Aussie here, just had a Robotic Assisted Laparoscopic Radical Prostatectomy

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HI @DouginOz, it sounds like you're on the right track and have everything you need right in place! I, too, have always been a walker and I would be lost if I couldn't do that any more. But keep working with your doc to find the right balance and when your knees feel up to it you can always repeat that 3 km circuit especially if you have a really nice day in the forecast!!! And swimming is great exercise too! And that nature reserve sounds like a great place to walk and enjoy the weather!!! We have a lot of nice days here in central Florida and I don't like to sit inside and "veg out!" If I don't get to take at least one good walk a day then I really miss it!

 

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Aloha you are welcome

 

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Hi, All. 68 year old male. Just had robotic radical prostatectomy October 11. Catheter out October 19. All afternoon I cannot stand up without needing to void. Also getting a burning sensation in the Urethra as I try to hold things off until I get on the toilet and let go once I sit down. Is this normal in your experiences?

I see there are a lot of men here who have gone down the path I am on. Glad I found this Board and appreciate any help you can provide from your experiences.

 

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Welcome GaDawg! Your feeling like you need to void immediately after standing is completely normal. I think most of us had little control in those first weeks after surgery. It definitely takes a while to heal and gain control, like…months. As far as the burning sensation goes, I didn’t have that, but I'll bet it’s not unusual. May want to check with your doc on that one.

Settle in. Healing up is going to take a while, but you’ll get better.

 

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Sounds pretty normal. Burning shouldn’t be very bad, at least in my experience. I do think it is fairly normal for many people to experience the burning sensation. Everything is still tender and healing. I wouldn’t even know I was about to go very bad for the first several days until I stood. Then would almost sprint to the toilet only to
Start going as I cleared the door. Haha

It gets better. Hang in there

 

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@GaDawg I am 66yo and now almost 9 weeks post surgery. I also experienced some burning sensation in the first few weeks which is apparently quite normal as your body recovers from surgery ~ my Urologist got me to do a urine test to check for infection just in case but it was clear and the burning cleared up after a few weeks.

My understanding is that there are two issues to deal with regarding incontinence following surgery :

(i) During surgery one of the muscles that controls your bladder involuntarily is removed with the prostate and the remaining muscle (internal urethral sphincter) is traumatised and generally will not start to recover and help with bladder control again until 2-3 months after surgery.

(ii) Doing specific pelvic floor muscle exercises (kegels) religiously will help train your pelvic floor muscles to assist your internal urethral sphincter muscle with bladder control when it starts to recover and kick back in after 2-3 months. This should result in a steady improvement in bladder control from that point.

My urologist referred me to a specialist pelvic floor physiotherapist I see every 3 weeks and she has been invaluable with explaining everything to me and ensuring I am doing the pelvic floor muscle exercises correctly and on the correct muscles.

If you are not able to see a specialist pelvic floor physiotherapist in person, this guy in Australia is also a very experienced physiotherapist specialising in prostate cancer recovery, he has some very helpful videos on his youtube channel and has also written a book which is currently in its 3rd printing ~ I bought the book for around A$15.00 plus postage and have found it extremely helpful and motivating, I reread it once a week to help keep me motivated.

Craig Allingham

Craig is a leading clinical and business educator for physiotherapists and other manual health practitioners. His workshops are informative, entertaining and relevant. This channel hosts several short videos from his courses.

www.youtube.com

A/Prof. Craig Allingham – Prostate Recovery MAP

prostaterecoverymap.com

I found that the first few weeks after surgery were challenging as I had very little bladder control even when lying or sitting down and trying not to move much. I did my pelvic floor exercises religiously and gradually found my control improving while not moving much. However, as soon as I got up and started moving around I started leaking. My urologist had instructed me not to do anything strenuous until at least 6 weeks after surgery, so this period wasn't too onerous as I spent most of my time reading, watching TV, and browsing the internet.

From the 6 week point I started walking my dog daily again and being more active, swimming most days, washing the car, mowing the lawn, helping my wife with housework etc. At the 8-9 week stage now I get up twice a night and empty a full bladder and have only a little overnight leakage in the pad I wear to bed. Being active and moving around during the day, taking the dog for a walk and doing stuff around the house/yard is still challenging and results in solid leakage, I go through 2-3 pads per day.

However, I do my exercises religiously 3 times a day and can feel the improvement in the strength of my pelvic floor muscles when I clench. The improvement in bladder control is not coming overnight but I believe my control is improving slowly and steadily week by week.

A very helpful benefit of the whole process has been that I have been motivated to review my eating and drinking habits and have ben able to lose 6% of my body weight to date and reduce my tummy quite a bit, which in itself also helps by reducing the pressure on my bladder when standing.

Cheers, Doug in Australia

 

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GaDawg, I think DouginOz sums up the healing process post-surgery very well, at least from my experience. Like you (and many others on this site), I had very little control over incontinence in the few weeks after the removal of my catheter, and I too suffered a burning sensation when urinating, which lasted a few days. It was also distressing to wake up several times in the night to wetness in my groin area, a heavy diaper, and a large wet stain on my sheets. I gradually learned to better manage leakage, and then I eventually began to see that I did not need to manage the incontinence so much because it wasn't happening so often. I am almost at the 3 month mark of my laparoscopic surgery, and the incontinence is still an issue but not nearly as much as it was in the first few weeks after surgery. So, find solace in the fact that it does get better.

My only difference from what many others on this site say has to do with the faith people have in kegels. Frankly, I stopped doing them because I couldn't remember to do them consistently, I never quite knew that I was doing them correctly when I did do them, and I seemed to be getting better even without doing them consistently. So, I stopped doing them completely about two weeks ago, and I have continued to improve. I do, however, do other light exercises consistently such as walking about 3 miles five days a week, as well as light weight training about 2-3 times a week. Additionally, I do stretches and a very modified burpee exercise most mornings, which are very energizing and a great way to start my day.

So, be patient with your body. It is trying to heal, but it will do so at its own pace.

 

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Thanks, All. I was hoping for a faster timeline to get back to normal, but clearly I am going to need to be patient. Originally, I thought I would be back on the pickleball court a month or so after surgery. So much for that idea.

It is very helpful to hear from others that what I am experiencing is pretty normal. Thanks again, everyone for responding so quickly and sharing your experiences.

 

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Good morning all, just had my 2nd winning morning in a row

At 11 weeks post surgery now. Since the start of week 7 my morning routine has been to walk my dog along the nearby nature reserve for around 3 kilometres. At the halfway point I sneak into the trees and try to empty my bladder and then resume my walk and do my first of 3 sets of kegels for the day during the walk back home. I'm thinking I need to learn to control while walking so see this as a worthwhile although messy exercise and my physio agrees. I do my other 2 kegel sets sitting down during the day.

I have consistently found at the halfway point of the walk my pad is quite wet through leakage and my bladder is empty so not able to release anything. And then I arrive home with an even wetter pad and a bladder still empty.

But yesterday and today, at both the halfway point and arrival home, I have been able to release a reasonable amount from my bladder at both points. My pad has still been wet but not nearly as wet. And this breakthrough has coincided with less overnight leakage also. My overnight leakage has been improving for a couple of weeks now, but last few nights has been almost nil.

So I feel like I am starting to win at this point.

Cheers, Doug

 

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Sounds like good news Doug! I'm convinced that it’s essential to look for little indicators of progress like that. Recovering from this surgery involves lots of little steps and achievements. It helps to see every one as an accomplishment. Keep moving forward!

 

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Hi all. 5wks post now. I manage to stay dry at night. Although up 2-3× to void. I seem to have better control in the morning and less control as day goes on. I work night shift 12 hrs am looking for suggestions besides Tenna pads or depends. There are so many products out there. Just not sure what's effective and what's a waste.

 

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Time for an update, now at exactly 4 months post surgery. Since my last post a month ago, it has all been good news for me.

I saw my Urologist for a post surgery followup, blood test showed PSA levels as "undetectable" which confirms we got my cancer early while it was still contained to the prostate and got it all. Next appointment is for Mid March to check PSA levels again and start working on ED, I am continuing with 5mg daily Tadalafil for the time being to maintain penile blood flow.

The trend beginning in my last post a month ago has continued and there has been steady improvement in my incontinence over the last month. I have graduated from pullups to medium pads and rarely leak at all at night now. I can do my morning walk combined with kegels with steadily reducing amounts of leakage and increased bladder retain. I then get through the day with 1 or 2 pads depending on how physically strenuous my day is. And with my increasing energy levels now and the warm weather, I have been spending some pretty energetic days digging in my vegetable garden with growing confidence. I went shopping with my wife yesterday for most of the day and got through it with just the one pad.

I also saw my pelvic physiotherapist yesterday and she was very pleased with my progress and feels I should not need to see her again if I maintain my kegel program and my current steady improvement continues. I feel seeing her every 3-4 weeks since 4 weeks post surgery has been the best thing I have done, she has explained to me exactly what happened to my pelvic area with the surgery, what we were doing and trying to achieve with kegels, used an ultrasound initially to ensure I was doing the kegels correctly and on the correct muscles, and has reviewed and adjusted my kegel program every 3-4 weeks, gradually increasing the repetitions, intensity and complexity of the exercises. She has been worth every cent she cost me at A$120 for the longer initial consult and A$80 for each subsequent session. She did say I am ahead of the average progress for her clients but I have been very diligent and focused on working hard at my kegels to improve my incontinence and she is very pleased with me.

So keep your chins up guys, stay motivated and work hard at your kegels. If you can't locate a good experienced specialist pelvic physiotherapist near you to see personally, there are some good online videos on youtube that will help you understand the kegel process. For example Craig Allingham is Australian and has some down to earth videos on his youtube channel and has also written an easy to read book I found very helpful which is in its 3rd printing and can be bought online for around A$15 plus postage. I have posted links to his youtube channel and book site previously on this thread.

 

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How many weeks post-surgery are guys starting pelvic floor therapy?
Background: I am three weeks post-surgery (robotic-assisted laparoscopic RP), and two weeks post-catheter removal. And 0% continence. Normal weight/in great shape for 69 y.o. before surgery. Been doing kegels since a week or two before surgery. Watched Craig Allingham's youtube videos last night, which will hopefully help me improve my technique, but I do want to start with a physiotherapist asap.

 

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RJ_by_the_sea:

I am 75 years young and had my prostate removed end of March last year (11 months post surgery). I began kegels as soon as they took catheter out. Therapy with qualified therapist began about one month after surgery. At 3 months I was using only one pad per day, and only had it on during exercise, e.g. golf, jogging. No leakage at night. I continue to have a problem with ED, but Cialis (5mg per day) and Trimix injections 2-3 times per week definitely get a rise. I continue to be hopeful that in the future I will not have to stick my little friend with a needle to get a rise out of him, and my erections will come back on their own. Keep the faith.

 

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@RJ_by_the_sea It was 3 months after prostatectomy when I got an appointment with a pelvic floor physical therapist. I started kegels when my surgery was scheduled, stopped while catheter was in, and restarted when catheter was removed.

It took a month (December 2020) to get the doctors office and insurance on the same page. I gave the office staff 2 weeks, then I called and used the patient portal. The patient portal provides written trail of communication.

 

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I was 6weeks when I started.

 

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@RJ_by_the_sea I watched Craig Allinghams videos and read his book pretty much straight after surgery as both were recommended to me. I started doing the exercises as recommended and described by Craig the day after catheter removal 8 days after surgery.

At my 1 month post surgery checkup my Urologist recommended I see a physiotherapist specialising in pelvic health and recommended one to me and I first saw her 2 weeks later, so 6 weeks post surgery. At our first consultation she was quite impressed with my knowledge level and where I was at from following Craig's information and advice and she put me onto a personalised program with 3 weekly followups and adjustments which has worked really well for me. She used the program to keep challenging me steadily by gradually improving intensity and repetitions of exercises without overdoing it which suited me perfectly. And as I improved she started also adding more complex exercises also. She was absolutely worth every dollar she cost me.

I am now 6 months post surgery as at yesterday. I haven't seen the physio for a few weeks now witrh her agreement as have not needed to. I no longer leak at night and don't wear a pad to bed and I get through days with one pad, even heavy physical days digging in the garden. The biggest continence improvement period for me was from 3 to 5 months where the weekly improvement was very noticeable. The last 4 weeks the improvement rate has slowed but is still improving albeit at a slower rate.

Specialist pelvic physiotherapists are usually in demand and booked out weeks in advance. I suggest you start looking for one immediately as you will probably have to wait to get an initial appointment.

 

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@DouginOz @PatRnFl @thudson1965 @palarino1 Thanks so much for your feedback. It is very helpful with my expectations and encouraging that things will get better with time. It really helps to know your specific timelines for improvement with continence. Helps me set realistic expectations and not worry so much.

...I was just told by a friend that the PT office where I want to go is super-busy, so I need to get on their schedule, as you suggest. I suggest others who might read this look into finding a practice early and get an appointment scheduled. I'm afraid I may have to wait now for my initial appointment, based on what I'm hearing, but I'll see on Monday when they open.

...I have had better success using online patient portals/"My Chart" when communicating with the office. Also had to call Dr on call after-hours on a weekend when having severe bladder spasms overnight (pain was worse than a kidney stone!). Good call, as I got an Rx that cleared 90% of the pain (Rx was for oxybutynin).