Prostatectomy- anybody back to normal?

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Has anyone gotten back to their pre-surgery condition with incontinence and erectile dysfunction? 7 weeks out it seems like a pipe dream (lol), but doc says I should regain full continence and 80% ED, which meds should help to be better than that.

Maybe those folks don’t visit here anymore, but I hope there are some success stories out there.

 

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I am a year out (Oct 15) InContinence has gone from no warning at all the first month post to adequate warning if close to a lavatory. I can go for hours if I don't move around, but getting up and moving usually leads me to a lavatory right away. Jury still out on Erectile disfunction. No where near where I was before but I am 75, So I don't worry about it. I found Prosta Genix, a Godsend both before AND after Surgery. Still take 3 tabs a day. Good luck, and do LOTS of Kegels.

 

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Sorry, not a total success story here. Had the operation in 2005, followed by radiation and have suffered with incontinence ever since, though not as severe as some. I've fallen into a routine of buying Depends briefs, and a liner. Now, 16 years later, it's no better but no worse, and I feel I'm coping quite well, including 6 hour flights, performing in front of people, etc. It's not perfect, but I don't want to consider the consequences. Oh, I'll be 81 in April...

Bo

 

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8 years after surgery and use pads during day briefs at night. Have good days and bad. As far as ED. Everything works great. Although it took about year and a half to get there. I'm 56. Had the surgery when I was 48. As far as incontinence goes I'm in a much better place than presurgery. I'd rather wear a diaper than not being able to pee. Also I feel like I did when I was 10 good powerful stream.

 

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Has anyone gotten back to their pre-surgery condition with incontinence and erectile dysfunction? 7 weeks out it seems like a pipe dream (lol), but doc says I should regain full continence and 80% ED, which meds should help to be better than that.

Maybe those folks don’t visit here anymore, but I hope there are some success stories out there.

Not me, sadly. I'm almost at the 4 month mark post-surgery, and there's been no change in my ED. I'm still hopeful I will regain erections. I tried both Cialis and Viagra, and not only did I not get benefit but they also caused intolerable side effects. I tried Tri-mix and ended up in the ER for priapism, which was actually a positive (if not painful) sign that blood flow to my penis was still possible. So, I'm just going to give it more time. My next appointment is not until April, so that should be plenty time to see if my ED resolves on its own - though I am aware it can sometimes take up to 24 months before one can recover.

My urinary incontinence has gotten much better over the past several weeks, I'm happy to report. I have not had an accident in bed in quite a while now, and most days of the week I can go without a change of underwear. I still take precautions and wear pull-ups as well as use a puppy pad on my bed - which is always dry in the morning.

So, in short, I am pretty happy with the improvement I see, which encourages me even more to be patient with my body's recovery process.

Lastly, I was skeptical of kegels at first, but I do think they have made a difference in my incontinence.

 

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Looks like everyone is a little different. I’m 54 and had no symptoms beforehand. A friend had this 3 years ago about my age and he’s getting an implanted pump next month. I’ll keep crossing my fingers and doing my kegals…

 

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My doc said ED was 12-18 months just fyi.

 

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3 years and 3 months post surgery and 1 yr and 8 months post radiation. I almost got dry about 10 months after the surgery in Aug 2018. After 40 radiation treatments in Feb- Aug 2020, incontinence slowly got worse. Exercises and drugs did not help. I was 1 to 2 pads per day, depending on amount of activity. I finally had the male sling surgery about 10 days ago and have been dry since sling operation. If you have mild incontinence (defined as 1 to 3 pads per day) and the Dr considers you a good candidate for the sling operation, I would strongly consider it. I had the Advance XP sling manufactured by Boston Scientific. The procedure is about 1 hour and fairly easy outpatient surgery. Recovery is not painful, but is uncomfortable. I won’t know the full effect for about 6 more weeks when I can be fully active, but completely dry so far with just minor activity.
ED is also a problem. Viagra helps but I will never be as good as before. Loss of length and girth is also a problem made somewhat worse by partial erections.
But I am still cancer free after the radiation. Thank God for that.

 

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2 years post surgery. You are at beginning. I saw a pelvic floor pt for 6 months after I was 6 months post surgery. A month ago I started Emsella treatments. This brought the leakage down to almost nothing still going down. After first 6 I was only using light pads during day. Only drips w heavy cough or workout a little more. Before I was 4-6 large pads a day. I now sleep through the night. Was up every 2 hours w urgent need to go before treatments.

 

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My surgery was Aug 2019. I still leak a bit, thus use a pad all the time. Just turned 72. I've learned to live with my situation.

 

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There's no guidebook on post-op recovery but you should not give up hope. I'm 10 months post-op and although I'm still incontinent I'm down to one mini-pad per day. I can live what that situation. I'm 73 and my potency came back a month after surgery. My mind was expecting 4-5 months of incontinency and a year or more for potency to return.

 

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I am a little over 11 months out and use one pad at night(I don’t like surprises). Funny I do better during the day than at night. No problems with incontinence or ED prior to surgery. Still no progress on theED side of things. Use a daily dose of Cialis and a stronger dose when I feel like giving it a go. Nothing seems to make a difference on that side of things. Like harrisjmh, I thank God that everything is as well as it is. I am 58 and the ED part kinda stinks, but hey I am alive, right?

 

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67 years old. Living in Perth Australia. 6 weeks post-op (robotic radical prostatectomy). Gleason 7 (3+4). Stage T2C. Gradual improvement in bladder control since op although varies day-to-day. Post-operatively, control has always been good lying and sitting. Problem is with walking. On a good day can now walk a few hundred metres before leaking starts (and continues). Considering returning to golf in a few weeks if improvement continues. Control is better in mornings than afternoons and evenings. Using 2 or 3 level 3 Tena pads per day and partial limiting of fluid intake. Have now seen physio 4 times and doing Kegels regularly. Not sure if they make any difference but will carry on just in case they do! Thinking of cancelling next physio appointment as I don’t think she has any other suggestions to offer and appointments are expensive ($150 (AUD)out of pocket per hourly session after private health insurance rebate). Post-op pathology was encouraging (clear surgical margin). Awaiting first post-op PSA in mid December. I have top level private insurance - total out of pocket expenses over $11000 (AUD). How does this compare in Australia and overseas?

 

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Other than doctor visits, I think I paid out of pocket around 1000USD. Surgery total was over 100,000USD. NOt sure if that is what you were looking for.

 

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Going on year 4 in 2 months since robotic with 0.01 throughout at 74. No leaks sleeping, but any activity brings it on. If really active, as I usually am, need 1-3 medium pads/day. Able to lift weights and do Vinyasa yoga 5-6/wk - yes need new pad after any of it. If I sit watching tv or using cell, etc., I’m all set. But rise from chair, and I spurt. Still doing keels, particularly while peeing and not holding my breath. Breathing while kegeling is important. Will never know if it’s the kegels or my body trying to learn how to cope. Not willing to do AUS surgery, because too many ifs. ED has been relatively permanent, but did start using Vacurrect device, which is bringing blood flow back to atrophied penis, shortened by the prostatectomy as well. Still enjoying life despite COVID, and hoping for more. My wish, for all of us suffers and guys in future, is for even more precise surgical procedures during prostatectomy sparing of urinary sphincter along with erectile nerves.

 

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I'm 4 1/2 years post prostatectomy combined with the removal of a large bladder diverticula. I'm still incontinent...had some issues prior to surgery. Some days I can go all day without feeling the need to pee. When I try to void, I may have a little success, but not always. Then, there are days when the urge and leaking are simultaneous. There are also times when I just start to leak with no warning. As a result, I wear tape on diapers during the day, and pin on cloth diapers at night. ED is permanent as well. I am 74 years old with other health issues that have emerged since my prostatectomy. So, being back to normal has taken on a whole new meaning. It is what it is.

 

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I am 20 months post robotic surgery. I was 68 at the time of the surgery. There hasn’t been any improvement in the incontinence or the ED. I’ve tried everything but nothing works. I go through 8 to 10 pads per day.I don’t expect any improvement in either one. It is what it is.

 

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I’m‘totally’ incontinent 5 years after surgery…just flows continually 24 hours a day…I use the Afex Incontinent System ( https://store.arcusmed.com/Afex-Male-Incontinence-System_c2.htm ) to deal with it…surgeon had trouble reattaching urethra to my bladder…should take 10 minutes but took 1 hour because my pelvic area small and difficult to work the robotic surgery causing damage to the sphincter muscle…

I refuse to have the AUS inserted because of potential complications etc..I’m 77 and retired so ED not of concern and Afex does what’s needed..all though a nuisance to living a freer existence…but better than the alternative…

 

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If something keeps occurring in countless robotic prostatectomies around the world - namely loss of sphincter, or control of what tissues are left/spared, resulting in incontinence and/or ED - why aren’t some meta analysis studies being done to consider why the results keep leaving men with such dismaying result? Is there something(s) surgeons may be able to change in their processes, to improve outcomes? Yes, the docs are focused - rightly so - on keeping us alive and cancer free, but the price we pay from these side effects are high and life-long. When I queried my surgeon at a healthy 70 yrs., as to whether the side effects would be persistent or uncontrollable, he responded, “What you, in your great condition! You’ll be ok in no time.” RIGHT!

 

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50, 1 1/2 years post robo surgery. Incontinence is little to no issues, ED still not where it should be but working on it. The success for me has been I was able to complete Ironman Wisconsin this year after being scheduled to compete in 2019. Car bike accident ended that plan, 2020 was surgery and comp,etc loss of athletic ability as well as COVID canceling race. But 2021 saw it get done, not as fast as I would have liked but got to the finish line 140.6 miles later. It is an eye opener about the impact of stress. When school (teacher) stresses me out, more leaking issues, dripping issues. So meditation and yoga have helped. Knock on wood things keep steady and the PSA stays down.