Incontinence is making me crazy-2 months post-surgery

New member here who has read a lot of the posts and done some research. I am so envious of those who say they are continent soon after surgery. I had DaVinci two months ago. I shouldn't really gripe, as the pathology looks very good for complete removal of any cancer. On the other hand, I returned to work 3 weeks ago, as an elementary teacher. I am up and down a LOT and it's always bad when I rise from a sitting position.
FYI, I'm using anywhere from 6-12 pads per day. And no, I'm not changing when there are a few drops-they're pretty wet when changed. My surgeon, a practitioner of "factory medicine" won't even discuss this until 3 months. My regular urologist is seeing me next week. I guess what I'm looking for is some assurance that there are others who have had a lot of problems at the beginning that did resolve before a sling or AUS was necessary.
As I'm writing, I had to bend down for a student and felt that warm, wet feeling again. This really is affecting my psychological state and I'd appreciate any thoughts, even if they are not reassuring. Thank you in advance. I've learned a ton on this board.

Welcome to HW.

It took me five months to move from a Depends pant and eight+ pads a day down to one pad a day, then I did adjuvant RT, and started back up.

You might look at the thread today from 10drum, who seems pretty much in the same boat as the rest of us.

shame for your experience. My experience with my "factory" surgeon was nothing like that. 28 months out we still share emails.

That's really good advice. I do wear a Depends diaper with a Depends (do I get green stamps for that?) pad inside at bedtime. I find that more and more at school I'm getting a leak into the side of my jockey shorts outside the pad. The Depends combo is a little bulky, but I think I'll give it a try tomorrow.

PeterDisAbelard said...
Hello Donft,


We have lots of guys here who are experts at dealing with incontinence. One trick which I have used, from time to time, was to wear a pair of pull-up incontinence pants (ie. "Depends") with an incontinence pad inside (ie. "Guards"). The pants give you more security but they more expensive and a pain to change in public restrooms. The pads are cheaper and easier to change but they tend to get overwhelmed sometimes. Wearing the pull-ups as a sort of containment vessel and using pads to catch ordinary expected leaks gives convenience and defense-in-depth.

Let us know how we can help.

Don,

Old fart and former teacher here.  I got my diagnosis 8 months after taking early retirement from 33 years of teaching middle school, so I had the advantage of time during the day.  My doctor told me the more you can walk the quicker you will regain urinary control.  I started walking 3 miles a day--even with the catheter and increased it to 5 miles per day after its removal.  The first week I felt like I was literally "pissing my life away", but little by little I saw improvement until I was completely continent at 3 weeks.  The doctor explained that walking by its nature strengthens the pelvic floor.  I know it could be tough working full time, but hopefully as a teacher your school year is winding down.  You are still early in the recovery process so don't lose hope.  I was extremely fortunate to only need pads a few weeks, but I am convinced it was all the walking that did the trick for me.

Best wishes,

Tom

I do walk with my students every morning. I am retiring this year and have about 5 weeks left to go. I will increase the walking, but I'm not optimistic about complete continency anytime soon. I'd settle for 4, 5, even 6 pad days.
Hey, 142 Forum Moderator. Did you ever go through times when pissing on yourself and changing pads all day just got you way down? I take Cymbalta, so it's not a med thing. I just wish I could make the attitude adjustment I know I need. Not as easy as I would like it to be.

Don, my experience tends to bolster what Peter said: the older you are and the larger your prostate was, the longer it takes to regain continence. I'm now 19 months past my daVinci surgery and I still struggle with incontinence. I was a fit, healthy 68 year-old whose prostate had enlarged to almost 80g by the time of my surgery. I feel that's why I'm taking much longer than normal to regain continence.

I did my kegel exercises daily but only slowly went from 8 pads a day down to 2-3 pads now. I was a walker before the surgery - 3-5 miles a day and hoped my fitness would help me recover faster. I re-started my walking a few weeks after the catheter was removed in the expectation that would speed my recovery. Alas, that was a forlorn hope.

My urologist finally referred me to pelvic floor rehabilitation two months ago and I'm starting to see some real progress for the first time. The only time I seem to leak heavily now is when I walk a lot. I asked my physical therapist about it and she told me that walking or running puts a lot of stress on the pelvic floor. She suggested I reduce my walking by half to give my pelvic floor muscles a chance to rest and strengthen. Maybe the heavy-duty walking also contributed to my slower recovery. The reduced walking does seem to help and my therapist has given me some dynamic exercises to do to get me ready for longer walking again in coming months.

Anyway, things do get better if you do your kegels and remain patient. If kegels alone don't get you to recovering continence fast enough, then pelvic floor rehab is also an option. I wish you the best in regaining continence - something most of us took for granted before our surgeries.

Mike

Don,

Congratulations on your impending retirement--I highly recommend it!!  I loved my job, but I am older than my wife--also a teacher--and she can carry the insurance and our district had an early retirement incentive so that between our state retirement system and my incentive I'm bringing home more money now than I was working--no brainer.  I know how physically exhausting teaching can be.  Perhaps three weeks was too soon to return and you're just worn out.  One can definitely over do it, which can contribute to leakage.  I'll wager you see significant improvement once school ends.

Happy retirement,

Tom   

On the weekends I rest up and use about half as many pads as during the week. Probably from being horizontal much of the time.

donft,

I had the open RRP since my cancer was so aggressive and the chances were that it had spread outside the capsule. It took me about six months to regain decent control. I went to Costco to get my depends because someone posted on this website they were so much cheaper, When I was checking out the cashier looked at me and said, "who are these for?". I simple said they were mine and I just had cancer surgery. He didn't say anything else to me. I just had to laugh about it.

As I recall, it took me about three months to start to see profess, I was burning through the depends and pads similar to you. I scheduled an appointment with the Uro around two-three months and he told me to have patients and that insurance would not allow surgery for a year post surgery. At least that is what I recall. My U.O. told me at two months that this was the hardest part for men since most have no control. Boy was he right.

Since I lost my perinueral nurves during surgery, I discussed with the Uro a two for one surgery. He said that he has done the two procedures before but thought I would regain some continence. Well he was right and by six-seven months I didn't need depends, but relied on pads. To this day, I continue to dribble through out the day and stopped wearing light colored pants, kakis, etc. so they show the wetness all too easy.

Hang in there, you truly are at the hardest point in your recovery. You are emotionally drained from the Dx, physically drained from the surgery, and mentally frustrated. It should get better. I am almost 54 and still learning patience!

Sorry that you have had to join this fraternity but glad you have read many posts so far and have learned so much. This is a great site and everyone is so unselfish with their knowledge and experiences.

I remember being where you are. It was about the time I started my biofeedback. When I first met my technician I told her that while my ultimate goal was to be dry I would consider it an improvement if I could walk a mile and then pee in a urinal. Mind you, I wasn't talking about arriving at the urinal dry, I just wanted enough urine remaining in my bladder after the mile walk to manage a decent squirt. When I was finished with training I had to admit that I had obtained that limited goal, although the larger goal of full continence was a long way off.

My recovery has been slowed, I think, by the radiation therapy that followed up my RP to deal with my positive margins. I continue to improve s-l-o-w-l-y and I am not sure where I will wind up when the curve levels off. I've seen research papers about incontinence after RP and the result they presented was that the worst case was to wind up slightly incontinent. Guys who get dry get dry. So they are OK. Guys who never get close to dry get slings or artificial urinary sphincters and they mostly do OK too. It's the guy who almost gets there -- who isn't quite leaky enough to convince himself to get the surgery to fix things -- who winds up with lots of long-term bother. Currently the way my leaking is progressing I am on track to be that guy stuck in the middle. But we'll see.

Like I said, the radiation has affected my recovery and your experience may be different. Lots of guys report that they leak and leak and then, rather suddenly, something adjusts and they get better quickly. I seem to remember several guys mentioning 14 weeks as their 'magic' number.

Kegels do help. So does biofeedback / pelvic floor physical therapy. And be sure to vent frequently here on the forum. We're used to it and it will make you feel batter.

Don, it is a bit soon after surgery, and as the others have said, it can take time, and improvements are usually with small steps. Sounds like you are doing all you can.

Be careful what you wish for, I had the opposite problem. I never had an incontinence problem, because I couldn't pee. I had constant stricture issues, hundreds and hundreds of bladders spasms, etc. I had a total of 6 stricture operations post surgery, and sometimes would seal shut in less than a month's time. I spent a total of 1 1/2 years on 21 different catheters, couldn't keep my bladder neck open. The last time, I spent 51 continuous weeks with a catheter.

If I tried to pee on my own, it would hurt and burn bad, and I would get blocked up fast. In the end, due to severe radiation damage, my bladder was by-passed, and for 3 years, I pee out of a hole in my side (stoma) into a plastic bag. Nothing, comes out of my penis, ever. Just for decoration now, lol. And I get to spend the rest of my life hooking up to a catheter bag at night. So everything is relative.

You should see improvements, be patient, and never give up hope. If I had your problem, I too would be upset, angry, and even humiliated, so I do feel for you.

david in sc

don, your incontinence issues are just as important. it's a horrible side effect to deal with post surgery, and no one knows how they will end up until the surgery is over with. some men are lucky, and are bone dry the day the catheter comes out, and others are still fighting it years later. you seem to be in the middle of the packs, so that tells me you should ultimately do well.

most of us surgery guys think the same way prior to surgery. 1. get cancer out. 2. deal with any incontinence 3. deal with any ED issues. that sequence seems to be the norm for most men

good luck again

david