Post- prostatectomy incontinence

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67 yo. Live in Western Australia. Had robotic radical prostatectomy 3 weeks ago. Gleason 7 (4+3) at biopsy. Pathology at time of surgery confirmed Gleason score and showed cancer confined to prostate. Urologist says he was able to do nerve sparing and also able to preserve internal sphincter. Will have post op PSA in a few weeks. Since catheter removed 2 weeks ago, continent when sitting and lying but no good at all when standing or walking. If I go for a walk, leak constantly and when I get home there is no urine left in bladder. Using 3-4 Level 3 pads daily. Doing Kegels and seeing continence physio. Bladder control has not improved at all since catheter out despite Kegels and fluid restrictions. Physio says to be prepared for incontinence to persist for “months rather than weeks”. Not looking forward to months of this misery! Any suggestions?
 
Nicks said:
67 yo. Live in Western Australia. Had robotic radical prostatectomy 3 weeks ago. Gleason 7 (4+3) at biopsy. Pathology at time of surgery confirmed Gleason score and showed cancer confined to prostate. Urologist says he was able to do nerve sparing and also able to preserve internal sphincter. Will have post op PSA in a few weeks. Since catheter removed 2 weeks ago, continent when sitting and lying but no good at all when standing or walking. If I go for a walk, leak constantly and when I get home there is no urine left in bladder. Using 3-4 Level 3 pads daily. Doing Kegels and seeing continence physio. Bladder control has not improved at all since catheter out despite Kegels and fluid restrictions. Physio says to be prepared for incontinence to persist for “months rather than weeks”. Not looking forward to months of this misery! Any suggestions?
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I'm 5wks post op. Still leak with walking, coughing, laffing. It has improved. Base your progress by the week not the day. It does get better.
 
I think “months rather than weeks” is generally accurate. Sorry. Hopefully your progress will be quicker. I assume complete continence is your goal, but I really recommend that you look for the small gains as well. You'll see progress if you look for it, and try to be pleased when you notice it. It means you're on the road to recovery. All the best!
 
Chuck11 said:
I think “months rather than weeks” is generally accurate. Sorry. Hopefully your progress will be quicker. I assume complete continence is your goal, but I really recommend that you look for the small gains as well. You'll see progress if you look for it, and try to be pleased when you notice it. It means you're on the road to recovery. All the best!
Click to expand...
 
Nicks said:
67 yo. Live in Western Australia. Had robotic radical prostatectomy 3 weeks ago. Gleason 7 (4+3) at biopsy. Pathology at time of surgery confirmed Gleason score and showed cancer confined to prostate. Urologist says he was able to do nerve sparing and also able to preserve internal sphincter. Will have post op PSA in a few weeks. Since catheter removed 2 weeks ago, continent when sitting and lying but no good at all when standing or walking. If I go for a walk, leak constantly and when I get home there is no urine left in bladder. Using 3-4 Level 3 pads daily. Doing Kegels and seeing continence physio. Bladder control has not improved at all since catheter out despite Kegels and fluid restrictions. Physio says to be prepared for incontinence to persist for “months rather than weeks”. Not looking forward to months of this misery! Any suggestions?
Click to expand...

Today is day 30 for me and I’m in the same boat. If I could sit or lie down all day then hit the restroom immediately upon standing up I’d be good! I’ll go for a 4 mile walk and can’t pee a drop when I get back, pad full. Go upstairs? Forget about it. I’m 3-5 pads a day I think, depending on my activity. I’m 90% dry all night but get up 2 or 3 times to urinate. Dull ache down there when I stand too long, thankfully burning sensation has stopped. My only suggestion is to accept it may be months rather than weeks, as that seems to be the trend. Good luck.
 
Wife here. Husband age 70 had robotic radical prostectomy one year ago—almost to the day. Cancer extended beyond gland but thankfully not into lymph nodes. Was initially 7-8 pads/day but now averaging 2. Had hormone suppression shot about 3 months ago—well tolerated so far. Giving time to regain further continence and planning radiation to start around March 1. In the meantime, we’re trying to live life to its fullest. Please wish us luck!
 
There are many posts on this topic if you search, but recovery is a process. Your body is healing from a major surgery and it needs time to heal as well as learn some new muscle memory even with nerve and sphincter sparing. I'm 2.5 years post, was a 3+4 Gleason and also thankfully contained. I saw the most progress over initial 6 months, but additional incremental improvement for about 9-12 months. Both good days and bad and sometimes wondering if it would actually get better. I was in depends for about the 1st month then multiple pads per day and then 1 of the thin pads. I still use less than 1 thin pad per day (based on activity, more strenuous is definitely worse). I have decided to go for a sling in early 2022 as too many activities trigger leaks. Many people get full recovery and don't need the sling or AUS, but almost every story has a similar theme of needing a few months as opposed to days or weeks to see significant progress. Best of luck to you!!
 
Thanks to all who have replied. I hope for the sake of younger generations that a less invasive form of treatment (and I don’t mean radiotherapy or hormone treatment) can be found for this insidious disease.
 
Mine didn't really start until a couple of other conditions & operations starting 10 yrs later, had similar Gleasons. Last Operations 3 yrs ago left me very bad, diapers. Now down to pads, 2nd lowest of absorbancy.
Standing after sitting or lying down does seem to set it off, have to hurry. Keep up the Kegels and noticing what sets it off. It is so - ahem - darned frustrating. Try watching caffeine & sugar intake to see if there is a correlation.
On here, we probably hear more of the long-lasting or not-resolved-at-all, but it can take years, for some, weeks or months for others.
Sounds like Australia Docs got a better attitude than USA, or yours do, anyway.
Those comments about Docs are all too common, on here.
 
Hey Nick: They are correct, it will be months rather than weeks. Get a good PT who understands Kegels and get to doing your part. Buy stock in Depends or your favorite diaper/Pad because you will be using the hell out of them. Work on your attitude and remember you're cancer-free with some hope of maintaining some kink of sexual function after this all blows over. I am one year 3 months post OP and back to normal activity. I have not had any leaks now for over three months. I think if your Surgeon was able to spare some nerve etc for you that will make you a very lucky guy. Drop me a line when you come to that conclusion yourself. Until then keep on keepin on! Rayl in Arizona...
 
@Nicks Hi mate, I'm also an Aussie, in SE QLD. 66yo and biopsy score of 9 out of 10, so a nasty one, but luckily we got it early and urologist is confident it was confined to the prostate. And he was able to spare my nerves on one side.

I'm currently 11 weeks post surgery and just now in that 2-3 month post surgery window where most people advise they start to see slow but steady improvement with incontinence. And I can report I am also starting to see some minor improvement but I need it to keep going.

I started a thread a week or so after my surgery and got some good info in responses, and I update this thread every few weeks with my progress ~ link below if you want to have a read of it. And as others have mentioned, there are also other threads posted by people at different recovery stages that are also worth seeking out.

Log In To Continue | National Association for Continence

forum.nafc.org forum.nafc.org

Cheers, Doug
 
Nick,

I've read the responses thus far and all of us who are recovering from RP share very similar experiences.

What I found is the protocol prescribed by the medical community addresses half the problem. The half that deal with the physical actions a person can take. The other half of the problem is what the medical community can't address. That is the body's own healing process. Doing Kegel exercises, watching your diet, walking or mild physical exercise all help. The rest of the recovery is dependent on your own body's ability to compensate for the trauma the surgery impacted on it. That my Aussie friend takes time, lots more time than any of us would like it to take.

This forum is a great resource for you to see how others have dealt with the same issues you are encountering. We also welcome your experiences and like to know your progress.

Greensleeves
 
Hello Nick, my situation was very similar to others on here. At my first visit to Dr. post op (about 5-6 weeks out)I was very disheartened at my progress. The nurse practitioner assured me I would be in a much better place at 12-13 weeks. I was. I am now 11 months from surgery and mostly continent. I have occasional stress incontinence and occasionally wet a pad at night. I don’t manage what I drink very well sometimes. Therefore I wear a pad to bed most night but none during the day. I seem to be the odd man out in that situation. Most people are dry at night and have more trouble during the day. Mine is the opposite. Hang in there, you should contain to see improvement.
 
Agree with all the helpful suggestions. 66 years old and I had RPR two years ago. I continue to make small progress. I found doing a double void when urinating (stream is going and you stop it for a few seconds) helped ensure that I could control my bladder. You not supposed to do double voids often, like once per day. After a while my physical therapist said to stop doing double voids. I continue to do kegels (hold for a count of 30, 10 time over three sets, followed by a kegel machine gun. Recently, I have made some progress with a more rigorous tracking of when I void. I try to wait at least two hours between voids. I am down to one pad a day and two pads when I play tennis for an hour. Most importantly, stay positive, especially if you are cancer free and can get an erection. My physical therapist told me that most of her male pelvic floor patients would be thrilled to have an erection twice a week. That put a smile on my face and made the little leaking throughout the day seem like a minor inconvenience. Enjoy the sunrise.
 
I am 58 and 11 months out. I would be pleased to have an erection twice a month. I have yet to see much improvement in that area. Not sure what the problem is but still hoping. May never see improvement but hey I’m alive and doing well otherwise.
 
I'm 72 and at one year post surgery this monthfrom a Gleason 9. No pads but slight leaks walking or straining. Not to bad considering 6 to 7 pads to start. Just use dark pants. Did have a several week set back after neck fusion 3 through 7 in August. Again slight leaks now and I really don't do the keagles any more. I guess I should.

Gary
 
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