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incontinence following prostratectomy

Posted by edinmaryland @edinmaryland, 2 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.

jeff Marchi | @jeffmarc | 19 hours ago
In reply to @surftohealth88 "Could you please share your age, if you do not mind ? My husband is planning..." + (show)
@surftohealth88

Could you please share your age, if you do not mind ?

My husband is planning RP and surgeon said that results also depend of age. My husband is 69. Surgeon was not inclooding him in "advanced age", but I still wonder.

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It is more “how healthy is he” than how old is he. At 69 surgery is definitely an option, as long as you are in good shape.

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edinmaryland | @edinmaryland | 12 hours ago
In reply to @oldoz "Robotic Prostatectomy at Mayo/Phoenix 7 weeks ago. Catheter was removed on day 7 and had no..." + (show)
@oldoz

Robotic Prostatectomy at Mayo/Phoenix 7 weeks ago. Catheter was removed on day 7 and had no incontinence.

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thanks congratulations

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dmccarthy104 | @dmccarthy104 | 8 hours ago
In reply to @edinmaryland "thanks again I do not understand what the TENS unit is. Is it a trainer for..." + (show)
@edinmaryland

thanks again I do not understand what the TENS unit is. Is it a trainer for pelvic floor muscle rehab ( Kegels) ?
I am trying to get my own biofeedback handheld device the one I will likely get has an internal sensor (rectal probe) which my pt says is much better than electrodes on the skin. I know it is a lot of money but if it can help me get better sooner.

did you need to get the partial nerve sparing because the cancer was also outside of the prostrate?? thanks very much

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TENS unit, here's an article. https://treatic.com/tens-placement-for-ic-help-bladder-urgency-and-frequency/

I got the partial nerve sparing out of caution as the Gleason 8 was bulging on the right side of my prostate. Post op pathology showed negative margins. So far my PSA's have been non-detectable.

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1 reply
chippydoo | @chippydoo | 7 hours ago

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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1 reply
edinmaryland | @edinmaryland | 5 hours ago
In reply to @chippydoo "One thought that comes to mind is you have been very active which is great for..." + (show)
@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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This is very very helpful chip
I love doing things.. As soon as I try things like gardening or exercising my mood immediately climbs, then five hours later I get slapped across the face.
I am optimistic, hopefully, RARP keeps the cancer at bay. The odds seem to be that I will get better with time and if not there are options. I had no idea this would be months and months though

I am really pushing anyone who might be able to help me to give me some tips, to make sure I am doing the right amount of exercise, kegels, bladder training and the like. I really want to do this right
thanks to everyone for replying and keep that mountain biking up.
I used to cycle a lot but on roads and flat trails, I can do big mileage but the ups and downs of mountain biking is over my head

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edinmaryland | @edinmaryland | 5 hours ago
In reply to @dmccarthy104 "TENS unit, here's an article. https://treatic.com/tens-placement-for-ic-help-bladder-urgency-and-frequency/ I got the partial nerve sparing out of caution as..." + (show)
@dmccarthy104

TENS unit, here's an article. https://treatic.com/tens-placement-for-ic-help-bladder-urgency-and-frequency/

I got the partial nerve sparing out of caution as the Gleason 8 was bulging on the right side of my prostate. Post op pathology showed negative margins. So far my PSA's have been non-detectable.

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I am so glad your psa is non-detectable.. I appreciate the article and am going to ask my pt for her opinion about it.
She told me to stay away from trainers but this is something else
thanks

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surftohealth88 | @surftohealth88 | 4 hours ago
In reply to @edinmaryland "I am 71 just had RARP in January I tolerated the surgery well- and it went..." + (show)
@edinmaryland

I am 71 just had RARP in January
I tolerated the surgery well- and it went well. I think my surgeon would have liked me to leave the hospital the next day but I spent two days in the hospital ( day of surgery and the day following surgery) I was sort of beat, my shoulder really hurt ( they pump you up with gas (carbon dioxide I think) to make the surgery better so the gas gets trapped in your shoulders I also had seven holes in my abdomen and was tired and sore all over and had a catheter. I really needed the second day.
I am in reasonably good health however I have to keep reminding myself that as we age it really does take longer for things to heal.
If your husband's best bet is to get the prostrate removed I would not let being 69 get in the way
I am also happy to share anything else with you that I went through I wish you and your husband good luck

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Thanks Edin for replying and giving me all details and thanks for offering to help in the future < 3.
I am wishing you complete resolution of incontinence in very near future. I know that 3 months feels like long time but most articles and papers state that when incontinence is present it takes on average about one year to see actual resolution of symptoms . You are already doing PT and I am sure that it will improve with time, just try not to carry really heavy stuff and doing really tasking manual jobs until you heal completely. Laparoscopic surgery weakens abdominal muscle and pelvic floor and some patients are prone to developing hernia after RP. Be gentle to yourself for just couple of more months :), do light activities - mulching and digging are not ;), I know since I garden.

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1 reply
giantaxe | @giantaxe | 3 hours ago
In reply to @surftohealth88 "Could you please share your age, if you do not mind ? My husband is planning..." + (show)
@surftohealth88

Could you please share your age, if you do not mind ?

My husband is planning RP and surgeon said that results also depend of age. My husband is 69. Surgeon was not inclooding him in "advanced age", but I still wonder.

Jump to this post

I'm 69 and had a RARP a month ago. I started off using three pads during the day and one at night. I now use one during the day (which ends up being almost dry at the end of the day) and one at night (which usually is dry in the morning). I started doing kegels about two months before surgery and am physically fit.

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1 reply
edinmaryland | @edinmaryland | 2 hours ago
In reply to @surftohealth88 "Thanks Edin for replying and giving me all details and thanks for offering to help in..." + (show)
@surftohealth88

Thanks Edin for replying and giving me all details and thanks for offering to help in the future < 3.
I am wishing you complete resolution of incontinence in very near future. I know that 3 months feels like long time but most articles and papers state that when incontinence is present it takes on average about one year to see actual resolution of symptoms . You are already doing PT and I am sure that it will improve with time, just try not to carry really heavy stuff and doing really tasking manual jobs until you heal completely. Laparoscopic surgery weakens abdominal muscle and pelvic floor and some patients are prone to developing hernia after RP. Be gentle to yourself for just couple of more months :), do light activities - mulching and digging are not ;), I know since I garden.

Jump to this post

Thanks so much surftohealth
I really have scaled back and the little gardening I have been doing is nothing compared to pre-surgery.

However, you are really correct, I need to back off. I nkow this because when I do even a few little things, i pay for them later. Right now I had two little ones over most of the day and my pelvic floor muscles are rock solid (hypertonic I think)

thanks so much for the encouragement and reality check

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1 reply
surftohealth88 | @surftohealth88 | 2 hours ago

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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