, I had the prostate removed October 20th, non-robotically at the University of Colorado Anschutz Cancer Center. I had the catheter removed yesterday (October 30th) 10 days after the surgery.

So far, I've had a lot of leakage during the day, going through five diapers (Depends maximum absorbency) each day. I had no leakage at all last night, which was my first night. We will see what happens tonight. My questions below all relate to the leakage and controlling it moving forward.

1. I've been doing Kegel exercises, but wonder if I'm overdoing it; last night, I found that those muscles were a bit sore, and are a bit more so today. I've been doing them about eight times a day. My routine consists of holding for 10 or 15 seconds, then releasing for ten seconds; ten reps of that then ten quick squeezes and releases to finish off. Again, repeating this sequence about eight times a day. Should I back off a bit?

2. Should I be trying to hold back my urine when I start to leak? I usually don't get any feeling of needing to pee; my first indication is a wet feeling as it starts to flow into the diaper. I try to squeeze it off, but not sure it's working, as I continue to get a wet feeling. Usually, by the time I get to a bathroom and try to pee, nothing comes out. Occasionally, I do get what feels sort of like a normal urge, and I squeeze, go to the bathroom and release, and do get a sort of normal flow, but that's the exception, not the rule. So should I try to squeeze off these spontaneous leaks, or just let them go?

3. In general, when everything is working correctly, are we constantly squeezing a little bit, so at we are not just peeing all the time, or is something else at work? I'm asking about both normal folks who've never had a problem, as well as folks who have had their prostate removed. Just not sure I understand the mechanism well enough. In my case, should I be squeezing a little bit all the time, or just relaxed most of the time, and squeezing when I need to stop a flow?

4. Interestingly, when I am peeing into the toilet, I can easily squeeze off the flow at will, and have always been able to do so (all my life). So I think I have strong pelvic floor muscles. Is there is some I else I need to work on?

5. Even prior to the surgery, I've had very minor drip issues for years. It was limited to right after peeing; after pulling up my pants, I'd always get a few drops coming out. Never at any other time. It always seemed like my urethra wasn't emptying completely. Years ago, I took to trying to get these last bits out after a urination by running a finger along my urethra from my pereneum to the tip of my penis to push out a fair bit of fluid. I'm still doing that. Is this a bad idea for some reason?

6. I'm trying to get as much mileage as I can out of the diapers, but as they get fuller, it becomes uncomfortable to sit, especially in a car, as the fullish diaper puts pressure on my pereneum area. Is a little of this discomfort no big deal, or should I avoid putting pressure there at all costs?

I realize that I am very early in the recovery process. Other than the leakage, it's actually going very well. I have always been a fast healer, which is great, but it has the downside of making me impatient with long-term recovery, such as this leakage might require.

I also know that these are all excellent questions for my urologist. Unfortunately, he and his team are very busy, and hard to get in touch wi for non-critical questions such as this. And I don't want to bug me too much. I will ask a lot of these at my post-op appointment on November 9th. Honestly, I also really appreciate the insight of people who have personally gone through it.

Thanks so much.

I know this is super-long. If you've read this far, I really appreciate you hanging in there with me, and I appreciate any insights.

Thanks Pratoman,

Good insights, and really nice to have a sounding board.

I'll back off a bit on the Kegels. So five second rests, even if I'm doing 10 seconds holds?

Ok, I'll treat myself to more diapers. I'm originally from northern New England, so it's tough for me to throw out something that's only partly used ;).

I won't get the pathology report until another week or so. I'll post what they find. I'm expecting it to most likely be good, but prepared for anything.

Good idea on the scale; I'll pick one up tomorrow if I can. I'm a spreadsheet geek, so I'll actually enjoy that process.

I'll work on building up my patience along with my pelvic floor muscles, as it's a weak point for me ;).

Thanks Andrew,

I will do my best to give myself time. I did plan the timing of this so as to have the best possible chance to be able to get back to work on schedule. My primary work is seasonal, so I have until April before that comes around. My secondary work is ongoing, but occasional, so low-pressure. I'm hoping t be back at that in a month, but can manage if not.

Andrewski, welcome to our club. I found that I needed thick pads for the first 2 weeks or so, then I used the depends 'shields' for another few weeks. I hear you on the drip issue. I dripped some before surgery, and I drip some afterwards. The drippage rate is probably about the same, but the timing is more random.

After I went on daily cialis, my drippage slowed way down and is almost gone. Something about blood supply down there.

Let us know how you progress. And let us know when "little Andrewski" wakes up.

Well, I can report some progress, although I do realize that there will be downs as well as ups day-to-day. Some of the neurological stuff seems to be coming back; I'm getting definite urges to pee now, allowing me to get to a toilet and actually get a good, definitive voiding there, instead of the near-constant loss into the diaper with no warning. That said, it is sending me to the toilet about every ten minutes or so at times ;).

I'm finding myself doing my Kegel exercises on the toilet, as doing them gets me dripping, and it's cleaner this way. Is it a bad idea to do them sitting, as I have been? It is better to be standing for those exercises?

Reading on this forum, it seems common for guys to have little or no leakage at night, even if they leak a lot during the day. That's been my experience as well. Anyone know why? Is it just the gravity thing?

If you want to get more mileage from your Depends, most of us used a pad inside the Depends underwear. The pads cost about 28 cents each. When they get full toss them and put a new one in. The larger Depends help catch anything that over flows out of the pads. I would only use one Depends underwear a day and go through several pads a day.

I used to put a pad in a plastic sandwich bag and switch out the wet pad for the new one then throw away the wet pad away in the sandwich bag.

I threw many a pad away at Disney World because my surgeon was 10 minutes from Disney. I would go to Disney World after a doctor's visit.

Bill from Florida

Andrewski, Each day is a learning experience. My RALP was two months ago and I sit and do kegals like you, and hold them. I have a tendency to retain urine and find that patience helps with a more complete emptying. I hate going and then returning in 15 minutes. I am only using guards outside of the house now. I still have points when I will leak, but just weaking boxer briefs at home makes me more conscious of a drop. When I stand, from my recliner, I know that's a drip risk. I do it slowly and kegal then. For me, that helps. I can see progess and you will too.

Paul