Why is my incontinence NOT healing after prostatectomy?

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Why is my incontinence NOT healing after Prostatectomy? It has been 9 months now. Doing kegels, working with PT. Both the surgeon and his incontinence "expert" are 100% clueless (or hiding something).

Do any of you happen to know a doctor who is really good in this area?

Or anyone researching the problem?

I can't believe that such a life destroying disease has no one researching it at all.

Thank you.
Art

 

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Art,

For a very high percentage of us recovering from RP the recovery process is slow but measurable over time.

Then there is the small percentage that have persistent incontinence issues.

I recognize that you are 9 months post surgery and not where you think you should be.

If your current urologist is unable to provide a diagnosis on your condition then seek out another urologist.

There are treatments and surgical procedures that can be explored as a remedy for your situation.

 

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Why is my incontinence NOT healing after Prostatectomy? It has been 9 months now. Doing kegels, working with PT. Both the surgeon and his incontinence "expert" are 100% clueless (or hiding something).

Do any of you happen to know a doctor who is really good in this area?

Or anyone researching the problem?

I can't believe that such a life destroying disease has no one researching it at all.

Thank you.
Art

@artmaltman

A lot of people in this forum have talked glowingly about urethral sling surgery. You might discuss it with your urologist.

 

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I feel your pain. I am two years and 12 days since my RP and I still leak. I go through 1-2 medium absorption pads per day. And I did intensive pelvic floor physica therapy, exercise daily (3 mile walk). However, I can't bring myself to consider surgery, e.g., sling or artificial urinary spincter. I still tell myself I am getting a little bit better every day just to stay positive. At least I can get an erection (not like before but still an erection) twice a week.

Hang in there and I hope you get dry wicked fast!

 

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My surgery was Aug 2019. I still leak. I'm a bit off and on. I can have days where I seem to have it controlled and then I get spotty. Getting out of vehicles, coughing and sneezing are definite issues. I use small female pads all the time. I can go a few days on one. I have more or less accepted that this is it. I am not considering any surgical procedures to change this. I can live with it.

 

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Artmaltman…could you give a little more detail? Are you going through mutiple heavy duty pads each day?

 

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Hi @artmaltman, No matter what type of surgery someone has, different people have different rates of recovery and/or return to normal function.
So if one person needs six months to completely recover, another one who has had the same type of surgery may require 12 months and still another who has had that surgery may just need four months. It all depends on each individual's overall health and how each person reacts to things like surgery.
Do remember that surgery is an invasion of your body and different people react differently.
A good thing to consider is mild exercise such as walking each day. Layout a course for walking, like one mile for two weeks and then 1.5 miles for the next two weeks. Do ask the doctor about exercise.
If you do not really trust what your surgeon and urologist say, then you would be definitely wise to find another doctor. Check credentials to see if they are board certified in their specialties. Ask people you know for recommendations. Or check with a major hospital or clinic in your area. That's important because if you think your doctors are "clueless" or feel that they may be hiding something then that is a red flag that tells you to find somebody you can trust. It's not an easy thing to do but it will make all the difference in the world to find a doctor you trust.

 

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Art...,
Since my prostatectomy in 2010 I have been a moderate leaker, daytime mostly. I can assure you that life is not destroyed by having this disease or procedure, assuming the cancer has not metastisized. Until one accepts it as a medical condition, not unlike bad knees, it seems so, I understand (after some time). Yes, life is not same; it's just different, as you manage the leakage however you choose. Please know that you have lots of company regarding this incontinence issue; and, also, know that women have twice the incidence of this that men do...for several reasons.

If interested, I and my engineer partner have a solution, developed after five years of research and testing. It's an soft external sleeve-like aid that comfortably puts upward pressure on the urethra, restricting flow. It can actually be worn 24 hrs a day, if need be. We are patent pending at the moment, but it's not yet for sale.

With a backup liner for the occasional moments of stress, there just is not a major leakage problem. We are still accepting volunteers who want to give it a try and provide us feedback. Info is available, which will give you a complete understanding of how and why it works. Send me note at amhelp@comcast.net

 

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Art...,
Since my prostatectomy in 2010 I have been a moderate leaker, daytime mostly. I can assure you that life is not destroyed by having this disease or procedure, assuming the cancer has not metastisized. Until one accepts it as a medical condition, not unlike bad knees, it seems so, I understand (after some time). Yes, life is not same; it's just different, as you manage the leakage however you choose. Please know that you have lots of company regarding this incontinence issue; and, also, know that women have twice the incidence of this that men do...for several reasons.

If interested, I and my engineer partner have a solution, developed after five years of research and testing. It's an soft external sleeve-like aid that comfortably puts upward pressure on the urethra, restricting flow. It can actually be worn 24 hrs a day, if need be. We are patent pending at the moment, but it's not yet for sale.

With a backup liner for the occasional moments of stress, there just is not a major leakage problem. We are still accepting volunteers who want to give it a try and provide us feedback. Info is available, which will give you a complete understanding of how and why it works. Send me note at amhelp@comcast.net

 

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Sent PM about volunteering. Hope it works

 

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Artmaltman/Danznman I had my surgery March of 2019. I have had zero improvement with the incontinence. I had physical therapy, bought two tens units, used clamps but nothing worked. About 8 to 10 pads a day. I'm active and work full time. I also have total ED. Tried the pills and pump. I was 68 at the time of my surgery.I think it depends on how much damage was done during the surgery. How much tissue was removed. I wish you both success going forward.

 

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gnp10351,

Thanks for sharing. Hang in there and I hope things get drier and better for you.

 

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Posted on a previous forum regarding my experience with incontinence…

I am ‘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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Artmaltman…could you give a little more detail? Are you going through mutiple heavy duty pads each day?

Originally 5 to 7 heavy duty pads per day.

Now after 15 months typically 2 heavy duty pads per day. The leaking patten is the same just not so much.

I do drink less water and I am taking 20mg daily of imipramine prescribed by urologist, which also helped.

Kegels and core exercise daily.