Recovery of continence following prostate removal

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Dear Folks,

I am seeking insight into the process of the recovery of continence following prostate surgery.

I’m 3 weeks post-prostatectomy (robotic laparoscopic & nerve sparing). I have been retaining urine in my bladder during sleep (or sitting) since the catheter came out (7 days after surgery), but when I am standing and active, I dribble almost continuously into a pad or diaper. I’m 68. European ethnicity. Was Gleason 7(3+4) and PSA 14 before surgery. My margins were negative.

I’m seeing a physical therapist, and she tells me I am doing Kegel exercises correctly.

I would like to have more insight into what I’m facing. I understand that the Kegel exercises are to strengthen the skeletal muscles that activate my external (pelvic floor) sphincter. I understand how this can help with stress incontinence…

But what mechanism can I expect to develop to retain urine 24/7? Are there smooth muscles involved? What can I do to encourage this process?

 

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I leaked like a faucet for 3 months, then started seeing improvement for no real reason. Went from 4/6 depends, to 2/3 heavy pads, to 2/3 drips/dribble pads. Now 9 months out I use 1 drip/dribble pad every 24 hours but still have a little urine, maybe a teaspoon or less. Still can’t make it 100% dry, it’s the cough or sneeze that gets me every darn day. Or squatting. PSA still <.01% as of two days ago, so that’s wonderful. I’m 55, everybody is different, but I’ve seen this general progression a lot on here. Welcome and good luck.

 

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I leaked terribly for five months. Then things started to taper to having a good day followed by two bad days. I am now in my seventh month and am just wearing a pad and depends underwear. I wear the pad inside tbe depends for extra insurance. But in reality I think I no longer need the depends as my leaking is down to just a dribble when I lift, laugh, or basically do something physical. I am pretty confident that by 10 months I should be pretty much over this thing I hope. But keep in mind everyone is different. And keep doing your kagels and stay positive. I know thats a very difficult thing to do,but in the end you will be ok.

 

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JR -

You are doing all the right things to facilitate your recovery. Cajunfisherman’s progression mirrors mine. Besides the actions you are taking I’d recommend adding walking to your routine. It may not seem obvious but brisk walking exercises your abdominal floor muscles. At this point in your recovery the shock trauma to your body is abating and your body is adjusting to the new normal. Walking helps strengthen those new muscles to compensate for the loss of sphincter muscle damaged or removed by the RP surgery.

Best wishes for your continued recovery.

 

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I wore diapers full time for few weeks after surgery. Things really looking up. 6 months after surgery just used a pad. Then needed radiation. After 8 weeks of radiation things still going good. Slowly over 8 years back to wearing diapers full time. I could get away with a pad during the day if I was close to bathroom, but relying on bus and sometimes go hour or two and cannot make it. Nighttime must wear diaper.

 

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You and I are experiencing the same things right now!

I had my robotic prostatectomy approximately 4 1/2 weeks ago (nerve sparing. Catheter removal was three weeks ago. I too can retain fluid in my bladder when lying down and sitting....however, when I stand, or move, the flood gates open! I'm 67, American, had a Gleason 7 (4+3)and a PSA of 10 day of surgery. My margins were also negative.

I too do my Kegel exercises daily. As someone else had stated on a previous post, I think my pelvic floor muscles could crack walnuts right now!!! I'm an avid walker and get in 2 walks each day (probably 5 +/- miles total). So far, I really think I'm doing everything right. I'm really hoping to see some sign (any sign)of improvement over the next month.

It's extremely frustrating to have too go through this process. For me, the mental challenges far outweigh the physical. I just try to remain positive and have faith that someday soon I'll be peeing in the toilet instead of my pants!

 

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I had my three-month check-up on 7-14-2022 after complete removal of my prostate on 4-12-2022. On 4-19-2022 I had my catheter removed (pulled out because it was stuck). I was totally and completely incontinent after that. I am doing the Kegel exercises every day and am now just replacing my Depends thin pad underwear in the morning. The total diaper doesn't cost much more than just a pad. My surgeon is totally confident that I will get full control of my bladder.

I did NOT have cancer but just wanted my prostate removed vs any of the other half-measures for frequent urination. I had to go to the emergency room when I could not pee at all on 2-3-2021. I started taking a generic Flowmax pill every day to buy me some time. Had a cystoscopy in November, 2021 and saw the surgeon on 12-30-2021. He agreed to my prostate removal but my surgery kept being delayed so he could do those with cancer first.

Sounds like you are right on schedule to full recovery.

 

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Hi @JRImattox;

Welcome to the NAFC. So from what I've read on here (I'm a male with bladder spasm issues; not prostate) that when the prostate is removed; you are left with less sphincters than when you had prior to the prostectomy.

With that being said "kegaling" would be assisting with building the muscle tone for what you have left to compensate for the muscle that you lost due to the surgery (at least that's what I've read on here).

I'm sorry you've had to go through this - I wish more people were aware of prostate issues as more and more men are getting diagnosed each year and if left untreated can lead to other types of cancer, etc.

Just know, you are not alone - and that we have a supportive community of men and that many do find control in there bladder issues post prostectomy. In short, there is light at the end of the tunnel.

Take care

Blessings In Christ,
Honeeecombs

 

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Yup, I concur with the others here. 63 yo wm of normal body size. 3 months post robotic radical prostatectomy. 4+3 Gleason. Scheduled for my 1st post-op PSA next week. I’ve stayed dry during the night since discharge. Light activity caused light leakage and heavy activity caused heavy leakage until very recently. Just this morning I did some heavy yard work and was surprised by how little I leaked. Progress has generally been slow and steady.

 

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Thanks for the support! Great to see what looks like a path to further continence recovery before me!

I'm 6'4" and in excellent health. Fish/vegetarian diet.

Now using using lots of diapers (absorbent underwear from Depend (L MAXIMUM); and also their pads (MAXIMUM GUARDS). Place pads in underwear or within the diaper.

Just got a Lundberg "confidence" clamp. My physical therapist recommended the Dribblestop Male Urinary Incontinence Clamp but Amazon couldn't bring it to me in less than 3 weeks. I like this clamp - for an occasional 20 minute fling - long enough to get from shower to bed without soiling the floors!

I plan to try a Coloplast external catheter soon...

I am preparing to kayak down the Colorado River through the Grand Canyon next month. A 14 day wilderness emersion (with raft support).

 

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@JRImattox;

I hope you have a good time man! I haven't looked into any clamp type products for the sole reason that my bladder condition is continuous spasm and urgency/pain based rather than loss of feeling due to surgery.

I don't think It would be beneficial for myself to wear a clamp; but an external catheter may help alleviate having to wear a pad/brief.

I was literally just thinking about it last night because I don't want to wear a diaper at night; but I'm thinking of another way I could get through the night while continuously leaking.

Please let us know how an external catheter works for you - it's something thats been on my radar but alas, im always hesitant to try something new.

Have fun at the Grand Canyon! I've always wanted to go - I just have never gotten out west.

Blessings In Christ,
Honeeecombs

 

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I am 10 months out now from my prostate removal surgery. I am 66 years old and am in good physical condition. I do multiple kegels at least twice daily while doing yoga in the morning and walking the dog 1 to 2 miles on the evening. I am very active and tend to leak without knowing it when doing yard work, riding my motorcycle, wrenching on my truck and bikes, or just shopping. I do stay reasonably dry at night, a measured 10 to 30 grams, an ounce or less, but go through 3 to 4 Depends during the day which is a great improvement from the 8 to 12 the first three months. The issue does seem to be getting better as long as I refrain from drinking caffeine or alcohol. As noted above, walking seems to help a lot. So hang in there and keep doing your kegels! Also, don’t become a social hermit like I did at first including
giving up on working and going into the office. It seems to help to have the support of friends and family.

Regards,
GMguy

 

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I had my prostate surgery 16 days ago and my catheter was removed two days ago (14 days after surgery). Right now I have literally zero control of my bladder and am going through seven diapers a day. Each time I stand up from a sitting position I get a heavy squirt of urine despite my best efforts to try to control it. I'm 66 years old, fit and active. I walk about 8 miles a day thanks to my two dogs and hopefully this will be a factor in eventually overcoming this incontinence. I have resumed my kegel exercises the day my catheter was removed. It's very early days for me but I'm determined to fight this.

 

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I had my 5 yr. prostatectomy anniversary this past April. My psa remains undetectable, but my incontinence continues. My age, 75, plus my previous bladder history along with heart failure, and back surgery have contributed to my issues. There are days when I feel confident enough to go without protection, but afraid the inevitable will happen...it has! Through time, I have become accustom to my "new normal", and wear protection of some kind. Most of the time it's a heavy cloth pin on diaper with a diaper cover at night, and tape on disposables during the day. Occasionally, I will wear a thick padded brief similar to a toddlers training pant with a pul pant cover over it. It takes time, but life goes on.

 

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I had RP surgery on July 14, 2021 and for some internal issues related to the surgery had to keep the Foley in for almost 12 weeks. After removal of the Foley my urinary control was virtually zero. However the really good news is at the end of November 2021 my urinary control "magically" went from near zero to nearly 95+%, OK great! Well that is until my 39 radiation treatments in March-April 2022. Now 12 weeks post treatments my urinary function is pretty good but not as good as in late November 2021. Now I start the day with a guard pad in a pull-up. Then part way through the day I remove the partially used pad and just continue on with the pull-up which varies as to how much it was actually "used". I do have some frequency issues due to my bladder volume having decreased. However I can use the toilet (when available) normally so all in all this system is quite workable and doesn't really limit me at all in most day to day situations.

 

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@JRImattox

 

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I am 4 months post op, dry at night since week one, but the rest of the time its a piss fest. I suppose 4 months is not long in the rp world but the drs did not prepare me for this. "a little leakage may happen. Yeh right!!!!!!! I suppose at 2 diapers pads a day I have improved from 4, but it sure doesn't seem like it. I pee when I stand,sit move at all. I can hold it but holding it is not practical everytime you move. I have tried a clamp and it works but I wonder if it's good for the long term, the book says no and my pelvic pt says yes it trains. What I have found is that is is hard to believe anybody including my surgeon which I have never seen again in 4 months. So much for the doogie howser TV stuff. its slice and dice and dice, then NEXT! I wonder if other have this experience, oh and the little guy is doa at this time.

 

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@Piissmore;

I haven't gone through any RP surgery wise - but can relate to your feelings in regards to how you feel about your bladder control problems.

The healthcare industry unfortunately has become so standardized that there is no level of care (well - actually too much of a Standard level of practice MINUS the care).

I think we as human being should be more caring and attentive when it comes to these issues as like you said; it seems like a "slice and dice then Next!"

Nobody prepares you for the journey you go through with continence issues and having to wear diapers whether day or night; and I can relate to the frustration that you are facing.

Welcome to the NAFC man; you will find a good group of people here - like myself battle with the emotional coping and dependency of needing protection and the life struggles that come along with it.

I'm 29; been here a couple years and still am having a hard time accepting. It's a day by day struggle.

Blessings In Christ,
Honeeecombs

 

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Piismore,

If it is any consolation you are following a text book recovery schedule.

You will hear from many of us along the recovery continuum identical progress at the same point in recovery you are.

Do your Kegels, follow the recovery protocols from the doctor and gradually increase your walking to stimulate the pelvic floor to take over what the surgery took away.

It does get better but it is a slow and gradual process.

Greensleeves

 

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I'm back from kayaking the Grand Canyon!

I launched with 10 pair of Depend paper underwear and 30 of their pads (MAXIMUM GUARDS), and used the last of these flying home 18 days later.

It was great being on the Colorado river for 17 days mostly in a swim suit. I rinsed my kayak every couple of days to keep the urine stench down. No problem with the self bailing rafts (where I hung out on mild sections of the river), waves would frequently wash across them in the rapids. I also had to regularly rinse my folding camp chair in the river.

Great to have complete continence while sleeping (since 2 weeks after my RP surgery). And toward the end of the trip, I found myself retaining urine during the day when relaxing!

I still have stress incontinence (e.g., piloting an oar frame raft on rapids in the Colorado River). So I continue to use Depend underwear and pads - but they often stay completely dry for many hours at a time.

I continue to occasionally use my Lundberg "confidence" clamp for up to a half hour at a time... like when working outside naked and needing to go into the house for something for a few minutes.

Coloplast shipped me a selection of their external catheters for evaluation. Even with their adhesive, I had trouble with them falling off of my penis...

I would have loved to have had some of these to try when my catheter came out (7 days after surgery). No local drug store stocked them, my urologist's office didn't have any, and the PA that supervised my catheter removal said he couldn't arrange for me to get any at the hospital...

My story continues in a new NAFC thread entitiled:
Recovery of the use of full bladder volume following prostate removal

John