Incontinence

[mcg2]

I am just over three weeks post De Vinci procedure. I am 55. I was very active running 6 miles three times a week and gym at least two days a week. I am struggling with this incontinence. I don't have the stress incontinence. Don't leak much with sneezing or coughing and actually do pretty well over the night. It is when I am standing or walking that I leak about every 30 to 60 seconds. It is massively uncomfortable. I do the exercises and it doesn't seem to be doing much. I have been told to just be patient and this will resolve but it is keeping me very sedentary because when I sit or lay down I reduce the leaking by 90%. What experiences have you all had and what can I "look forward" to?

[Olman]

I am totally icontinent after a TURP procedure six months ago. I am currently wearing a Cunningham Bard Clamp along with a pad. Google it. Uro says radiated tissue is causing the problem. Now waiting for an artificial sphincter with a 90% success rate that should be inplace and working by Christmas. If that fails its the Bard Clamp for life. Not a comforting thought.

[DanWinters]

I am 57. just had My Robotiv 30 days ago, foley came out at day 8. I was never so miserable with the incontinance but it will slowly improve. I am a runner also. but only 4 miles three or so times a week. i am walking 4-5 miles 4 times a week and have the leakage up and walking. I tried to run a few steos this week and every step was a squirt. None when sitting unless i put pressure on the perineum while rolling forward out of seat. Lying down I have none. I had a big change in leakage about end of 3 rd week. Do the exercises. I will soon be doing penile rehab. That will be the next urine hurdle. If I touch myself in a sexual way. urine wants to leak out. Am exploring options and means of using this as a plus for sex since I cant ejaculate anymore and some actually find it erotic. Hang in there. I still have days where I am negative but see a glimmer of hope. I am not a patient person, but there is no speeding this up. Just be steady in your efforts. Tena pads are shaped good and I wear the ugly dorm fitting depends that sre supposed to look like underwear. I have had on regular underwear doe two days now and just wore tha pad in my rinning shorts. and so far only leaked out of it a little. I change them 3-4 times a day. the first 3 weeks. you want to shower all the time and your balls feel nasty. but it will get better.

[dentaltwin]

I am today (Tuesday) exactly 2 weeks post-op (laparoscopic NON-robotic), and 5 days since my foley was pulled. First day I had very weak urine stream, but not much leakage. I'm guessing there was some urethritis and the swelling that slowed my urination also discouraged leaking. The next few days my urination became more normal, but my leaking increased. Scardino (Prostate Book) says that "the generally accepted definition of SEVERE incontinence after prostate cancer treatment is leaking 2 or more tablespoons of urine per day AND being moderately to severely bothered by it as measured by a questionnaire. The response to leaking urine is highly subjective. Some men find it intolerable to lose a single drop, while others are not particularly troubled by the need to use a few small, unobtrusive pads per day to keep their clothing dry." I'm pretty sure Scardino is not referring to the first several weeks, during which most men will probably leak some. I also probably am one of the prima donnas who will go into a funk every time I feel a squirt has just occurred.

My doctor said he had managed to spare the nerves bilaterally (there was some doubt pre-op) so hopefully I'll get most of my function back.

I used to be fit, but I cycled (my knees never liked running), and while I haven't done much lately, I hope to get back to it--it will help my head even if it does nothing for my legs and cardiopulmonary system.

Any cyclists out there? Obviously on a road saddle you're sitting right on your perineum. I should ask my doc before I resume riding, but wonder if any cyclists out there needed to make any accommodation for their changed anatomy.

[David1958 in reply to dentaltwin]

Maybe, I tried to get back in the saddle too soon. I found riding on a standard bike saddle intolerable. It was uncomfortable as hell and I felt like I had to pee right NOW when I got off the saddle. I tried at least 8 different seats before I gave up on riding an upright or DF bike. That was when I made the switch to recumbents and I have never looked back. It is the most comfortable biking I have ever done. It has been seven years since the surgery and I can ride a DF now without feeling like I have to pee. You may just have to reintroduce bike riding a little bit at a time.

[dentaltwin in reply to David1958]

DF="diamond frame"? (I had to look that up). I've ridden far less the last several years. I'm a bit intimidated about riding a recumbent in city traffic, but certainly that would solve the obvious problem. The boilerplate postop advice I was given was not to ride for 3 months. We'll see. Thanks for the suggestion.

[David1958 in reply to dentaltwin]

We ride as a string of recumbents on A1A between Boynton Beach and Delray Beach. Riding in pod of DFs would be scary beyond belief. Florida is not a great place to ride on public streets. It seems that a cyclist is getting killed too frequently. I am all for equal rights of the road for bicycles, but I will not die to prove a point. There are so many bikes riding on A1A it seems the locals have gotten used to them and gives them room. The DF pods are huge (30 to 40 bikes) and take up a whole lane. Recumbents take some getting used to (two wheel versions). Recumbent trikes take no time to get used to. Hop on, clip in, go!

[speedyhaddock]

Three Weeks post op is very soon to expect to have complete control back You have just undergone major surgery BE PATIENT

[Hidden]

Just to reinforce the need to be patient. You need to let the anatomical changes settle down. Leaking will be worse when there is more pressure on your bladder e.g. when you're still standing up, riding a bike or crouching. Severe incontinence, (whatever the amount), for me would be if I leaked even when I was lying down. You say you don't leak so much when lying down, so that's a start.

It would be horrible of course, if you had to wear pads long term. For me it's partly a matter of how I perceive it. I don't ever wear pads but do leak sometimes, usually after taking a pee and maybe less than once a day. It does feel a little damp for a short while, but I don't see it as dirty and no one else notices. I change underwear regularly.

There are things you can do to reduce leaking, (as well as Levels). I read on here that after taking a pee you press on your urethra in the perineum just under your testicles then run your fingers up and along the urethra and squeeze your penis and any any pee left in your urethra will squeeze out.

Erectile incontinence and climacturia, unfortunately are never going to get better. Again, it's a matter of how you, (and your partner) perceive it. It can be erotic. You can reduce it by emptying your bladder "in anticipation".

Urine has a bad reputation but is normally sterile. Apart from being wet after a while the urea in it breaks down into ammonia which makes it smelly. It's also usually mildly acid so could stain. These only if left too long.

Obviously if after months, you are still leaking a lot, you will need further help, but give it chance.

[mcg2]

So it seems the consensus is to just be patient. LOL, I'm not good at that. And dentaltwin i used to do a lot of tour biking but not so much anymore. We have horses so my riding is equestrian in nature not bike. Obviously I have not been in the saddle since the surgery. I go back to the surgeon on 5 October and I will see what he has to say. I kind of feel like I may be having some bladder spasms and I wonder if that is effecting this. All uncharted territory for me. I am fortunate to have a supportive wife and she keeps me grounded. I don't regret having the surgery. It looks at present like they got it all. Margins clear as well as lymph nodes. Down graded me after the surgery from 4+3 to a 3+4. Was able to spare the nerves on one side. I will give it time, begrudgingly but I will.

[dentaltwin]

I'm guessing the pressure of a (horse) saddle ain't that different from a bicycle saddle, though the bearing area of a road cycling saddle is smaller. One of the instructions I got was no cycling for 3 months post-op--but the recommendations are pretty strict (eg. no lifting anything over 10 lbs. for 6 weeks--gets me out of walking our dog for a while The nurse read me the reader's digest version of the postop path report, but I haven't been able to get my hands on it myself. It's fairly similar to yours--3+4, no positive nodes, margins clear, no seminal vesicle involvement. Pre-op MRI was "suspicious" for extracapsular spread, but none was found post-op. So I'm pretty happy for now. Good luck to both of us with the drips.