Prostatectomy And Incontinence: When can I expect it to improve?

You are very early in your recovery and your pelvic floor muscles experienced a fair amount of trauma during the surgery. As a result, it is common to have incontinence this early in the recovery stage. As your body recovers continue with kegels, ensuring they are properly done, and your overall physical fitness. You should expect improvement in the 9-12 week timeframe and then further improvement thereafter. As others have written, if you do not begin to experience improvement, there are many available options.

I am in the exact same situation, 2 wks. Post surgery. Just joined but read a lot of comments prior. I felt I'm on an island but after reading some the posts I, we aren't much different than others. Physicians suck a providing expectations and I thought I would have leakage but not at the incidence/rate I'm experiencing. No way that incontinence briefs can hold my nighty pee. I wear briefs at night and a baby diaper also next to my skin. Ran through a bunch of the grandsons young age(20# maybe) and work well. Blow through those and tried left over new borns and that was a disaster due to not enough holding capacity. This crap suck but thank you all for posting previous comments whereas it gives me hope in my highly impatient mind set.

@kcman1960
You really need to look into an AUS (Artificial urinary sphincter).

I had one put in in June and activated in July and I am pretty much 100% continent after six years ago having to wear black pants and worrying about how much I would leak.

I do have to press a button in my scrotum to pee, but it’s better than always having to worry.

If you haven’t had radiation, then the ProACT Is even a better option.

You don’t have to live with this problem. It is resolvable.

@kcman1960
You are very early in your recovery and with kegels and pelvic floor exercises your incontinence can improve dramatically over time. Only about 10% of men are fully continent first day after cath. is removed. If your surgeon did not give you instructions for exercise (that should start even before surgery) ask him to at least give you now referral for PT. In the meantime you can start doing at least Kegel exercises - go into history here and you will find bunch of links and book that cover this problem.

About 95% of post RP patient regain full continence by year 1. About 1/3 by 4 mos. My husband was in this category - he became fully continent at 4 mos.

Also, baby diapers are not designed for full grown man and you should buy Depends or Tena products designed for man incontinence. I am really worried with the fact that your surgeon did not give you even instructions about available products in pre op consultations (???) . I hope you had your surgery with experienced surgeon (with over couple of thousand RP surgeries) and at the big cancer center of excellence.

Wishing you all the best and keep in mind that resolving continence is "long game" and requires very specific exercises.

@kcman1960 - at two weeks post-surgery, you’re very early in your recovery. While some very few are lucky to be immediately continent (or close to it), most of us require a period of many months of gradual improvement to get there.

I’m seven months past having my catheter out after surgery. As long as I avoid the usual bladder irritants (caffeine, alcohol, carbonated drinks, among other things), I’m right at the moderate-to-severe stage of incontinence, because I leak anywhere from 40ml-110ml a day. It just depends on the day.

Someone posted on here earlier that 60% of men get their bladder control back at 6 months, 90% at 10 months, and 98% by 18 months. You’ve got a little bit of a road ahead of you most likely, so let’s talk about what you can do.

First, your frame of mind. You’re incontinent, probably very much so. Every time you move, it’s squirt squirt drip drip squirt. Every time you stand up, it probably feels like a firehose on full blast in your pants.

This is normal, and it’s best to accept it and get used to it and develop strategies around it so you can have a fairly normal life over the next several months. Forget the panic and forget the frustration. It does no good.

So, if you’re not already doing some kegel exercises, start those. There are tons of videos on YT. Just start slow and learn the basic movements, retracting your penis and tightening your anus…hold that for 3-5 seconds, pause, then again. Do a couple of sets of 10 in the morning and again in the evening. Work on building up to holding them for 5-7 seconds…then 10 seconds. Don't overdo it, as you can tire those muscles out and make things worse. Aim for 60 or so kegels a day.

Get a referral for pelvic floor physical therapy and get that set up as soon as possible - they’ll work with you to teach you advanced kegels and help you learn to maximize your exercises to get the most out of them. These folks are professionals and are unsung heroes, IMO. They’re there, so use them.

Protective undergarments: the baby diapers you’ve tried, those aren’t going to work. I don’t even know how they would work, honestly. My care team had me start with adult men’s pull-ups with a heavy-duty pad inserted. Pads are less expensive than pull-ups, so it helps extend those.

Initially, I was going through 12-15 pads a day, and a pull-up, so yeah, I was leaking a lot, in part because they want you drinking a lot of water initially to help flush and heal your bladder and urethra. My care team had me drinking 4-6 bottles of water a day the first couple months.

Over time, as I improved, I was able to leave the pull-ups behind and wear heavy pads in my boxer briefs. That took about three months to get to. Nowadays, I’m at two medium pads and a thin shield a day, and I feel another reduction happening soon, as I continue to improve.

Nighttime - I did exactly what I did during the day, heavy pad in a pull-up. I was initially getting up 5-6 times a night for a pee and pad change, and just like the daytime, as soon as I’d begin to stand up from the side of the bed…WHOOSH!…my bladder would forcefully empty, filling my pad. Quick change to a new pad, then back to bed for another 30 minutes of sleep, hopefully.

That continued for about two months. That was the hardest part of all of this, because for two months, I really didn’t get any quality sleep. Then, right at the two-month point, I got up to pee, and…no WHOOSH when I stood up, just some dripping. I was able to walk to the bathroom and pee in the toilet. Huzzah!

That took two months, though. Two months of having a penis that was at best a leaky faucet and at worst a raging waterfall, and everything in between. Two months of constant dripping, squirting, oozing, and forcefully leaking out urine in my pants.

Every week or so was a little better after that. I began to whoosh less during the mornings, then the entire day, no more whooshing when I got out of the car, I got to where I could make a shopping trip on one pad.

What you can do in the meantime is keep a good supply of pull-ups and pads at home (I used Depends pull-ups and generic brand pads) and make sure you have a small bag or backpack you can take with you when you go out, stocked with a few pull-ups, a few pads, some small trash bags, and some baby wipes in there. Get out of the car…WHOOSH!…grab a pad, trash bag, and baby wipe, and go straight into the restroom, into a stall, and do a quick-change. Before long, you’ll have that down to 90 seconds or less. Continue on with your shopping, or your restaurant meal, or whatever.

Do your kegels religiously, cut out all the bladder irritants, and I’d even recommend weighing your pads so you can definitively track progress. It does a world of good to be able to see improvement reflected in cold, hard numbers instead of simply thinking, “I’m still peeing in my pants! This is never gonna get better!”

Patience, diligence, and sticktoitiveness are what’ll get you through this. It just takes time, but you can make it easier on yourself with the right state of mind, the right plan, and the right supplies.

@kcman1960
I know I talked about the AUS, But you are definitely not in need of that yet, It’s just something you should keep in your back pocket in case everything doesn’t work like normal.

A pelvic floor physical therapist may be able to get you right back to normal. As other say, most people do get back to normal within a a year at the most.

You just need to follow the instructions of a PT and try to rebuild the strength of the sphincter that’s still in your body.

check out https://www.auajournals.org/doi/10.1097/JU.0000000000000314

among other things

3. Clinicians should inform patients undergoing radical prostatectomy that incontinence is expected in the short-term and generally improves to near baseline by 12 months after surgery, but may persist and require treatment. (Strong Recommendation; Evidence Level: Grade A)

6. In patients who have undergone radical prostatectomy, clinicians should offer pelvic floor muscle exercises or pelvic floor muscle training in the immediate post-operative period

9. Clinicians should evaluate patients with incontinence after prostate treatment with history, physical exam, and appropriate diagnostic modalities to categorize type and severity of incontinence and degree of bother

2. Patients with incontinence after prostate treatment should be informed of management options for their incontinence, including surgical and non-surgical options.

Before my surgery I was told incontinence would last about 6 months. I'm now at 21 months and leaks are a fact of life for me. Cough, sneeze, exercise too much and boom. My surgery was a little more extensive than what I've heard from others, and I had 39 radiation treatments at 13 months that seemed to set me back a bit.

I was given a medication for incontinence, but United Healthcare denied it and they gave me something else - tolterodine tartrate - that doesn't seem to work as well. I had physical therapy but that was done by phone because the therapist office was in Chicago.

My cancer is undetectable from Gleason 9, so I'm happy to be disease free for however long that lasts. I've looked at the incontinence as the price of not having active cancer. I'd prefer not to wear a pad every damn day but if that's the tradeoff, I'll accept it.

@edinmaryland
They should also Go over the ED problems, And discussed nerve sparing.

1. The need to use a penis pump after surgery to keep the tissue alive.

2. A prescription for Cialis to try to keep the blood flowing.

3. The possibility of using injections like bimix and Trimix.

4. The ability to have an implant put in so an erection can be possible at the press of a button.

@anosmic1
You don’t have to accept it. You can get an AUS put in and if you haven’t had radiation, you could use a ProACT device.

They changed me from multiple pads too complete continence After six years of leaking.