Now I am in Panic Mode About My Incontinence... Help.

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Regular Member

Date Joined Mar 2007
Total Posts : 422
   Posted 4/9/2007 10:05 PM (GMT -6)   
I have been following this forum now for about about 5 weeks... as soon as I found it. I have posted a few times, too.  While reading reading here, I've noted that one should get Dr. Walse's book or Dr. Scardino's book.  Today I went to the bookstore.  Dr. Walse's book was not available but Dr. Scardino's book was.  Some things I've read tonight have put me in a panice mode.  Here are a few excepts which have frightened me:
"In the hands of average surgeons nationwide, about 8 percent of radical prostatetomy patients report troublesom incontinence. For those operated on by expert surgeons, any long-term urinry control problem--includng minor leakage--is uncommon....By six weeks after surgery, 90 percent achieve social continence... Seventy-five percent of these men are sufficiently dry to stop wearing pads altogether, and the rest simply use a small pad to contain minimal leakage...." p. 340.
"Thogh it's common for people to equate the term 'urinary incontinence' with the complete lack of bladder control seen in infants, in fact the generally accepted definition of 'severe incontinence' after prostate cancer treatment is leaking 2 or more tablespoons of urine per day and being moderately to severely bothered by it...." p. 340.
"In patients who continue to experience some leakage more than  six weeks after surgery (I am now 8 weeks), the problem is typically minor, requiring the use of no more than one to two pads per day..." (I use 5-8 per day) p. 342. (Yes, I do Kegals)
The rason for my panic is, tonight I am feeling a bit hopeless about my incontinence.  Although I have gained enough control to hold it back after I get up from this computer until I get to the bathroom, if I don't hurry, I will gush and fill my pad to nearly running over.
My feeling is that I must have chosen an incompetent surgeon (recommended by my urologist).  I did hardly any homework before the surgery.  I guess I was dazed.  I did consider the DaVinci, but I setted on the open because I would have had to traveled a good distance to get it.  I didn't know and somehow didn't think to ask about how many this guy did before me.  I know of one man who he operated on 5 years ago.  He's a few years younger than me and he was incontinent for 6 months, was not told abut Kegals, but suddenly became continent after 6 months. 
So I am 8 weeks post surgery and I still gush and, according to this book, this is uncommon.  It's true... I am in a panic mode and am writing this having just put the book down.  I guess I just need some reassurance from you veterans that things can typically get better.  The surgeon told me he spared the nerves and the path report was that the cancer was contained in the prostate, but he did not share any stage information... and I didn't know to ask him... but I will.  I am to see him next week.

Regular Member

Date Joined May 2006
Total Posts : 80
   Posted 4/9/2007 11:55 PM (GMT -6)   
Calm down.  You can't believe everything you read in those books.  People scare themselves to death reading those books.  Four to six months is a more reasonable expectation for  good continence.  After that it tapers off.  Don't be too hard on your urologist.  We can't all be experts and neither can the doctors.  We just do the best we can.  Your situation sounds normal.  The percentage of people who are totally continient at 2 weeks is very small.  Like I said, "those books will scare you to death".  Keep doing the kegels and it will happens in it own time. 
Thats my little bit.  You'll be getting plenty more posts.

M. Kat
Veteran Member

Date Joined Jul 2006
Total Posts : 715
   Posted 4/10/2007 6:29 AM (GMT -6)   
Gene, hang in there! like you said, you do have some control which means you do have those muscles. one thing I read in the paperwork that we got from the hospital was that you should go to the bathroom every few hours, even if you don't feel the urge. that way you're not overflowing. it will get better. keep doing those kegels .... kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump

Veteran Member

Date Joined Feb 2007
Total Posts : 1219
   Posted 4/10/2007 6:47 AM (GMT -6)   
Gene -

what jackcc said.

There are few, very few here who were continent at 2 weeks. Get Dr. Walsh's book and you'll see the difference between the two doctors statements. Do some authors pump up their numbers to look better? Is there some sort of ego thing going on in some statements made? Maybe.

Don regained continence pretty well, we thought, and it took him probably 4 months to be completely dry. The fact that 8 weeks out you can rise from a sitting position and make it to the bathroom (even if you do have to hurry) is good.

Sounds like you'll be fine, Gene, just take a deep breath and relax!
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3

Cedar Chopper
Regular Member

Date Joined Mar 2007
Total Posts : 432
   Posted 4/10/2007 9:06 AM (GMT -6)   
Everyone is different.  Physicans, patients, authors, researchers....
My father always quoted someone saying  "Figures don't lie but liars figure."
Whether the data you see is skewed or right on means nothing if it isn't helpful!
I am personally in week 8 and only have real control sitting and resting.
However, the "elevator" form of kegel exercises has allowed me to "catch" SOME urine even as I am walking and lifting at work.  (Elevators:  half power, full power, half power, rest  - ten reps  - three times a day.  It reminds me of a variable speed drill.)
This form of kegel seems to help coordinate control while walking & chewing gum...
Cedar Chopper
2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?

Regular Member

Date Joined Mar 2007
Total Posts : 422
   Posted 4/10/2007 10:40 AM (GMT -6)   
jackcc, M. Kat, myman, Ceadar Chopper..

You all said something which helped me to "calm down". I accepted His peace before I slept last night, but when I awakened and read your posts this morning, I was reassured. Each of you posted something very helpful.

Ceadar Chopper, you mentioned the "elavator" form of the Kegals. I don't quite understand what you are talking about, but I think I would like to try them. I do Kegals by holding for ten seconds, realeasing for ten seconds, and doing this ten times, then ten short bursts of holding and releasing. Can you explain the elavator form or direct me to a site that explains it? I can only hope I am doing the Kegals right. I think I have located two distinct, but related muscles down there: One seems to control the rectum and the other seems to attempt to control urine. When I was leaving the hospital, my surgeon had me to turn around and he inserted his finger in my rectum and told me to squeeze and then said, "that's the muscle you want to exercise". But it seems there must be two distinct but relaated muscles. Am I right?

Again, thanks for the input and any other input I will eagerly read.


Veteran Member

Date Joined Jul 2006
Total Posts : 686
   Posted 4/10/2007 12:08 PM (GMT -6)   

Hi Gene6163

Gaining control seems to be very different from person to person.  I have continued to improve. but there are some minor setbacks as healing progresses.

The best advice I was given about incontinence has to do with kegaling in the"Right place".  Some people admitted that no one every followed up with them to see if they were doing it right.  Here is what I suggest.  First .. locate the proper spot.  Sit on the edge of a chair and reach back underneath your scrotum and push your finger against the area "between" your rectum and your scrotum. With your finger in place tighten those muscles so you can feel it flex with your finger.  Hold the muscles for a few seconds and then release.  Some people describe the flex as a squeeze.  That is the area that will give you the control you need.  Check back with your finger every so often to confirm that you are squeezing the right muscles.

Another person suggested a more wacky approach, but it does work.  He suggested you walk around the house, climb stairs, etc naked from the waist down (no pants),  He carried a cup and finally trained himself to stop the flow by flexing.  I don't recommend this when your wife has her ladies bridge club meeting at your house.  :-)

As far as second guessing your surgeons skill, try not to over analyze.  We all made our decisions and maybe some surgeons are more competent than others.  That is in the past.  Make sure you are getting the good follow up care that you deserve.  If your doctor is not doing what you want, than it might be time to seek some other medical help.
Good luck, you know from reading here that other men are having the same problems that you are. Most are getting better. That is a sign that things are moving forward.  Keep asking questions and sharing with others. 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
Back on the golf course...

Veteran Member

Date Joined May 2006
Total Posts : 2542
   Posted 4/10/2007 12:54 PM (GMT -6)   

Hi ~ Gene,


The most important thing you must remember is that we all heal at different rates.  And urinary continence is the same thing.  You’ve had your surgery so don’t look back and wonder about it...  The ultimate goal has to be becoming ~ cancer free….  You are on the healing/recovery stone and it will take time.  Not something we want to hear but it really is true…


Gene ~ What type of exercises are you doing?  Walking, stairs, and yes kegels?  Did you find the other postings about incontinence here on the forum???  In “Our Journey” we made others aware that the “book” has the information that is needed to understand what we are dealing with…  I’ve taken a little excerpt from what we posted:


Excerpt from “Our Journey ~ Sharing is Caring” by Buddy & Lee 

Dr. Walsh’s Guide to Surviving Prostate Cancer…(Give Yourself a Second Opinion), is truly a book of knowledge… teaching you about this disease… that affects the whole family!


It is not a book to make you scared ~ but to make you think, to make you understand, and to make you knowledgeable about this terrible cancer….. It doesn’t hold back….


But remember…being scared is part of this whole picture at the beginning anyway… so take in the information that is offered from its contents. 


We are not promoting this treatment.... that is definitely a personal choice.  This book has information that "all of us" can use no matter what treatment you decide on. 


Read only areas that you are comfortable reading at first.  Gradually you will likely read it all…  I did not read Chapter 12 until after our surgery and after we had a few weeks under our belt.  Then I skimmed through the pages… and it made me really appreciate what we have just gone through….. and give thanks each day for having found this cancer early. 


We still feel very comfortable promoting this book…  Now ~ We can truthfully say we did not key into the “percentages”…..Why?? Because we knew we had to get the cancer out!!!  First and foremost…. Then we would deal with the urinary incontinence.  I understand that the book scares some and we even had one member put it away in a drawer for a few days…. But over time she pulled it back out and continued to learn about this disease and the healing/recovery issues. 


Please know that you are not alone on this particular wobbly stone of incontinence…. But ~ giving yourself the time and learning as much as you can about what you need to be doing to help “you”…. Is so very important.  8 weeks really isn’t a long time when you think about what the body has gone through.


We are so thankful you continue to reach out….. because knowing you are not alone definitely helps and will help take some of the fear that continues to push the positives away.  Don’t let it.  Take one~day~at~a~time and work through it with all of our Helping Hands.


I’m at the library today and had planed to touch base with you about the white blood cell count & tests.  Did you follow up on this??  Please let us know how this is going.  Having this and the incontinence is definitely adding to the “stress”.


We purchased Dr. Scardino’s book about 3 weeks ago.  It has information that Dr. Walsh’s book does not have and Dr. Walsh’s book has information that Dr. Scardino’s does not have.  I know in a previous posting you mentioned your doctor did the testing to see if you would be able to take the collagen.  We also keep reading that this should be a last resort!...  There’s also a “sling” that a friends brother has and says it works well.  And a lady I just met at the library…. Her husband has the clamp and says it’s very uncomfortable.  Now each of these men waited over 16 months before doing anything…. So ~ with 8 weeks under you… I would definitely wait for your body to do as much healing as possible.  Dr. Walsh says it can continue to heal up to 2 years for a few men.   Don’t let the fear pull you under.  You’ve come to far and hopefully in the next week to two weeks you will see that you really are better than 2 weeks before.


Our thoughts and prayers surround you “extra” during this very trying time for you.  Easy for us to say…. But try to keep the positives in front of you!...  And again ~ continue to keep us on the front line with you.


In Friendship ~ Lee & Buddy


(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Threads by: Gene6163 

open Surgery Three Weeks Ago...

"Gushing" and Collagen Implant

Method discovered (?) while attempting to regain Continence

Six Weeks & Starting to Bleed...

Now I am in Panic Mode about My Incontinence... Help.




 ** Excerpts taken from a wonderful book called “Dr. Patrick C. Walsh’s “Guide to Surviving Prostate Cancer” by: Patrick C. Walsh, M.D. and Janet Farrar Worthington.  Copyright 2001….. 


 Excerpt: Page 246

**After the catheter is removed….

     > Until your urinary control has returned to an acceptable level, don’t force fluids. 


>Once the catheter is out, you’ve got to slow the pace considerably.  Avoid drinking excessive amounts of fluids, and stay away from caffeine in all forms---coffee, tea, even soft drinks.  Caffeine, especially, is a powerful pharmacological agent that increases the frequency and urgency with which you need to urinate.



**Urinary continence: The return of urinary control:



**Phase One is when a man can remain dry when lying down.


**Phase Two,  you’re dry when you’re walking around.


**If you can walk to the bathroom and not urinate until you get there, that’s a GREAT SIGN!!!…

    ---it means that the sphincter is intact.


**Phase Three, you are dry when you stand up (using muscles that put pressure on the sphincter)

   after sitting.


**Remember, the recovery of urinary control is a slow process.


The most important thing you can do during this time

is not to get discouraged.



Excerpt: Page 244

**It’s hard to believe, but urinary control does continue to improve over two years and, in an occasional patient, even longer than that.


**Can you do anything to speed things along, and improve your urinary control?  First, whatever you do, do not wear an incontinence device with an attached bag, a condom catheter, or clamp!  If you use any artificial device, you will hurt yourself in the long run.  You won’t be able to recover your urinary control, because you won’t develop the muscle control you need.


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

Regular Member

Date Joined Mar 2007
Total Posts : 422
   Posted 4/10/2007 7:35 PM (GMT -6)   

Again, thanks everyone.


Thanks for your post and questions.  Yes, cancer-free is the focus.  Thanks for reminding me.

What exercises am I doing?  The Kegals and walking.  I aim to walk two miles every day and most of the days I do.  No stairs... don't have any but of course I could find some pretty easy.  Yes, I think I've read most if not all the posts on incontinence.  I should know not to panic, but...  ...And thanks for the excerpts.  I looked for Dr. Walsh's book again today.  I will go down to Dallas in a few days and hope to find it.

Thanks for mentioning my post about the white blood cells, too.  The bleeding comes and goes.  It did it again today during my two-mile walk and yesterday after cleaning the bathroom.  It was pretty heavy in a new pad today and again concerned me when I saw it.  I called the doctor's nurse yesteday because I bled after doing a simple chore of bathroom cleaning. She said she would schedule an appointment and the quickest one is April 26.  But with today's bleeding again, I think I will park on his doorstep tomorrow or try to see my regular urologist or go to the emergency room (Second thought, not!).  I do not think I should be off-and-on bleeding after eight weeks.  It just does not sound normal to me.  And I still have no clue about what it means to have white blood cells but "did not grow anything".  Isn't blood in urine something to be concerned about whether or not it grows anything?

Your quote from Dr. Walsh's book from page 246

**After the catheter is removed….

     > Until your urinary control has returned to an acceptable level, don’t force fluids

Your quote from Dr. Walse's book from page 246


I was under the impression I should drink lots of fluid to flush infection?


This has gotten too long, but I hope you and/or others can respond.



Veteran Member

Date Joined Nov 2006
Total Posts : 883
   Posted 4/10/2007 10:04 PM (GMT -6)   
Gene, Your not alone. Check out my "KW's Journey" story for all the details. But, I'm 5 months post op and still have gushing at times. I am dry when sitting or sleeping. But when I start moving around I start leaking. I can hold my bladder when it is full after sitting for some time. But once I go, the leaking starts agian.
I have tried Detrol LA and there was no change. A little over a week ago I had the collagen injections. But I have started leaking agian when on my feet. I call the Dr. today and left a voice mail for the nurse to talk to him. Have not heard back yet.
I just try to remember that the incontenance can not Kill me.
Don't beat yourself up over being slower than many of the guys here. I think we hear more about the "dry" stories than the "wet" ones because some people don't want to admit they are having trouble with it.

Hand in there and try to keep your spirits up. I KNOW how your feeling!

    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.
    Return office visit May 2nd unless leaking starts agian.
    May 22nd Follow up and 3rd Post Op PSA

Veteran Member

Date Joined May 2006
Total Posts : 2542
   Posted 4/10/2007 10:30 PM (GMT -6)   

:-)     Hi ~ Gene,


It doesn’t matter how long the posting is.  What you have to say is important and if we hit page 5 on this thread…. We’ll get you to start a new Thread.. so keep posting.    yeah  


In reference to the quote about excessive fluids… you have to look at the overall Quote… and you have to look at your “own specific” happenings… but wanted you to have it handy.  If you are drinking caffeine… you may need to stop so you can get some idea of what control you can get without it.  Buddy feels the stairmaster has been the best exercise next to kegels.  He does not over do them…. because the little sphincter muscle can get tired so then you defeat the purpose. 


I agree 100% ~ something’s going on and I definitely would see my urologist.  When did you see him last??  Take or have your records faxed to your urologist… before you see him… if your family doctor did the test.  That’s what we do.  Then he has them in hand for your appointment.  Do go any longer without getting answers….  You mention cleaning and other chores.  Have you been doing these all along since surgery??  If so ~ you may just keep tearing the healing tissues away and they haven’t had time to heal properly.  Just a thought that jumped in my head.  And the walking 2 miles.  Try breaking it up into 2 or 3 different sessions.  The first 6 weeks Buddy did a.m., noon, and p.m. walks.  Again ~ just brainstorming…  I remember reading 2 different guys with the cup as Lifeguyd stated in his posting above.  It worked for them and anything is worth trying…  


Thank you for accepting my postings… they are sent with much care and thought… and yes ~ I do sometimes   tongue   get a little wordy but when the fingers start typing I just let them go because they are trying to keep up with my brain.  I was at the library today (hi-speed) and that’s where I usually go to read the postings.  And then later in the evening I get on-line at home (dial-up) to do my postings.  But ~ when I saw your posting I just started typing!!! 


Gene ~ go on-line with or even E-Bay.  That’s where I got my books!

Hope to hear soon that you’ve got an appointment with your urologist and you’ve found some stairs!! Please keep us close ~ okay!!  In Friendship ~ Lee & Buddy

mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

Cedar Chopper
Regular Member

Date Joined Mar 2007
Total Posts : 432
   Posted 4/11/2007 5:33 AM (GMT -6)   


Improving the  "recruiting pattern" for the Kegel muscles - that is what my "bio-feedback pelvic floor muscle therapist" has me working on.  The pelvic floor muscles include the muscles around the anus (as you noted), those that can consciously stop the urine flow (see Lifeguyd's description), and the (VERY) lower abdominal area of the pubis that is just above the penis.
My therapist says that while stopping urine flow in mid stream can isolate the muscles (see Lifeguyd's idea about feeling below the scrotum), my therapist says that you should NOT use "stopping urine flow in mid-stream" as an exercise as you are confusing signals to the smooth muscles controlling the bladder and its valve that you have no real conscious control over.

I am one of the patients that uses the "walking around nude with a cup" method.
However, now I just use old t-shirts as the leaks are now small and the cup is awkward and spills.
The benefits of "walking around nude " include immediate feedback of leaking, zero tolerance for leaking (LISTEN TO LEE & BUDDY BLUEBIRD!  NO CLAMPS.  NO BAGS.), and staying dry between 10 to 14 hour shifts at work with pads. 
My latest variation on this naked exercise: When I awaken in the morning (from sleeping nude over a bed incontinence pad) with a full bladder, before I relieve myself, I stand over the toilette and cough REALLY hard while trying to keep from leaking.....  I still have a lot of work to do for that kind of control!
My therapist calls flexing all the pelvic floor muscles for this kind of control "bracing."  (For example, while lifting 80 pounds or sometimes just sitting up from a reclining postion with a full bladder....)

The idea is to use the same pattern of sets of ten you currently use.
However, you flex at half strength for 3 to 5 seconds,
  then full strength for 3 to 5 seconds,
    then half strength again for 3 to 5 seconds,
        (this "elevator going down" part is the most difficult and most beneficial)
      then rest for ten seconds.
My 30 minute commute allows me real focus on these exercises.  I am getting stronger muscles and a little bit better "walking around & lifting" control each day.

The idea of doing these on the stairmaster (Thanks Mama Bluebird!) is sound.
I "Kegel" while uing a Total Gym in rowing machine mode -and just on the floor doing  "backstrap focus stomach crunches."
The main idea is that as you use variable strength in various movements and positions-
you refine and develop the "recruiting patterns" and coordination of the muscles you will need both unconsciously and consciously.
(My personal goal here: Zen Shaolin Urology Kegelmeister....  eyes )

Try to remember:
Who(se) you are,
Where you are going, and that
God's Presence is very familiar with (toilette training!) His children.  :)

Cedar Chopper
In week eight - using 4 to 8 pads per day
- depending on time spent working/lifting (10 to 14 hours)

2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?

Regular Member

Date Joined Oct 2006
Total Posts : 43
   Posted 4/15/2007 5:25 PM (GMT -6)   
It's been 2.4 years since my surgery. I still wear a Poise regular pad each day "just in case." Not much leakage but certainly a teaspoon amount is always possible. I've had a few embarrassing moments when I was out with some people and drinking too much wine. Seems that one can easily forget that the bathroom calls. Extra pads are always a good thing to have with you when necessary.

Lot's of people have said, "everyone is different" and that is so true. Just get it to the point where it is manageable for you and your lifestyle. There is really nothing that you can't do if you plan it right!

Axe - 59
Diagnosed - October, 2004 - PSA 3.3 up from 2.4
Gleason 3+3 = 6
DaVinci Surgery - January, 2005
UVA Medical Center
All PSA's at 0.00 since

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