Regaining Continence after Radical Prostatectomy

JFG2019

My robotic assisted RP happened two weeks ago.  I am following instructions regarding steps to regain full continence but I have a few questions about the details.  My understanding is that when the prostate is removed, one valve is loss that controls urine flow.  So, does this mean that another valve (connected to the bladder) is still there and providing some control (e.g. 50%)?  If urine reaches the bladder, does it immediately flow through to the urethra and only the pelvic floor muscles can hold it back?  Do the pelvic floor muscles squeeze the urethra to stop the urine from going through the penis and out?  So, if the urine makes it past the pelvic floor muscles, it will leak out?  After I regain full control, will I always need to consciously use my pelvic floor muscles to hold the urine in?  After a child is potty trained, it seems to me that he does not have to consciously engage the bladder sphinkter so he won't wet himself.  It seems to be an auto-response, but, I may be totally wrong.  I am wondering whether, after I regain "full control", will I always need to walk around trying not to wet myself.

MK1965

2 sphincters

But potty trained child still has 2 sphincters.

After RP, we have only one and that is external sphincter  supported by pelvic floor muscles.

I am almost 3 years after RP ( next month) and if I am not preapared while sneezing, I still leak substantially, but if preapared, very little.

Also, while physically active, I can’t hold my pelvic floor muscles ready all the time, so I am leak while physically active.

MK

Georges Calvez

Light pad

Hi there,

I go for a light pad as well in the day but I do not normally need it. If I lift a bag of cement or have a violent cough or sneeze I might lose a drop.
I do not need a pad while sitting or lying down or in normal day to day life.

Best wishes,

Georges

Georges Calvez

Urinary sphincters

Hi there,

A man before an RP has two sphincters, one at the exit of the bladder and one after the prostate.
The two male sphincters work in unison; normally they are both closed a double lock against urine escaping to the outside world. If you want to take a pee, the one at the mouth of the bladder opens and the one after the prostate opens as well, magic you take a pee.
Want to have sex?
As you get an erection the one in the neck of the of the bladder closes locking off urination and the post prostate one opens to let the contents of your seminal vesicles and prostate to pass through the urethra and out to the world.
After an RP you only have the one at the neck of the bladder and depending on luck and the skill of the surgeon it will have variable effectivity.
95% of men will recover good control after a year or so but it is not guaranteed.

Best wishes,

Georges

JFG2019

Clevelandguy said:

Gaining control

Hi JFG,

In my case as I sit in a chair writing this I am not using my pelvic muscle(PM) to hold urine in. When I am laying in bed I don't use my PM to hold urine in and I dont leak . If I stand and strain to lift something I use my PM to hold in a small drip of urine.  I feel I use my PM when I am walking and moving about to hold back the occasional drip.  It kinds of turns into a sub conscious kind of thing on when to clinch a little when doing certain tasks.
It took me about a year and a half to get to the point of an occasional drip here and there with constant pelvic floor exercises done daily.  I still do them every morning while laying in bed.  In my case I will always wear a light pad just so I don't get a wet spot on my pants which is embarrassing.  Each person is different with some leaking alot and some with no leakage so it does vary person to person. 

Dave 3+4

Clevelandguy:  so, while

Clevelandguy:  so, while sitting in the chair and lying in bed your bladder sphincter was holding the urine in, right?  Do you use one of those pads that sticks to the underwear?  What brand?

eonore

Continence

Hi JFG,

The way I put it, I am about 98% continent.  I wear a light pad, the kind that you stick to your underwear.  I used to wear boxers, but I shifted to boxer briefs since the pads work better.  No big deal.  As I go through daily activities, I am not consciously thinking about holding it in, much the same as before surgery.  I do have more urgency than I had before, and then I have to sort of consciously hold it in, once again much as before when I had to go.  The brand of pads I use is the Walgreens light, called Certainty, or Depends Light, whichever is in stock or on sale.  

 

jeffman

2 years post op

And I still use a "light pad" as insurance. I am a WHOLE lot better than a year ago but I will probabl;y always wear the pad . (an ounce of prevention is worth a pound of cure) There have been major changes made to my anatomy and this , to me , is a small price to pay. My grandson is getting married next year and I'll be there. And probably be there to be a great grand dad too some day.

like I said-a small price to pay.

Clevelandguy

Pad type

Hi  JFG,

I wear a pad 24/7, the type that fits with adhesive on one side and sticks to the inside of my briefs.  The pads won't work with boxers.

They are Depends Shields and yes while I sleep or sit in a chair I don't leak any urine.  But if I work out in the yard and stretch different ways I do feel a few drops leak out.  It's a very small amount and when I change my pad every night it  does not seem to have any weight to it, so I'm not leaking much during the day. If you look on Amazon they have heavy duty mens briefs with some kind of absorbent material in them but they are expensive but washable. To lessen the scared turtle effect of my manhood I went up two sizes in briefs to give my boys a little breathing room and let Mr. snake not hide his head, seems to work really well.

Hope this is not too much info for some folks, LOL............

Dave 3+4

Clevelandguy

Gaining control

Hi JFG,

In my case as I sit in a chair writing this I am not using my pelvic muscle(PM) to hold urine in. When I am laying in bed I don't use my PM to hold urine in and I dont leak . If I stand and strain to lift something I use my PM to hold in a small drip of urine.  I feel I use my PM when I am walking and moving about to hold back the occasional drip.  It kinds of turns into a sub conscious kind of thing on when to clinch a little when doing certain tasks.
It took me about a year and a half to get to the point of an occasional drip here and there with constant pelvic floor exercises done daily.  I still do them every morning while laying in bed.  In my case I will always wear a light pad just so I don't get a wet spot on my pants which is embarrassing.  Each person is different with some leaking alot and some with no leakage so it does vary person to person. 

Dave 3+4

lighterwood67

4-6 months

At around the 4 to 6 months point, I was pretty much fully continent.   The issues I have had and have pretty much gone away over the last 19 months is leakage during orgasm; some leakage when I have gas; some leakage when doing partner Yoga with my wife.  My answer to this is to pay attention and control it.  I do not wear a security pad, but I did until I was fully confident that I could control it.  I guess it was just a sense of security.  As far as I am concerned this is pretty much as good it is going to get for me for now.  At this time, this side effect is not impacting my quality of life.  It seems as time goes on our bodies continue to find ways to correct some of the issues.  This does not happen with everyone.  No two are alike.  In my opininon, we will never be a 100 percent after a RARP.  But my goal was not to be 100 percent with the side effects, but to be 100 percent with a cure.  Even though, no two are alike, there are similarities and we can definitely help each other on this forum.  To answer your question, I do not walk around trying not to wet myself.  To me this function is pretty much passive and autonomic until I have to go.  Hope this helps.  Good luck on your journey.

JFG2019

I have always been a lousy

I have always been a lousy sleeper.  Before the surgery (fully continent) I would get up about every three hours (about twice a night) and urinate.  After the surgery, I get up about every 1 1/2 to 2 hours (about three times a night) and urinate.  So, at night I remain dry but get up before any leakage can occur.  Should my body be engaging my pelvic floor muscles while I am sleeping? I am doubtful, but, what do others experience?  Should I expect any more progress regarding nightime continence or have I reached the objective?  Daytime is a different matter.  At the end of a long walk, I will suddenly feel the need to urinate.  I will try to hold it in, but, if I don't get to the toilet within 5 minutes or less, I will leak.  So, I think I need to keep doing the kegel exercizes so I will be able to hold it in longer.  I was 72 when I had my RP.  I know everyone is different and that attaining 100% continence is unlikely.  So, for the daytime, what is a reasonable expectation, based on your experiences?  Is it just holding it until reaching the toilet as quickly as possible (while wearing a light pad to control leakage)?

Max Former Hodgkins Stage 3

JFG2019 said:

I have always been a lousy

I have always been a lousy sleeper.  Before the surgery (fully continent) I would get up about every three hours (about twice a night) and urinate.  After the surgery, I get up about every 1 1/2 to 2 hours (about three times a night) and urinate.  So, at night I remain dry but get up before any leakage can occur.  Should my body be engaging my pelvic floor muscles while I am sleeping? I am doubtful, but, what do others experience?  Should I expect any more progress regarding nightime continence or have I reached the objective?  Daytime is a different matter.  At the end of a long walk, I will suddenly feel the need to urinate.  I will try to hold it in, but, if I don't get to the toilet within 5 minutes or less, I will leak.  So, I think I need to keep doing the kegel exercizes so I will be able to hold it in longer.  I was 72 when I had my RP.  I know everyone is different and that attaining 100% continence is unlikely.  So, for the daytime, what is a reasonable expectation, based on your experiences?  Is it just holding it until reaching the toilet as quickly as possible (while wearing a light pad to control leakage)?

Overall

JFG,

I agree with almost all of what everyone posted above.   It is pure speculation what your future will be, but statistically you are more likely than not to become close to fully continent.  It is still not long since your surgery.   The day of my cath removal the urologist told me to bring adult diapers to wear home, which I did, not knowing what to expect.  In under two days I had cast them off and was wearing just a pad, and was down to a liner within a few weeks.

I find common sense to help in recovery.   Go to urinate at the beginning of sensation, ability to hold will develop later.  Also, beer caused me to lose control, so be careful with alcohol.  Because I had BEP for years and required Flowmax before surgery, my urinary control since DaVinci has been much BETTER than pre-surgery.

It is still early-on.  You will likely achieve very good control soon, since you are doing all of the irhgt things,

max

lighterwood67

JFG2019 said:

I have always been a lousy

I have always been a lousy sleeper.  Before the surgery (fully continent) I would get up about every three hours (about twice a night) and urinate.  After the surgery, I get up about every 1 1/2 to 2 hours (about three times a night) and urinate.  So, at night I remain dry but get up before any leakage can occur.  Should my body be engaging my pelvic floor muscles while I am sleeping? I am doubtful, but, what do others experience?  Should I expect any more progress regarding nightime continence or have I reached the objective?  Daytime is a different matter.  At the end of a long walk, I will suddenly feel the need to urinate.  I will try to hold it in, but, if I don't get to the toilet within 5 minutes or less, I will leak.  So, I think I need to keep doing the kegel exercizes so I will be able to hold it in longer.  I was 72 when I had my RP.  I know everyone is different and that attaining 100% continence is unlikely.  So, for the daytime, what is a reasonable expectation, based on your experiences?  Is it just holding it until reaching the toilet as quickly as possible (while wearing a light pad to control leakage)?

Go Bro

In the daytime, when I feel like I need to go, I go.  I did find that starting and stopping the stream in full flow demonstrated to me that I can control the flow.  Built my confidence up that I was in control.  I personally think you are doing great and need to give this healing more time.  As far as the night urination, I do wake up at night and go to the bathroom.  My gut feeling is that my body is telling me autonomically that I need to get up and urinate which to me is what should be happening.  I like you did everything I was told to do as far as exercising (kegels).  It still took 4 to 6 months to get to what I call fully continent. Another thing you may want to take a look at is what am I eating or drinking and how is your bladder responding to that.  Try a caffefine free day and see what happens.  Try not drinking anything after 5 at night.  All kinds of things to try.  Anyway, good luck on you journey.

Damp

lighterwood67 said:

Go Bro

In the daytime, when I feel like I need to go, I go.  I did find that starting and stopping the stream in full flow demonstrated to me that I can control the flow.  Built my confidence up that I was in control.  I personally think you are doing great and need to give this healing more time.  As far as the night urination, I do wake up at night and go to the bathroom.  My gut feeling is that my body is telling me autonomically that I need to get up and urinate which to me is what should be happening.  I like you did everything I was told to do as far as exercising (kegels).  It still took 4 to 6 months to get to what I call fully continent. Another thing you may want to take a look at is what am I eating or drinking and how is your bladder responding to that.  Try a caffefine free day and see what happens.  Try not drinking anything after 5 at night.  All kinds of things to try.  Anyway, good luck on you journey.

I have had bladder control

I have had bladder control problems for years.  There are days when at home I will try and get by wearing basic boxer briefs, but that is usually met with dissappointment. The urgency can be immediate, and sometimes with pain.  And, my stream can be anything from a slight dribble to an all out flood that can't be stopped.  In additon, at times when I think I'm finished, I contineue to void.  As a result, I have pretty much decided that I should wear a diaper 24/7.  I am 72 yrs. old and had a combined prostatectomy/diverticulotomy 2 1/2 years ago.  At my last check up my psa was undectable, but my urologist indicated that my incontinence would probably not get better.  So, it is what it is I guess.  On another unrelated question, has anyone been told what the time line is for being totally cancer free?  I have heard numbers of 2 yrs., 3 yrs., 5 yrs.  Just curious.

graycloud

Physical Therapy helped tremendously

My husband's surgery was 1/31/2018.  Within a few weeks after surgery, he started physical therapy to improve bladder issues as well as ED issues. From our experience, I cannot stress enough the benefits of physical therapy.  Request this from your surgeon.  Large hospital protocols are moving towards PT being mandatory in recovery after prostate surgery.  My husband's PT was able to work with him to improve muscle strength to handle normaly daily functions you don't think about - in and out of car,  up and down out of chairs, and just about every other normal day to day activity that would cause him anxiety with bladder leakage.  They were able to test muscle strength post surgery, and work up from there.   I wish we had gone to PT pre-surgery to test muscle strength before surgery.  We live in a small town but found PT's that were absolutely awesome for post prostate surgery.  Just over 4 months post surgery, we were walking miles through Northern Europe on a celebration vacation, and not worrying about bathroom issues anymore.  PT not only  helped him physically, it helped him emotionally.  The PT gave him exercises to work on at home and he could see the progess.  Good luck.  Keep working hard, and don't get discouraged.  You had major surgery that involved the bladder area.  It will get better.  My husband's oncologist kept saying "it's a process - with patience you will be back to normal".  Patience is not a virture for my husband, but the doctor was spot on.    One more thing we learned - buy Tena products for leakage.  My husband is very active with work and exercise.  Tena is the most comfortable, etc.   They have "guards" in level 3 down to zero.  Level 3 is available via Amazon Prime or you can order directly from Tena.  You cannot find these products in the stores.   Order some Duluth Trading boxer jocks and life willl be good!!

graycloud

graycloud said:

Physical Therapy helped tremendously

My husband's surgery was 1/31/2018.  Within a few weeks after surgery, he started physical therapy to improve bladder issues as well as ED issues. From our experience, I cannot stress enough the benefits of physical therapy.  Request this from your surgeon.  Large hospital protocols are moving towards PT being mandatory in recovery after prostate surgery.  My husband's PT was able to work with him to improve muscle strength to handle normaly daily functions you don't think about - in and out of car,  up and down out of chairs, and just about every other normal day to day activity that would cause him anxiety with bladder leakage.  They were able to test muscle strength post surgery, and work up from there.   I wish we had gone to PT pre-surgery to test muscle strength before surgery.  We live in a small town but found PT's that were absolutely awesome for post prostate surgery.  Just over 4 months post surgery, we were walking miles through Northern Europe on a celebration vacation, and not worrying about bathroom issues anymore.  PT not only  helped him physically, it helped him emotionally.  The PT gave him exercises to work on at home and he could see the progess.  Good luck.  Keep working hard, and don't get discouraged.  You had major surgery that involved the bladder area.  It will get better.  My husband's oncologist kept saying "it's a process - with patience you will be back to normal".  Patience is not a virture for my husband, but the doctor was spot on.    One more thing we learned - buy Tena products for leakage.  My husband is very active with work and exercise.  Tena is the most comfortable, etc.   They have "guards" in level 3 down to zero.  Level 3 is available via Amazon Prime or you can order directly from Tena.  You cannot find these products in the stores.   Order some Duluth Trading boxer jocks and life willl be good!!

One more thought

My husband has met with the bladder oncologist at MSK on his last two visits.  One thing he found out 6 months ago is that he wasn't emptying his bladder enough.  (via emptying test and ultrasound).  So, he needed to focus on making sure he emptied his bladder.   Sitting versus standing will empty more and that small "tweak" helped tremendously.   Again, PT will help with Kegels and making sure you are doing the kegels correctly. 

JFG2019

Thank you everyone, your

Thank you everyone, your comments are extremely helpful. I have a question about kegel exercises.  When I do them, I feel the muscle in the pelvic floor contract.  This feels like it is just behind the scrotum (south when lying down).  Is this the right target area?  I was reading the book by Dr. Patrick Walsh and it suggests contracting the glutes as the right exercise; but, that doesn't seem to put all of the impact of the exercise to my pelvic floor. (Apologize to the Dr. if misunderstood).  P.S. I find it is almost impossible to do this exercise without contracting my abdominals to some degree.  I let my hand rest on my abs while lying down to check this.  Yet, this is supposed to be a no-no.

VascodaGama

Trying to force a natural behavior

I read all the post above and tried to compare experiences. Fortunately to me I have been continent since drawing off the foley catheter, in August of 2000. Coughing or sneezing never caused a disappointment, but recently I have experienced some dripping when squeezing the abominal area to postpone a urge to defecate. The dribble is just a fewer number of drops in my underwear. I think that the urge is due to the radiation proctitis now more accentuated than the years before since SRT in 2006.

It is hard to distinguish which muscles or areas are contracted or squeezed when forcing to avoid urination or defecation. I believe we got it naturally without the need for much thinking. We all at some time in life before surgery, have experienced that moment when on office meetings or when travelling or etc, we had to force a postponement of urination to a more convenient timing (that could be two or three hours later), so that we squeezed the abdominal area. We also have experienced those occasions when we forced the urine to be excreted faster, squeezing again the abdonminal area. This is what I still do but after surgery these postponements become shorter to 30, 45 minutes times. The urge to defecate obliges to still lesser periods.

I believe that we got it naturally but thinking in using a particular muscle may disrupt the normal body behavior. I would recommend to those forcing the kegels or others, to stop thinking that deeply and try to accept what is occurring by using the pads. In time one will get better control. The muscles involved when squeezing the abdominal should be the same when forcing the urine to be expelled faster. Forcing a faster urination will oblige the body to react contrary and such may lead to faster improvements.

Best to all,

VG

Georges Calvez

Boxers

Hi there,

I have been wearing briefs and a pad since the operation but I now feel confident enough to return to wearing boxers in bed, not confident enough to go commando like I did before the operation though.
I am on a Tena 0 now and it is there fior the odd cough, sneeze, etc so I am not bad.
The important thing to stress to my mind is that most men will recover a very high degree of control. It often seemed endless to me but towards the end I began weighing the pads and graphing the decline in the mass of urine lost, each zero day was a little victory and the first week was a triumph.

Best wishes,

Georges

ufknkidding

5 weeks post RARP

JFG2019 Congratulations on surving prostate cancer and the RARP.  I'm 5 weeks out so about 3 weeks ahead of you. I have not gone to physical therapy nor have I tried kegel exercises. I stopped wearing the bedtime diaper at about 2 weeks and switched to a pad instead.  So I wear 1 pad during the day and occassionally the same pad at night or have to switch to a new pad. My biggest challenges are learning to accept the new me, relearning how to control my continence, relearning how to control erections and relearning how to control (now dry) orgasms.  I have enjoyed the fact that my urine flow is now unobstructed and I am by no means a stream weaver (power pisser) but have noticed I don't sit on the toilet and wait for the urine to come and go any longer.  My external urethral sphincter is doing a fairly good job at this point. Most of the time I am not leaking but I do pay attention to the new "time to pee" sensations. When I feel it, I go even if it is just a few drops. I also am awakened at night by this sensation so will get up at night to go pee; this was 4 times a night then 3 times and now I'm down to 1 or 2 times per night.  So much of this experience for me is learning the new sensations and acting on them.  Try to keep a good mind through all of this and know we are all wishing you the very best in life and most of us have been or are in your shoes and willing to help you stay positive.