Incontenece - expectations versus reality

I'm new to the forum and this is my first post.

Divinci Surgery went well on Nov 4th.  Was released the following day without any complications. Pain wasn't bad.  Regular tylenol did the trick after the first week.

Had the cath removed 5 days ago, 1st day after cath removal I went through two depends, used only one pad overnight.  However, the 2nd 3rd and 4th days incontenence got worse.  During the day I soaked numerous depends, leaked like a fountain whenever I got up or changed positions. Night time was the same or worse.  I used several pads and two complete changes during the night.  Last night was even worse yet. Wet, wet wet. Multiple changes, three depends along with numerous pads, up several times and still soaked the bed clothes.

I've been doing keggle exercises but trying not to overdo it.  Was told by Moffitt Dr last week to be patient, it may take 6 weeks to see improvement. I can live with that, but I expected to see even the slightest improvement in 5 days, not things getting worse. Any thoughts?

Anyone else had the problem of things getting worse before they get better?  I'm new to this, any info would help.  thanks in advance.

I think excessive Kegels and muscle fatigue may be the problem. Dr recommended five sets, so I did a five sets the first day after cath removal and it's been downhill since. I notice that after I do a set, I'm flowing like crazy. I don't know what else to do but keep with it, but I am cutting down to three sets a day for the time being.

I'm 6' 195lb offshore fisheman and except for the PC I have been in excellent health with no incontenece or errection problems at all, so I guess my chances of gaining back an acceptable level for both is good. I just need to be patient.

thanks for the info

Each situation is different with regard to urinary continence. When I went for my one month follow-up, my doctor told me that I did not have to do kegels. He explained that that the remaining urinary sphincter which is the one which will ultimately give back control is an involuntary muscle and that the the kegels strengthens a voluntary muscle in the pelvic floor. He did not feel it was necessary to do them. And I have to say, after I stopped doing the kegels at one month, I finally started making noticeable progress. At four months, I am 98 percent there, only having the occasional squirt during the day when I am probably applying tension to my abdominal walls or I have had one too many beverages either containing caffeine or alcohol. Down to one pad a day, and it could really go more, but I change it for sanitary reasons, and no pad at night. Now if only those slow healing nerves would kick in.

Make sure you are flexing the right muscles. I think the best way to "learn" continence is to stand over the toilet and stop and start your urine flow. Do it every time you pee for a while until you really feel what stops and releases your flow. Many men figured this out way too late. Give it a try.

Hello and welcome to HW, Herman.

When you are immediately out of surgery and off the catheter, swelling from the operation may have slowed down the leakage at first. As the swelling goes down, its not uncommon to leak more at first. Hopefully, you will see small gradual improvements, that seems to be the avearge response, but I must say, incontinence can range from none, to severe, so many factors involved.

And sounds like you already know, not to overdo the keagel bit, if you do, you tire out the muscles, and by the end of the day can make your leakage worse. Also, be sure to stay properly hydrated, that is important for your healing and general health, the temptation is to drink less, but that's not really a good ideal. Stay away from coffee, tea, sodas, juices, etc, as much as you can. Plain old water is the best thing to stay hydrated with.

Good luck as you seek to go dry. Please keep us reported on your journey.

david in sc

New member
Had keyhole prostae opp 2.5 years ago. PSA minute now.
But I am still incontinent when hiking/walking, my main hobby
Investigations shows weak muscles due to op. I am doing kegal exercises
Coffee make sit worse, as do many fruits
Alcohol variable in effects
Any advice appreciated

Wet wet wet - Got tired of changing bed clothes in the middle of the night. Even my lttle maltese dog refused to get in my bed and she's been sleeping beside me since she was a pup. I was 21 days post op and things were getting worse, not better. I'd been faithful in doing kegle exercises every day. But I was doing them moderately, maybe even very gingerly, afraid not to hurt anything. I did 10 seconds of contractions, then resting ten seconds, doing sets of 10, three or four sets a day.

I finally realized something I was doing concerning the kegle exercises must be wrong. Drip drip drip - all day long - seven pads and three depends a day, squirting when I walked, and fire hosing my bed at night. So what the he**. I figured no pain, no gain, then started doing them as if I was crushing rocks. I contracted and squeezed as hard as I could and held as long as I could. 10 seconds is a long time when you give it all you've got. I didn't hold anything back and realized if I'm going to lick this thing it was going to take work. Lots of it. I had nothing to lose.

Two days of intense kegles, contracting as hard as I could, resting in between. Then every time I bent down and felt myself start to squirt, I squeezed as hard as I could as if I was biting a hole trhough my depends. As I walked I did them as hard as I could. I must say I was a little more determined, even angry, and wasn't going down without a fight.

Guess what? after the thrid day, I had a dry night. Only one damp pad inside my depends. Minimal dripping when I walk but no squirting. I don't know if this is the right way to do it, or if it would work for anyone else, but I seem to finally see some improvement. I'll let you know if it holds out......

Herman,

Congratulations! Incontinence improvement is often like this .. try, try, try .. suddenly progress! Hang in there.

Herman,

Glad to hear you had a breakthrough. Incontinence can be a real drag, even for a short time.

If you're not already doing it, make sure you use Desitin liberally every day. You want the stuff that's 40 percent zinc oxide. Otherwise, you're liable to wake up one day with the rash from hell. That'll make you long for the days when all you had was incontinence.

Good luck and hang in there. This too shall pass.

Jonathan

Herm, I'm glad to read that you are now making progress. With all the variability there is with recovering continence, it is good that you took a shot at a major change in how you were doing the exercises and that they are now working for you. Sometimes you just have to experiment a little bit to get things going in the right direction.

Dick1, I seem to have the same problem these days. After I started doing the Kegle exercises like I was bench presssing 300lbs with my only remaining control valve things turned around and I'm dry at night. But.... the days are a different story. When I'm walking around I leak and when I step up with my right leg to enter a doorway I spray or leak profusely. As I move aroound all day, I drip drip drip. I'm going through 7 pads a day and using one at night just to be safe. I go through a couple of depends during the day as the pads get saturated. I do use a pad inside the depends, and hope I can cut back on the double protection soon.

This is a very humbling experience but I'm going to continue with the kegle exercises as I have been because I'm seeing improvement. While I was *****-footing around, afraid to squeeze too hard for fear of breaking something, all I did was spray and leak. Exercising harder and stronger are better in my case. Once I started nailing the exercises like they meant something, things turned around for me.

Eureka!!!! I even had a sign of life from junior yesterday. Nothing big, but he's showing signs that he may not be totally dead after all. One thing I am trying to get used to is my manly vessle has suddenly turned into a wee-winky, in total retraction and hiding like I'm naked, just skinny dipped in 32.5 degree water and facing a north wind at the arctic circle. He ain't comin out for nothing.... In addition, the boys are hanging quite low, probablly because the veins and whatever kept them up was detached and gravity is taking charge. Not that it matters greatlly, but it's a different look. I was a fairly gifted man in my younger days, 6' 200lbs, no fat, and well endowed, but as the song goes "the times they are a changin' Got to suck it up, don't whine, and take things the way they are.

Anyway I appreciate the input from everyone, and I'm encouraged by each of you. Thanks again so much, best regards, hjs

Thanks for your comments guys
I am writing from UK my robotic opp was at addenbrookes Cambridge, if you find pads a pain as I did and difficult to manage try the condom catheter it gives so much freedom and you can walk about with no fear of leaks and wet pants!

It is a condom with an outlet tube which fits onto a tube and drains into a small bag.
It is manufactered by Coloplast.
Good luck all

Improvement can be slow for some people. Nearly 3 years on I still leak when hiking.
Krugels seem to help
Caffeine and food containing oxalix acid make it worse. Blue berries, Cranberries, nuts are not good.
Antihistamine for hay fever will put your pad use up!