How common is severe incontinence following RP?

I also was ok lying down and sitting, this usually announces a fast recovery. Although I had not initially much control when walking, I realized that every 10 days the amount of orine left in the diaper was reduced in a half (I actually weighted it). I was practically continent in about 2 months. No progress in one month is not so good, I understand you are worry about it. Others here have suffered more persistent incontinence and they will probably give you good advice about what to ecpeft wnd what to do. This is a very variable issue, a few are fully continent from the first day and also a few keep being totally incontinent and have to use different resources, including surgery. Most of us lie in the middle and eventually recover all or most of the previous control sooner or later.

Brittany,

Yeah, your doc isn't being very helpful. As I recall, you are in Europe somewhere? It's a bell curve, and it can take months to resolve. I know that's not pleasant to hear, but it's reality. A few men are totally continent the day the catheter comes out. Most start drying up at night within a few weeks, and daytime and moving around takes a bit longer. Unfortunately, there are some men who need additional things done to deal with it. Here in the US, most doctors insist that those final decisions wait for at least 6 months, if not a year or more.

That's the unfortunate part. However, there is hope: It comes gradually. It would be wise to ask the doctor if the had to take one or both nerve bundles with the surgery. If that's the case, then things get more complicated.

We're sorry to hear about this, unfortunately, it's not all that uncommon...but for most men it does at least somewhat resolve after a few months. Keep doing what he's doing--kegals really do matter. And don't be surprised if he has a few good days, followed by a few not-so-good ones, then better again.

There is a rule of thumb for recovery of continence after RP. It's all about twos out of threes. It goes that two out of three guys will be dry after three months. Of the remaining third, two out of three of them will be dry after one year. The remaining one guy in nine will need to talk to his doctor about what to do next (slings and artificial sphincters). Judging by the results men describe here that rule of thumb seems to be fairly close.

The problem with that rule is the impression it gives that men need to simply wait and see during the year after surgery. There are things they can do that may help, and even if they are ultimately unsuccessful they give the man something to do while he waits.

Your husband is already doing the first thing to try. Kegels do help but its early days for him. He should keep doing his kegels and hope for the best ... for a couple of months ... then ask his doctor to refer him to a physical therapist who works with men who have lingering incontinence after surgery. The therapist will coach him to make sure he is doing the kegel exercises right. Sometimes the therapists use a machine something like an EKG that measures the contractions of the pelvic floor muscles. Not only does that tell him if he is working the right muscles but it also gives him a week-over-week numeric measurement of his progress. This can let him see improvement even if he haven't gotten to the point yet where he stops leaking.

Good luck. He should work hard at those kegels and be patient. But not too patient.

Hang in there! It can sometimes take months even for people who get to where they never need a pad, like me. Some folks are good to go right away, others not. I agree that the electro-stimulation/biofeedback training treatments can be quite helpful. I also feel that walking helped me a lot. It might have been a coincidence, but not long after my surgery, and right after my biofeedback training had begun, I had to go on a walking tour of Europe. That was quite miserable, as I was filling up a couple of big pads a day, and public restrooms were not easy to come by. So I was kegeling all day long, trying to hold it in as much as possible. But I noticed significant improvement by the time we got back.

I can't remember all of the details now, though I am sure I wrote them down in 6 year old threads. But I was pretty bad for maybe a couple of months. Then maybe at 6 months(kind of guessing) I never needed more than 1 small shield per day. Then sometime between 6 months and a year I got to where I am now: I never really need anything, and many days I wear zero pads all day and night. (I just finished a 2 mile walk at 3+ MPH, no pad, and dry) But, I do sometimes wear that smallest shield, just for extra confidence on certain occasions. It could be better, I do have to pay attention and be ready to clamp down sometimes, and I still get small spasms when I get up from sitting that try and squeeze some out on me. But it is totally tolerable and at least 100 times better than that 1st month.

I also was dry at night and when sitting as soon as the catheter came out. My URO told me that was a good sign for ultimate recovery, even if it took a while. And here is something he told me about this "dry at night" only situation, and why it is a good sign of final victory. There are two urinary sphincters: one at the exit of bladder and just before the prostate(so called internal), and one in the pelvic floor just after the prostate and the penis. When they cut out the prostate, they also remove the internal sphincter and have to cut thru the urethra- the tube that the urine travels thru from the bladder on it's way out. Then they have to give what remains of the urethra a tug and sew it back together.

This spot (anastomosis) is often very close to the external sphincter. It will have sutures until they dissolve, and swelling and scar tissue. When we are laying down at night, it falls back just a bot away from the external sphincter, which can now easily clamp down enough to close the urethra. But when we stand up, and especially when we urinate, that sutured area- with scar tissue, will often fall down into the sphincter. If that happens, the strongest sphincter in the world is not going to be able to squeeze the urethra, with sutures and scar tissue, closed. But as time goes on, the swelling goes down the scar tissue might lessen, and for sure the sutures are dissolved. So it gets easier every week for that sphincter- which is also hopefully getting stronger every day- to squeeze that urethra closed. Like it is already able to do when we are laying down and the sutures are not in between the sphincter muscles.

So, if "He’s ok lying down or sitting", that is a very good sign that sooner or later, he will be OK. But some are not and require some additional surgery. Good luck, hang in there!

Post Edited (BillyBob@388) : 9/28/2021 2:52:32 PM (GMT-6)

Brittany56: "He has an appointment with a physio who specializes in RP recovery later today."

YAY! I bet that will help to speed up recovery! Good luck!

Maybe we have not underlined the benefits of walking. You should not refrain from doing it because of this problem. On the contrary, as Billybob said, trying to hold while walking is one of the most efficient ways of kegeling.

One of the key points (true for me also) is to walk, walk, walk, and then walk some more. Keeping the pelvis moving and strengthening the muscles is generally good.

Also, ask for a scrip for low-dose Cialis (2.5 or 5 mg tab daily). This will increase blood flow to the pelvis, which is good for overall healing--and will have other, happy effects. Even if that is not needed, the increased blood flow is overall a good thing for healing.

Statistics only apply to groups so, in my case, I ignored them and just knew that I leaked, a lot. I’d been doing the kegels and after a few months I was referred to PT. It actually got worse. And, yes, I was walking and, as a distance runner, was back up to 20-25 miles a week at 6-months post op. Still leaking. At the 1-year mark, after dealing with leaking while running the Pittsburgh half marathon, I schedule the installation of the artificial urinary sphincter. I’ve been dry for the past 2-years with no regrets.

I was not prepared for the incontinence issues either and it really shocked me after the catheter was removed. I got so tired of putting up with the constant wet pads and spurting every time I got up from a sitting position that I bought a Bard penile clamp off the internet...around $30. It was a lifesaver, hardly knew I was wearing it and I could go all day without a problem. After a few weeks I was able to stop with the clamp and just had to wear maybe one or two small pads a day. But it took me 10 months until I was totally continent again....it's been 2 years now and I haven't used a pad since the 10th month....PSA's have been running <0.01. Wishing you luck! It will get better!

Hello all,

Sorry for not replying sooner. I'm working full-time, looking after the kids and dealing with all this cancer stuff as well... We have also this week started the process of an official complaint for malpractise against the endocrinologists who didn't check his PSA throughout the period he was pumped full of synthetic testosterone, so that's taking time. We didn't want to do it until now (we have an associaton helping us, so it's no cost to us) as we didn't want to waste energy that could be better used fighting for good health. As Juan (my husband) is now dealing with the reality of life post-RP, he is angry and a law-suit is as good a place as any to direct that energy....The focus is on making sure that no-one else goes through what he is going through, rather than on making money.

As for how he is doing, we finally get to see the surgeon tomorrow, so we have a list of questions prepared. He got his first post-operative PSA results yesterday 0.012 ng/ml and free PSA of 0.018 ng/ml. That's good I think, right?

I'll keep you all posted about what happens tomorrow, and thanks again for the contact and support - it really makes a difference.

Aideen.