Incontinence After Prostatectomy Surgery

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@MrCatman

In my case I am taking Chemo pills ( Erleada ) and have been for the past 4-5 months. But I'm also getting hormone injections every 3-4 months, so it's hard to tell which one my be causing the very mild return of incontinence. I still don't have to use any pads unless I know I'm going to be so active that I just put one in to be safe. I lean towards the hormone therapy doing the most damage based on that fact that the hormones relax your muscles more.

That's just my thoughts and nothing professional about them.

 

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ThHudson
Thank you for the information on the kegel therapy.
Is sounds like it would be worth it just to make sure we are doing it properly.
Why aren’t these ideas just something that should be part of the suggestions given by the surgeon or his assistants.
I’ve learned more here and from personal research than I did from the Mayo Clinic.
I had knee replacement a few years ago and the therapy was just part of the recovery.
Someone should produce a pamphlet on what to expect, options available and ideas or solutions for common issues that arise.
Won’t be a best seller but sure would be handy.
There is so many ideas in this forum but not necessarily easy to find.
I’m still looking for the magnifying glass people reference.

 

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Hi, I’m a newbie to this forum, and happy to have found it. My reference point: I’m 73 y.o, had robotic radical prostate surgery on 11/9/20. My PSA was 14 prior to surgery and last week was <0.1. I requested nerve sparing and have no E.D. I should be happy for 2 out of 3 successes, no cancer, no ED, but the incontinence drives me crazy. I had no continence issues prior to surgery. In fact, I had what might be described as a cast iron bladder. Now, It’s a bit depressing, I’m leaking about 30%-40% of all output. I have been logging everything in order to detect signs of an improvement trend and to identify what works and what doesn’t. I’m doing my Kegel exercises as well as daily 90 minutes of aerobics and weight training. So far, I’m seeing no downward trend in leakage.
So, I have a few questions. I take and ACE inhibitor Enalapril for hypertension. Does anyone know if this is associated with UI problems? Is weight a factor in UI. My BMI is 27.3 which classifies me as overweight. Has anyone found that shedding pounds helps UI? If I crank up the exercise, reduce calories, I can lower the hypertension to the point I may be able to reduce the Enalapril dosage ( I’ve done this in the past) and possibly reduce pressure on my bladder. I’m curious if anyone knows or thinks that this might help the UI.

 

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Hi @RustyNCrusty
Iam in a similar situation had my surgery in October 2020 take ace inhibitors
I leaked very badly initially but have noted I seemed to have turned the corner at three months I have gone from 6 pads a day to two and from 400 mls a day to 30 mls (this change was over about three weeks)
I walk plenty do kegel exercises three times a day
It started getting better in the mornings and now has extended to afternoons and then evening.
I had a large prostate about 100 gms and my surgeon thinks that because of this my sphincter had little to no work to do for years and now it will take longer to build up strength which seems to make sense.
I don’t believe that the ace inhibitors make any difference and I’ve never seen or read anything that suggests it does but apparently doxasosin does which I was on pre surgery to help alleviate enlarged prostate , no longer required
It seems the length of time it takes to recover your continence varies greatly from person to person. Hope this helps

 

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@RustyNCrusty and @julianth Welcome to the forum.

Use the magnifying glass to the upper left to search the forum post. The search requires 4 or more characters. The advance search will allow you to search thread titles or post within a thread.

I am at 19 weeks, 56, walking 2 miles 5 days a week. Doing my kegels and going to Pelvic Floor Physical Therapy where they doing electro stimulation of my lower bladder to help the nerves grow / activate. I have seen a 20% improvement.

This forum has helped me see more realistic time frames for recovery - I will probably be at the 6 to 9 month range because my BMI is 30. I have lost 28 pounds in 2020 - 23 before my Prostatectomy.

My PCP / GP stated that people with a regular gym routine seem to recover faster - i.e. squats, setups, thigh work and lower abdomen to build the muscles that support the pelvic floor muscles. Many people find walking to be the best for them (and me).

 

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Hi @julianth and @thudson1965

Thanks for the feedback, and details; encouraging and very much appreciated. Looks like I need to add patience to the list of things I need to work on.

ACE inhibitors are associated with dry coughs resulting in stress UI, here's a link:clickable text
Only after seeing this did I finally make the connection between my cough and the med.

Thudson1965 you mentioned that you will be at the 6-9 month range for recovery due to a BMI index of 30. That's interesting. How are you making that estimate based on your BMI?

 

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First off, I'd like to thank everyone for posting here. This has been very helpful for me. I am 54, now about 10 weeks post robotic radical prostatectomy. I had a major complication in that my anastimosis broke open (my bladder was leaking into my abdomen). So I ended up having a second procedure where they put stents into my kidneys to largely bypass my bladder. I had to sit around with _three_ tubes coming out of my penis for six weeks. Worst six weeks of my life. Anyhow, I finally healed up and had the tubes out, and remarkably my incontinence is minimal. I use one Tena guard pad in a 16 hour day and it's nowhere near wet, although clearly a few drops come out when I sit down, etc. (I can feel this happening). At night I wear a depends and I leak a little more a night, maybe 20ml. All in all considering the problems I had after surgery I'm optimistic about the incontinence. The other problem I had was that my bladder was completely collapsed for six weeks, so after the tubes came out I could only hold about an ounce of urine in my bladder, which meant I was peeing ten times a night. However, I've been slowly training it up and it can hold about 120 ml now (I think a normal bladder load for most people is around 200-250 ml). My PSA is less than 0.1 and I had no spread (initially Gleason 7 - 3+4) despite the fact that the MRI suggested spread, so I'm very happy with that.

Erectile function is a little more disappointing. I was fully functional before surgery. Now, I can get an erection, but only about 60% at this point, but it's not enough for penetration. I'm going to try viagra later this week and see if I can get to a functional point. However, since I'm not even two weeks from having my stents and catheter out, I'm optimistic the ED can improve more. Is there anyone out there who's seen improvement over time? (months or years)? Thanks!

 

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I’m 6 months post radical prostatectomy.62 years old. Wearing 1 pad a day and none at night. Walking has helped the most with continence and overall mental and physical fitness. No progress with erections though. Neither viagra nor pump has helped. Back to my urologist in a couple of weeks for scheduled visit. Will be a topic of discussion. Good to hear your recovery is going better now. I’m convinced that recovery for all who have gone through this is different for each and takes quite a bit of time. We’ve gone through major surgery and in the big picture, they haven’t been doing this for that many years. Not a lot of long term data yet. Hang in there!

 

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Just turned 60 and am 8 months post radical prostatectomy. Leakage still an issue but finally seeing a wee bit progress. Leaking about 50ml a day, mostly in the afternoon. Walk 2 miles every morning and bike about 30 miles or more a week. ED still an issue, hope it gets better. I did have a very enlarged prostate for at least 5 years which caused issues which may contribute to my slow/lack of progress. Did not find cancer until last year and it seems caught early as bloodwork has been great and no other treatment besides surgery has been needed. Hoping leakage continues to slow/disappear. Would love to hear from others who finally stopped leaking after a year or so as it has discouraged me quite a bit.

 

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I am new to this site had prostate and lymph node removal on Fen 05/20.pray was 12.8 prior to surgery and is now undetectable..I am still incontinent use two pads a day and it is 13 months after surgery..morning and night is pretty good...afternoon and evening leak especially when lifting or kneeling down on one knee..Doctor today suggests a sling to help with incontinence,no promise that it would completely fix the leakage...would like to hear from others that have had the procedure to know if it helps ,or will it be just another frustrating procedure...thanks...william

 

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Forgot to mention 68 years old and it was larascopic surgery so no nerve sparing.also the sphincter valve damaged during surgery..everything they said before surgery sounded so positive only 10% have incontinence...not so great if you are one of them...I am thankfully that I am cancer free so far and feel really healthy ..it is just frustrating to leak...

 

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@William Welcome to the group.

There has been a couple of people who have posted.


You can use the magnifying glass on the middle left of the screen to search. Must be 4 characters.

You might also want to use the advanced search for sling, clamp,

artificial urinary sphincter (AUS) - search artificial and sphincter

Log In To Continue | National Association for Continence

forum.nafc.org

Log In To Continue | National Association for Continence

forum.nafc.org

Log In To Continue | National Association for Continence

forum.nafc.org

I am using the Lunderg Confidence Clamp (penile clamp) https://lunderg.com/incontinence-clamp

Log In To Continue | National Association for Continence

forum.nafc.org

 

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Hi
I’m 62 and was diagnosed with cancer earlier this year and had an open radical prostatectomy on October19th and the catheter removed two and a half weeks later.
I was expecting some incontinence as that was discussed as a side effect, and had read enough to know that this was an expectation, but was not prepared for total incontinence, except when lying down or sitting, which has continued now for almost 3 months post op.
Have been doing the Kegel exercises every day and walking every day. I think that I am experiencing a slight improvement in the mornings over the last week as the first pad will last 4 hours instead of 2 but past midday its full-on leakage. So total pad usage of 6 a day
I do find that I do not leak when sitting or sleeping other than stress incontinence if I forget to tighten the pelvic floor. But if I tighten and stand up, I don’t leak but as soon as I relax its a flood. Toilets are not always close enough at work.
I am due back to the Urologist at the end of Jan to find out hopefully what is going on. I have had a zero PSA result back so am very grateful for that, but this incontinence is very trying! I was getting quite depressed about it as it didn’t seemed to fit in with what was published, there is always mention of stress and or urge incontinence, I do have stress incontinence as expected but have never got an urge to go just a warm feeling as it leaks out, this never seems to get a mention in articles, though having just joined this forum I am reading about similar experiences which in some way is comforting as you begin to feel that your on your own, and the so called professionals I see just say that my condition is disappointing!(Yeah tell me about it!) Since there must be people out there with similar experiences, I would love to hear that it gets better, and if it doesn’t what then?
Thank you for reading,
A very damp Kiwi

 

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Hi Mate. I'm 61 and had the same op at the end of Jan '20. I'm a fit 61 year old and thought it would be a breeze. Be patient. I'm still leaking when walking around and moving, but not when laying down and sitting. My saviour has been cycling as I can do this without leaking. Perhaps try this for exercise. I'm waiting now for tests and possible op to get an artificial sphincter. Good luck and best wishes Russ

 

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This post has great information and is a resource for people starting their journey to continence.

IF YOU HAD PROSTATE REMOVAL SURGERY / radical prostatectomy, please share your who journey including significate changes.

I am Terry, my prostatectomy was Sept 2020, I am 24 weeks ( 5 & 1/2 months ).

I walk 2 miles 5 days a week in 35 minutes. I do kegel at a set of 10 three times a day. I had 7 weekly pelvic floor physical therapy session which focused on measuring the strength of my kegel (improved, but only fair) and electro stimulation of the bladder neck muscle and pelvic floor.

I had a significate reduction in pullups from week 2 using 12 to week 5 using 4. The mainly reason for the reduction is reduced liquid intake and using pee cups when I stand up at home.

At week 20, I had feeling to push pee out, but not to keep it in. At week 23, I can significantly demission the stream, but not stop it completely - major progress for me and probably due to the pelvic floor therapy session.

I am leaking about 30 ounces or 25% of fluid intake. I drink 12 ounces of coffee each day. No sodas.

I used a penile clamp for Jan and Feb 2021 to give me a break from the leakage. It has been tough not using the clamp because of doctor visits and shopping. I get out of my car and release 4 ounces into a pad.

The past 7 days has been especially tough for me. My leakage is up because I have been doing yardwork and preparing the vegetable garden.

For penile rehabilitation, my urologist started my on daily cialis. At 8 weeks he suggest the Bathmate Hydro vacuum erection device (penis pump). I have and use the Bathmate HydroXtreme (the extreme is a hand pump which makes it a lot easier). I have found it easier to use while sitting on the side of the tub. I also bought the Vacurect pump, I did not like the tightness of the rings to maintain an erection. My purpose is rehabilitation so it is fine for that. Basic goal is to stretch out the penis and get blood flowing into tissue. The Bathmate instruction are 3 minutes of pump and hold, 2 minutes of massage, then repeat 2 more times for a total of 15 minutes. On March 24, 2021, I will receive my first trimix injection into my penis. Typically it takes 4 to 6 injection to get to the right dose over a 2 to 3 week period.

I hope others share their journey.
Terry

 

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@Russ
Thank you Russ, I'm now at 5 months and only wear a pad during the day, still leaking a bit in the afternoon on but probably only 30 ml or so. Recently had a UTi but is resolved after antibiotics, and came off the solifenacin succinate which wasn't doing anything useful, may have contributed to the UTI. Did start riding the bicycle with a larger gel saddle with a hole in the middle (very comfortable) should have got one of these years ago! Am still going to physio every few weeks and interestingly she has indicated that the pelvic floor muscles are probably in good shape but the issue is more about your mind associating clenching this muscle when you say stand up , cough, strain etc, so its a case of doing something to associate with as you repeat the exercise, so I cough as I tighten the muscle. As with everything we learn in life , if we repeat it enough the body takes over this process automatically. At least that's the theory. Up until now I've only been exercising without association, although I do find myself tightening the pelvic, when I go downstairs or coughing. Sneezing I have found the most difficult to not wet myself when it happens! I now consciously clench as I get up, even though I didn't seem to need it. My BMI is just under 24 so not supposedly overweight, my prostate was 3,5 times normal size so quite large and I believe maybe contributing to my slow progress. Hope this info is useful to people
Thanks
Jules

 

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Hi Jules. I'm pleased things are moving forward. I now go in for tests on the 19th April, which will hopefully shine a light on the way forward. Nearly 14 months now so really looking forward to getting things moving. Patience is the key! Best wishes Russ

 

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I have a really long story since it's been 16 years since my surgery. I'm now 67. I used to use one pad a day for several years, then went to two and now I'm at 3. I like to be active, but I'm so bummed out about having to change pads so often. I'm glad I'm here and life could be worse, and I'm willing to go to any doctor or hospital in the country who can help or fix. Over the years, I've found that all urologists are ready to cut (operate). Is there anyone out there who has had the artificial urinary sphincter? I'd like to hear your story. I'd also like to find out how often that surgery fails. Thanks for any help you can pass on.

 

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I would be interested too! I have tests on the 19th April to see if having an artificial sphincter is the correct next step for me. I would love to hear from anyone who has had this procedure. Russ

 

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I'm now 9+ months post total robotic prostatectomy, PSA levels perfect but the leakage! So I'm 60, 6'0", 200lbs and relatively healthy, Dr. felt everything would go well and I'd heal right up, I was actually home about 3 hours after I woke up from my procedure and felt great all thing considered. I had my catheter removed a week later and from the very beginning did not leak at all at night.

As far as the day was concerned I leaked about 4-6 pretty soaked pads a day, but that was expected. I did kegals regularly and started physical therapy about a month out. After about 3 months I was kind of ready for shields and this is where it gets interesting, that lasted about 2 days then suddenly I was back to 4 pretty soaked regular pads a day. This went on for about two months at which time I started weighing my pads. So about at 5 months I was leaking about 150+ ml a day or about 6oz, very frustrating. At about 8 months I suddenly saw a vast improvement, suddenly I'd leak nothing or next to nothing until around noon even if I went on my 2 mile walk. I ride my bike for 25 miles and still i'd leak maybe 7ml (1/4 oz). In the afternoon, I'd leak another 15-20 ml, but that was less than an ounce and I was finally very happy. But once again this was short lived, about two weeks ago, I suddenly started up again and now I go for a walk and when I come home and measure, I find I've leaked 20+ ml, then if I do anything like walking after 11:00 am or so, I start leaking. At the end of the day, I've leaked about 80-100ml or about 3-4oz, an improvement overall but I feel I take three steps forward two steps back. I'm so frustrated, I find myself walking very gingerly just in an effort control the leakage, but to no avail. I just returned home from a quick 30 minute trip to Costco and measured 45ml in just that trip. Very depressing 9 months out. I'm out of hope and feel it is what it is. I am grateful to be free of cancer, but had hoped I'd be one of the 95% who's incontinence would be resolved by now, but no. I really would like to hear from someone who had leakage issues for more than a year and is finally dry.

So here I am, 9+ months out still using regular pads, at least 2 a day, walking gingerly and careful in everything I do. Sleeping and sitting is not an issue, I exercise, do kegals (not sure they're helping) talk to my physical therapist at least once a month (he feels, in spite of everything I'm "doing great.") Hoping to talk to the dr. soon and see what other options I may have, but I'm sure I'll need to give it more time. Oh, and don't get me started regarding erectile dysfunction. Sorry some of this is just ranting due to frustration.

If you look at my old post, you can see some of my struggles.