Post Surgery Incontinence

The exercise helped me a great deal . It’s a process though, don’t expect too much too soon. Try to be patient.

I’m 2 years post surgery + and was just noticing that I’m still improving.

The smell, I think I became hypersensitive to it, I was self conscious about it as well. My wife said she couldn’t smell it most of the time (maybe she was just being polite).

Between the dealing with the bags, cleaning, being careful with positioning, we’re very conscious of the bag and it gets in your head a little bit. I’d try to not worry about it. I think I read one poster say he sprinkled a little baking soda or powder in his underwear.

Hang in there!

@web265
Thank you.

I drank (and continue to drink) a lot of water, to the point where my urine is at best very pale yellow, and sometimes almost clear, and that helps with the odor, I think. My urine tends to have very little odor, if any, so make sure you’re drinking enough fluids.

My problem was/is more about the dampness and stickiness associated with it. I use a lot of wash cloths and baby wipes and all that, but part of the problem is that even after cleaning myself, I can’t really let my privates air out, so to speak, but I just do my best with washing and drying.

The exercises are a big help, IMO. Be aware that the way improvement can happen (and frequently does happen, according to my care team) is sort of like an on/off switch - one day, you’re leaking like the devil every time you stand up, and then, for no apparent reason, the next day, you’re not.

Don’t get me wrong, a lot of my improvement has been gradual, and a two steps forward, one step back kind of thing, but I’ve also had those moments where something just clicked one day and I was much improved all at once.

I noticed my first significant improvement at two months - I went from a full release each time I got up to go pee overnight to being able to hold it and pee in the toilet. That was one of those things that just clicked and was instantaneous. One night it was a problem, the next night, it wasn’t.

My care team said that’s the usual progression, you’ll see your first improvements overnight, then your mornings will be a little better, then you’ll be a little better into the afternoon, then into the evening, and so forth.

Right now, seven months after my surgery, I’m completely dry overnight, and I can make it all the way to 1PM on just the thinnest shield, leaking around 10ml during that time. My average daily leaking overall is around 100ml.

@turtbean I appreciate these details over time as I approach the treatment decision. It looks more like DaVinci RP. I am 68, T2, PSA 10.8, bilateral cancer, no IDC all contained they think. I have already bought Depends pull ups and wonder about sizing; it smaller better or a slightly bigger size pull up is better? 2+ months out from treatment, I am doing Kegal exercises and walking 1.0 hour per day, with some light weight training. Fingers crossed

@johnnyz - my own opinion is that a bit bigger size is better for comfort, but worse for allowing leaks to escape out to your pants. Ones that fit more snugly hold everything in place better.

Keep in mind, if you’re like most folks, you’ll have a pad in there as well, so you need to allow a little room for that. I’m 5’9”, 175 lbs, and I wore Depends size L pull-ups with a heavy Kroger pad/guard, and that worked well for me. By the time I was ready to move to medium-weight pads/guards, I no longer needed the pull-ups - my leaking was such that I could wear the pads/guards in my boxer briefs with confidence.

I currently wear size L boxer briefs with a Depends shield in the mornings and a medium-weight Tena pad/guard for the rest of the day. I did buy some size M boxer briefs, and I do wear them, but they’re really, really tight. They’re fine in groin, very snug, but the waistband is a killer, as well as the leg openings.

My situation and improvements are similar to Turtbean. I am 10 months out from DiVinci RARP. As he and others said, Kegels have helped with improvements. Walking, to include while I had the catheter in, seemed to help as well with pain. Cleaning all the catheter parts and myself with wipes at each bag change was a must for both cleanliness and to lessen smell and infection worries. As others said, my wife said she could never smell anything bad. This is true after catheter removal and during heavier pad use as well. I used an aloe infused cleaning wipe each time I went to the bathroom and made sure I changed the pad before it became too full. Also carried the individually wrapped wipes for use when I was away from the house.

Thank you - helpful tips for sure. I have already bought a pack of Med, and a pack of large with the idea of trying a size on from a 3 pack to determine which works best. I am 5.8", 190 lbs. so it seems the large makes most sense from what I am reading. I was intriqued to learn. about the addition of pads with the pull ups..

I am 21 months post surgery and am 79. My incontinence has not gotten better but I live on Depends and some pads I get from my insurance. I wear 1 depends at night and 1 during the day. The pad is for when I am going out and want extra protection. I did 40 sessions of Kegel exercises and that helped but I have both urge and stress incontinence. The voiding ranges between 30 and 200 ML in a 12 hour period. Three months ago I had the SNS implant but that has proven to be no help even after having good success during the test run. I’ve asked my doctor to schedule me for an AUS. 21 months of always being wet and living near a bathroom is taking a toll. Best wishes.

I had the DaVinci surgery back in 2015. Kegels never did me much good, or maybe they made the incontinence “less bad”. Never got better than 1-2 pads per day. From the get go, my urologist said that he could do a urethral sling surgery to fix the incontinence. It was my call as to when. It’s a simple outpatient surgery, but in 2015 I had both the RARP and a double hernia surgery and really wasn’t enthusiastic about another surgery. Finally, in 2023 I went for the sling surgery. Total success, and from that day forward I have never used pads again.

Last fall I underwent radition therapy for a local recurrence. My urologist warned me that I would loose some continence, even with the sling in place. So far that hasn’t happened. The urge to go comes on a little stronger perhaps, but I still do not wear pads.

So, take heart, if your incontinence persists, especially as stress incontinence (1-2 pads per day), there are solutions, including the urethral sling. My only regret is that I didn’t do the surgery sooner.

You should have started with exercises before surgery but it is definitely not late to start them very soon after. You need to do Kegel and pelvic floor exercises. There are many books and many videos of how to do them but if you never exercised in general perhaps PT sessions would be beneficial.
My husband regained full continence about 4 mos post surgery - he was very diligent with doing Kegels and pelvic floor exercises and also walked about 3 miles fast pace every morning.

In regard to urine smell - it should not smell bad. If you are well hydrated and have no infection odor should be minimal, if any. Some heavy food can cause odor too, like a lot of onion, garlic, asparagus etc. Perhaps stay away from meals that are too spicy - they will irritate your bladder anyways. Change pads often too ! No need to wait for them to fill up. My husband changed them regularly no matter how much urine was in or not.

Wishing you very fast recovery and full continence in very near future 🍀