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

I mentioned that I started weighing my pads a month ago, to get a better feel for how much I’m going in my pants versus outside my pants.

What I’ve learned so far is that I can have daily totals that are all over the place - some as high as the low 700’s, some as low as under 200 (in a 24-hour period).

That was making it difficult to get a read on whether I was improving or not, so now I’m tracking weekly averages, and when I do that, I can see a definite steady downward trend, week-to-week.

Yes...thanks. To add: The "drink 8 ounces immediately after urinating" was/is more about making sure that I remain hydrated. As you mention, the bladder can shrink...in fact that is a normal part of aging per my PFPT Therapist (I never knew that). But also, the PFPT Therapist wanted me to urinate every two hours whether I thought that I needed to or not. It was a preventative move to keep me from letting my bladder get too full and, in its weakened retention state, leak uncontrollably. So, it was urinate every two hours to help avoid "flooding" a diaper or pad, and replace that liquid immediately with 8 ounces to stay hydrated, and to keep things flowing... just in smaller quantities each time, I guess. I rather quickly transitioned from wearing and carrying extra "pads" in my pockets for quick changes in public restrooms (mall, restaurants, etc.), to suddenly only needing thin "Shields". I now carry 2 Shields in my pocket (stealth...no bulge or show in my pocket), and I rarely need to change one. I can go out several hours...4-8 hours, and do not need to change the pad, partly because of my new habit of urinating every two hours whether it is a lot or just low volume dribbles. That keeps me from having bigger accidents.
BTW - I stopped doing the Kegel exercises months ago. I just got bored with them...and very frustrated. There are VASTLY more Kegel-type exercises that the PFPT Therapist teaches, than you will find doing an online search for Kegel's. The PFPT explained how from your diaphragm to your crotch (your entire abdomen) is one big "tank" that is influenced by every breath that you take., and the changing pressures applied to your bladder. The PFPT Therapist teaches you how to breathe certain ways during your Kegel-type exercises. She got quite frustrated with me, and so did I, in that I was breathing backwards or "holding" my breath. What you are taught is contrary to what seems to be the natural way that your body wants to breathe while doing those exercises. She would shout "BREATHE!" or "YOU'RE HOLDING YOUR BREATH!" or "NO, EXHALE, DON'T INHALE!". I am a natural athlete - have been all my life - and I could do anything any coach showed me or told me to do, but this breathing the opposite way of nature during my Kegel's was a really frustrating experience. I was ultimately scheduled for eight sessions, and I was so exasperated that I never went to the last one...I had made no progress after session five...I just kept breathing backward or held my breath. Ultimately, I did improve though...I did make progress during the first five - or all seven - sessions.

13 years post prostatectomy. Still leaking and it’s getting worse.

Thanks to Mayo Clinic and families like all of you are as important as the medical team.

Thanks to all of you that have replied in this string! Had RP 2 weeks ago. Cancer only showed within the prostate. I'm. 77 in good health and weight. My medical team is very good. Doc said removal went great. He's a pro and has been doing these for years. My first surgery ever! I'm very bless!
My questions/problems starts at this point. Anyone I talked to in the doctor's office just said, don't be impatient the incontinence will get better and stop... just give it time! NO post surgery recommendations about PT, Kegel, food/water intake, zip! FYI... 2 weeks and have not got a call on biopsy results.
This is a medical system wide issue. Ran into similar situations with my 1st wife mutiple cancers, and my 2nd partners breast cancer. Great at the front end of treatment, not so good as the door hits your butt on the way out!!! Over worked/understaffed medical system? So support groups like this are invaluable! Knowledge is power.
I will take all the advice/suggestion and soldier on. Thanks!
Any of you had similiar experiences?

@midwestjulyguy - I would say I had some similarities, but that isn’t to say I saw things as negative on their part.

A couple of the nurses did give me generalized (and sometimes contradictory) recommendations on aftercare with respect to incontinence, but nothing written down, just passed along face-to-face. The more I asked, the more I got, and I think sometimes we all expect the staff to relay everything under the sun with respect to mitigating side effects, but I don’t think that’s always practical.

I go to a COE, and one thing they did was simply refer me to their YT channel, with many videos on kegels, nutrition, exercise, ED, etc. I’m sure they felt that was enough (although they did put me in touch with a local PFPT for PT closer to home).

The pathology after surgery…I waited three weeks (and a few days) for the report to post to my portal, and another few days to have my appointment with the doc to go over it. I know everyone is anxious to learn everything about their cancer as soon as possible, but I didn’t think that was unreasonable at all. That’s what I mean by similar but not negative.

I’m not a details person, so when the surgeon went over my pathology, he didn’t break it down a whole lot, and that was fine with me. He just gave me the highlights: negative margins, negative lymph nodes, negative nerves, follow up with PSA every three months for two years.

I was fine with that level of specificity, and now I go back every so often when I read or learn about something here and peruse my report at my speed. If he’d have told me everything all at once…in one ear and out the other with me. I wouldn’t have retained 90% of it.

Good luck on your pathology report and your follow-up!

Short answer 4-5 months of diminishing leakage. I quit wearing a shield after 5 months. Would have the occasional drip but just didn't worry about it. Pro tip, wear black shorts and pants as spotting doesn't show. Radiation undid all of that good post RP work. Slowly getting it back 15 months later. The bladder neck is kind of like a whip cream nozzle. If I sit on something hard like a bolder or hard chair it tends to squirt. With this disease I am constantly learning the "new me". Carry on!

@turtbean

The doctor is setting the dates the pathology is going to be available.... it came in today on My Patient Chart. Left a message for him to call me because from what I can tell they didn't get all of it! Now 8:30 pm... hope he calls tomorrow. He initially told me it would be ready in 5 days. Guess not, it took 13!

Im still incontinent after 20 years. I did have the male sling installed back in 2010. It did slow things down a bit , but I still need a medium sized pad every day .

There’s hope. Others say Kegel exercises don’t do any good but I think they helped me. I’m eight months out and just realized that I no longer need the guards. Been protection free for a few weeks now.

I downloaded an app called Squeezy. It prompts me to do the exercises three times a day.

I also think that stronger pelvic floor muscles have resulted in stronger orgasms!

I was about 4-5 months after RALP still using thick pads and I was told I was not doing kegels enough or consistently. I set my phone to remind me every 3 hours from that point on and I think that’s what helped me at late 5 month early 6 month I was prob 90% continent. Ay 8 months had radiation. At 10 months now I wear a thin pad really just for insurance. No accident overnight but there is an urgency sometimes during the day and if I can’t get to the bathroom right away there can be some leakage. I think the times reminders to do kegels helped me strengthen everything.