incontinence following prostratectomy

Posted by edinmaryland @edinmaryland, 5 days ago

Three and half months out from RARP (Jan 15, 2025) closer to three if going from date catheter removed (Jan 29, 2025) . I have seen some progress ( can sleep at night getting up once or twice and somewhat dry in the mornings, but that changes) . However stress incontinence persists, and I have periods of regression. I try to go for a walk (or two) every day. Doc advises to live my normal life and more or less deal with it. (if it does not get better in a year or so then consider other options). I am working with pelvic floor specialist pt.
I tried riding my exercise bike at one month out and then at three months out- after short workouts, incontinence is worse following both 'experiments' so i I have put that on hold.
I recently tried some gardening ( light digging,spreading mulch) incontinence gets worse and stays that way for a day or two or three. In addition to stress incontinence I experience leaking (leaking for a long time after urinating, leaking when laying down, leaking when I try to go to sleep. Doc tells me my sphincter is not closing. I am backing off any lifting and taking a day of rest however, this is very hard to sustain. Should I just not try much of anything.? I cannot work like I used to. I am not inclined to try a clamp ( I have heard on this list that they can fall off, sometimes they are painful, and I wonder if they really help)
I appreciate that everyone is different and it is hard to predict but waiting this out for possibly nine more months is hard if it turns out that way.
Anyone else have any tips for getting through this ordeal ( besides doing kegels)? especially anyone in their 70s
I am wondering about consulting with another urologist to see if there is anything that should be checked (blockage, obstruction)
Can anyone recommend someone that might specialize in incontinence following prostratectomy?

thanks much
incontinence sucks
I never had any incontinence whatsoever prior to this surgery so I do not believe it is age-related.

I have been warned not to try 'short cuts' such as the Emsella chair or stimulation devices as these have not proven effective and some have reported problems with these.

It may be that I have to wait it out and coming into month four might be early but these past 14-15-16 weeks have been very hard. especially when I hit setbacks. Any tips??

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I have worn Tena pads for men the overnight one for the last five years had prostrate removed 21 years ago and have worn pads all that time except leakage just seemed to get worse the longer I wore them after surgery. This March I had ProACT surgery where they place baloons filed with saline at the opening of the bladder and I went back for my first adjustment two weeks ago, I was using 6 to 8 pads in 24 hours and now I am down to one pad in 24 hours. I am really pleased with the operation and I had it done at Mayo Phenix. No more wet pants and NO more looking for restrooms to change pads.

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@surftohealth88

Since everybody is mentioning pads - are those like "Tena" pads for man ?
What absorbency is the most appropriate for after surgery ?

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I go to RealCanadian Superstore or to Shoppers Drug mart and get the 52 pack for under $15 called MEN'S GUARDS

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@chippydoo

One thought that comes to mind is you have been very active which is great for your over all health. I know all of this is inconvenient and might come with embarrassment but my thought is don't let this disease take the rest of you. So important for us to stay physically active and if we don't all kinds of negative health issues can creep in at our age. I have bowl incontinence due to radiation side effects that Imodium can't overcome. I mountain bike in our state forest 3-5 times a week and carry TP in my Camel Back. I also have bladder urgency and carry a urinal in my vehicle if I can't make it to a bathroom. I know somewhat graphic but hell bent on living my fullest life rather than death by easy chair. I was a sports official and back on the field 4 months after RP. I was the only one that knew I was leaking into a pad. Of course I didn't like it, but loved my vocation more and the second chance to be a full participant in life. Life with PC is a gift. I encourage you keep living your fullest life even with a pad or incontinence underwear. Keep pushing the doc's for a solution. Best wishes.

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I have become very skeptical of what oncologists have to say. It is O.K. for Drs' to say "we just don't know" They should do this more often, My local support group has been WAY more accurate as to treatment results and their original diagnosis as well. As PC sufferers we not only have to deal with our horrible state but the loads of false info as well. "Side effects from Lupron are rare" which is total B.S. That is a quote from a local oncologist WTF! It is really difficult to live my "fullest life" feeling like a bad case of the flu with the worst head cold ever. All the time.We are still eons away from getting publicity out about PC and how common and life ruining it is. High school health class would be a good place to start, ya think?
SW

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@laccoameno5

I have become very skeptical of what oncologists have to say. It is O.K. for Drs' to say "we just don't know" They should do this more often, My local support group has been WAY more accurate as to treatment results and their original diagnosis as well. As PC sufferers we not only have to deal with our horrible state but the loads of false info as well. "Side effects from Lupron are rare" which is total B.S. That is a quote from a local oncologist WTF! It is really difficult to live my "fullest life" feeling like a bad case of the flu with the worst head cold ever. All the time.We are still eons away from getting publicity out about PC and how common and life ruining it is. High school health class would be a good place to start, ya think?
SW

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Haha have to agree. My SO was encouraging me to officiate High School lacrosse and not give it up prior to treatment. I got the association rolling for preseason and then said my good byes. Radiation came next which was horrible along with ADT which I can't say is as horrible as expectations but couldn't imagine tolerating screaming coaches and fans. I will stick with mountain biking on our state forest which is peaceful and I can set my own distances and intensity.

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I will be 6 months after surgery next week. Part of my bladder was removed during RP so I may be the one off here. I’m Gleason 9 4+5. I was using 6-8 Depends a day until 3+ months when I got both an Rx and physical therapy. I’m down to about 2 Depends per day and smaller pads when I’m working from home. Physical stress makes it worse including golfing. I’m much improved recently but still take precautions like having an extra Depends in the car.

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@anosmic1

I will be 6 months after surgery next week. Part of my bladder was removed during RP so I may be the one off here. I’m Gleason 9 4+5. I was using 6-8 Depends a day until 3+ months when I got both an Rx and physical therapy. I’m down to about 2 Depends per day and smaller pads when I’m working from home. Physical stress makes it worse including golfing. I’m much improved recently but still take precautions like having an extra Depends in the car.

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Which drug helped you reduce your incontinence?

Was it Myrbetriq or Gemtesa? I have found that Myrbetriq Has worked incredibly well for me, Though I never use more than one pad a day, it really has reduced it to an almost dry pad. Took about two months of taking it before it worked the best.

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@chippydoo

Haha have to agree. My SO was encouraging me to officiate High School lacrosse and not give it up prior to treatment. I got the association rolling for preseason and then said my good byes. Radiation came next which was horrible along with ADT which I can't say is as horrible as expectations but couldn't imagine tolerating screaming coaches and fans. I will stick with mountain biking on our state forest which is peaceful and I can set my own distances and intensity.

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I do hope you inform your players about PC and the importance of regular PSA tests. You have a great and rare opportunity to make a huge difference. Please don't miss it!

SW

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@anosmic1

I will be 6 months after surgery next week. Part of my bladder was removed during RP so I may be the one off here. I’m Gleason 9 4+5. I was using 6-8 Depends a day until 3+ months when I got both an Rx and physical therapy. I’m down to about 2 Depends per day and smaller pads when I’m working from home. Physical stress makes it worse including golfing. I’m much improved recently but still take precautions like having an extra Depends in the car.

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what meds did you get?? thanks much

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@jeffmarc

Which drug helped you reduce your incontinence?

Was it Myrbetriq or Gemtesa? I have found that Myrbetriq Has worked incredibly well for me, Though I never use more than one pad a day, it really has reduced it to an almost dry pad. Took about two months of taking it before it worked the best.

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I was given a sample of Gemtesa. United healthcare rejected a Rx for more of that. They approved Mybetriq but it was $600 per month. Now I have a twice daily generic.

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I am taking gemtesa. I have Medicare and CIGNA and pay about $35.00 I think (copay I know it is very expensive)
I do not know how to tell if it is working. I still have both stress and urge incontinence. I suppose I could stop it and see if my symptoms worsen but I am not inclined to do that.

Anyone else have experience with Gemtesa??

Thaks

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