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.

anosmic1 | @anosmic1 | 1 day ago

In reply to @edinmaryland "what meds did you get?? thanks much" + (show)

GH en samples of Gemtesa and that seemed to help. United Healthcare rejected an Rx for that. They approved Mybetriq but the cost was $600 a month. I now have a generic.

oldbell | @oldbell | 1 day ago

No medication would stop the leakage so I was informed that I would have to wear pads for the rest of my life but after 4 to 6 plus in 24 hours I finally was informed about the PROACT and it is working DR. informed me that he was getting 80% results so I said lets do it. At this point I am really happy can walk 10,000 steps with the same pad and was going thru 4 or more.

edinmaryland | @edinmaryland | 1 day ago

I really am so glad that you bring this up. It seems maybe three so far on this list have used the balloon type devices and report good results. This seems like a fair back up plan if my incontinence does not resolve within the first year.

thanks for letting me know

chippydoo | @chippydoo | 1 day ago

In reply to @laccoameno5 "I do hope you inform your players about PC and the importance of regular PSA tests...." + (show)

Nope, it would go over their hormone raging heads and the way the world is today one might get called out for being inappropriate. I do talk about it to fellow officials and some of the coaches that I have relationships with. Many ask questions and only one made a snide comment about me no longer being intact. Showing his ignorance.

edinmaryland | @edinmaryland | 1 day ago

what a stupid remark./ Who has any control over cancer??

You have more guts than any of those a******* ses and more intergity

laccoameno5 | @laccoameno5 | 22 hours ago

In reply to @edinmaryland "what a stupid remark./ Who has any control over cancer?? You have more guts than any..." + (show)

Stupidity and ignorance are so deadly. With those who will not listen fanning the flames. Same are struck dumb in their later years as they wonder WTF happened when they are diagnosed with PC .Very sad indeed.
SW please keep trying to get the word out about PC.