Incontinence Recovery Period

Hi Tom,

You definitely need to give it more time.  After I had my Da Vinci surgery I went from a diaper +pad to a pad in about 1-2 months.  i continued to have improvement for about 1.5 years and then leveled off.  I now wear a light pad daily for protection but when I change it every night there is no weight to it,  not leaking much.  Hopefully you will see improvement as the weeks go by, keep doing the Kegals(I still do them 5 yrs. later).  At five weeks out you still have a lot of healing to do.

Dave 3+4

Tom,

Like the writers above, I agree that you just have to give this time.   Your current level of control actually does not sound bad at all.  Several months is commonly required, but all guys vary.  Some here have written of regaining control a week after surgery, while others took a year or more.  But your current situation does not likely indicate that eventual full control won't happen.

My incontinence cleared up around the 4 to 6 month time.  At this time I am fully continent.  My RARP was done on 3/2018.  I do not wear any pads (thin or thick at this time).  I kegeled a lot pre-surgery and post surgery.  Also, I practiced starting and stopping my flow a lot.  I too felt like when is this going to end.  I filled a many pad, but it dd end.  Looks like you are on a good road to recovery.  Hope this helps.  Good luck on your journey.

Get Walsh's book ( he was a pioneer of nerve sparing surgery at Johns Hopkins).  He recommends antihistimines or decongestants for urine control.  It is not fool proof but helped me.  I had the DaVinci surgery and was continent in 5 weeks.

Hi Tom,

See what happens in the next few months.  If you don't feel your current therapist is helping, ask for another one.  I only did two different variations of the pelvic squeeze.  A 30 second hold 3-4 times laying in bed in the morning and about 3 pulse sets, each pulse set had thirty quick ones, also done in the morning.  Still do them every day.........You might be right, maybe you are weakning the pelvic muscle with too many different type of excersize. The progress can be slow at times and measured in months not days.

Dave 3+4

Tom,

My recovery was very slow for the first three months, and then really started to pick up in the fourth month.  It was really months four, five and six  where the progress was made.  Also, I followed the Mayo Clinic instructions for Kegels, which are less tiring.  Hang in there, it will get better.

Eric

Tom14u said:

Week 10

Well its now week 10 and zero change in my incontinence.  Now it is actually starting to get very frustrating.

This not not what I expected to say the least.  

 

I have done more kegels than I care to count, I am on a second Pelvic Floor therapist to see if it helps but to be honest I feel they are a total waste of time.  Initially they show you the  pelvic floor excercises and teach you the correct way of doing them but after 15 visits all I feel the do is show you a new excercise, tell you things will get better then send you home with less cash.  I must have at least 25 different pelvic floor excercises by now.

I have also cut down on the excercises, I was told to much is not good either, the sphincter can tire easily I guess, well that was no different either.  I cut it in half and my leaking is no different.  Ec=venings are not so bad, I get up twice a night for the bathroom and I am able to go.  I feel it does not go enough but I do stream for about 10 seconds.  In the morning minimal wetnetness on the pad.  

During the day is most of the problem.  I do not get this urgency I get at night, if I go for a walk I will be leaking the entire time during the walk, by the time I get home time for a change again.  If I sit at a desk I do get an occasion bathroom urge but thats about it.

Coming out of the shower is no fun either, that act of drying myself cuasing drips all over. I can actually just stand still and see the constat drip.  Not happy at all.  Had a supposedly very expierience guy to the robatic surgery and at my age and health I was told I would be relatively dry by now. They really should not say that if its not true, maybe I am the exception.  

Anyway that is my 10 week rant, hoping things will start to improve but so far ZERO PROGRESS.

 

Personally, I do not think you are the exception.  As I said earlier, it took me 4 to 6 months.  I too wondered when was this going to stop.  I did not let it slow me down or get me down.  My wife and I camp a lot.  So, I went camping pads, depends and all.  As time went on, it got better.  No depends, just pads.  No pads, just thins.  No Thins.  Fully continent.  Your surgery moved and removed a lot of tissue around.  It takes time for your body to heal and figure out a way of getting back to normal.  I can remember when I was laying on the couch and all of a sudden I had no sensation that I was leaking or urgency to urinate.  Initially, I thought something was wrong.  From that day on, I felt like I was making progress.  It did not stop that day, but it gave me hope that it was and it did.  So, as we battle " Emperor of all Maladies", we share our experiences.  We offer hope.  So, good luck on your journey.

As Joseph said, keep plugging along with the advice from experts and especially keep doing those Kegels.  It can be a long road back to continence.  My own story may offer you some hope.  I had da vinci surgery in October 2017, with nerve sparing on one side only.  I started with pelvic floor therapist in November of the same year, two appointments / week stepping down to 1 per week.  By April 2017 I had shown much improvement, 1 Depends Guard per day unless I was particularly active then it was usually 2.  My assessment of continence was/is how much I leak during my morning 6 - 7 mile walk.  (I have a very active dog to tire out each day LOL!). My first therapist discharged me in April 2017.

i continued following her prescribed Kegel routine 3 sets 20 sec Kegels in the morning and two sets of the same at night.  She later emailed me and said 10 sec hold Kegels would be good enough for maintenance purposes.  At this point my leaking would be around 10g of urine measured by delta pad weight post walk, 10g of urine is just slightly less than 10 cc because urine has a slightly higher specific gravity than distilled water.  Regardless, 10 cc of urine will leave a pretty big wet spot.  By April of 2018, my leaking had plateaued between 7 - 10g per walk and I complained to my urologist/surgeon.  He referred me to Therapist #2.  Her first step was to reduce the number of Kegel sets I was doing to just 3 sets of 10 reps per day.  1 set Kegels standing in the morning, 1 set sitting at midday and 1 set laying down at night.  Those Kegels started with 10 sec holds and ended six months later with 25 sec holds.  Between June 2018 to December 2018 my leaking on a typical walk had dropped to around 5cc per walk, or 0.1 - 1cc per mile.  Somewhere between surgery and December I had reconciled myself to never being dry again and a leak rate of 1 cc / mile would be acceptable.  Given that the 1 cc / mile represented my worse days I was really happy.

Sadly that performance didn’t last.  By April 2019 I was approaching the April 2018 numbers again even though i was continuing with all the exercises and diet/liquid intake lifestyle changes as prescribed.  I talked to my family doctor about the incontience during my annual physical and suggested I try Oxybutynin (for bladder spasms).  We discussed that I had tried Myrbetric previously and observed zero effect.  however he suggested I take it last thing at night so it’s residual effect would still be available for my morning walk.  I tried it and observed immediate effect - which I attributed to placebo effect... The leaking immediately declined to sub 1cc/ mile.  Anyway, in my 6mo PSA screening follow up I complained to my urologist/surgeon again about the incontinence.  September 2019 I started with my third pelvic floor therapist.

Given my past experience with PF exercises we both recognized that the best she could do would be incremental improvement however she did indicate that improvements are sill observable up to 5 years post surgery.  She recommended a series of stretches to increase pelvic floor “suppleness” so the muscles were not constantly under tension.  She also suggested a series of non Kegel exercises to do 2 or 3 times per week in substitution for a set of Kegels.  I also suggested (based on my past bicycle racing training regimen) alternating days of short but intense 10 sec Kegels with days with longer 20 sec Endurance Kegels.  i also did biofeedback with her.  I again found improvements were possible.  i was discharged from her care last week.  My leak rate per mile is between 0.2 to 0.8 cc / per mile and I use one thin Depends shield per day which weighs between 8 to 14g when I remove before bed.  For perspective a new Depends Shield weighs approximately 5g and urine weighs approximately 1g/cc so on a day where the final pad weight is 14g I have leaked around 9cc of urine.  Usually those 14g days are when I mow the yard in addition to my 7 mile walk.

I had a six month screening appt with my urologist yesterday where we discussed incontience again.  I pointed out (because I have all my results charted which I take to the appointments) the fact that oxybutynin had had an immediate effect noticable before any of PF therapist #3 exercises effects.  That was when he said up to 35% of men have bladder spasms (detruser overactivity) post RALP.  That number is higher than the 16 - 20% my research of internet available documents had shown but still in the same ballpark.

In summary:

1. we’re all different and our roads to full recovery will be shorter or longer than average.

2. Pelvic floor exercises do work, and they work better the more diligent one is when doing them.  However, doing the same thing day after day may not be the most effective.  Mix things up, short intense Kegels, long endurance Kegels.  Allow yourself a day off occasionally and don’t beat yourself up over it.

3. Improvement is possible even beyond the 12 - 18 months post surgery period you’ll see referenced all over the Internet.  In other words what you see 12-18 mo post surgery is not necessarily what you get.

4. Try not to let the leaky days get you down.  Psychology is important.  If you’re bummed out with yourself you’ll just walk around thinking “stay dry, stay dry” and tense up your pelvic floor muscles and tire them out making things even worse.  Ask me how I know this?!

5. There may be an additional factor beyond intrinsic sphincter deficienc causing your incontinence, some of us also have bladder overactivity.  Before surgery we might never have realized it because we had an internal sphincter, prostate gland and an external sphincter to control continence.  Post surgery we are left with one sphincter.

6.  I’m not suggesting you go to the lengths of weighing pads that I have.  However record keeping is important while your looking for improvement.  If you leak a lot the day after you visited Starbucks 10 times that probably indicates caffeine is a factor in your leaking.  How will you correlate cause and causation without some records?

Lastly, and most important.  You can beat this!