Incontinence issues...what a drag

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WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 7/30/2007 4:00 PM (GMT -7)   
Hi Everyone,
 
Haven't posted for my husband in a while but have been reading this site frequently.  David had Da Vinci on June 4th at UCLA.  Tough surgery.  He was in for a week and he had some blood loss but he got through it.  We are now 2 months post-op...did any of you still have some pain in urination?  And were any of you still somewhat incontinent?   David is still using pads.  It's a total bummer.  We still have not gone in for our post-op PCA yet. That will be done in August but the results showed no positive margins and that the cancer was contained.  That is good news.  The last e-mails from the doctor said some pain in urination was normal as was incontinence...but it's a bummer.  How many of you dealt with that?  (or are still dealing with it?).
 
Thanks so much-
Cynthia
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
Live in Los Angeles with wife and 5yr old daughter


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 7/30/2007 4:28 PM (GMT -7)   
Cynthia,

Most still have some incontinence issues at two months.
Many start controlling leaks somewhat from month 2 through month 4 and then just suddenly don't need pads.
I always suggest getting a referral to a bio-feedback therapist to focus your pelvic floor muscle kegel exercises  - if after 8 weeks you are not gaining some control and seeing improvement.

A few fight incontinence much longer.  Most will be down to one "security" pad that sees little if any spotting - or no pad - by six months.

While you didn't mention it, Erectile Dysfunction can be no problem for a VERY few, or take one to two years to overcome for most.  If after 8 weeks, he still has erectile dysfunction, I  personally recommend he start pump therapy ASAP (not for pleasure - rather to stop the tissues from atrophying and to encourage nerve rehabilitation/coordination).

Most importantly, it is great to hear your husband's margins are clear!
Be patient and be positive and you will heal.

Your Friend,

CCedar
ICTHUS!

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.  + Confined:)
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 353
   Posted 7/30/2007 11:27 PM (GMT -7)   
Cynthia,

I think you know my situation, but just in case, see my signature to see how my incontinence has progressed. Still dealing with one pad a day here, but it took me awhile to get there.
____________________

Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: pre-surgery 3+3=6; post-surgery 3+4=7
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6-12 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006); 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007); 4th post-surgery PSA: 0 (June 2007)

The search for timber: took Viagra/Cialis approx. every other day, ErecAid once a day, injections. Peyronie's diagnosed 7/5/07. Now on Cialis, L-arginine and pentoxyfylline, ordered to be celibate for 6 weeks.

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (2 for 6)
- Trimix batting average: .500 (1 for 2)

"Lost in the valley without my horses, no one can tell me what my remorse is..."


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 7/31/2007 9:04 AM (GMT -7)   
Hi Cynthia,

The profound improvement in my incontinence did not occur till the 10th week post surgery. That is what my doctor suggested I might expect. From then on I used a Serenity pad once a day just in case for about a week or two, but probably didn't need to.

We all heal differently some lucky few never suffer at all; I was a bit slower. Please try to have patience, and continue to exercise as your doctor recommends. Good luck; I hope David is dry very soon.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 8/1/2007 7:53 PM (GMT -7)   
I'm one of the worst leakers here. Almost 10 months post op and still no control when standing / walking. All I can say is to find a Bio-Feedback therapist so you know you are getting the pelvic floor muscles. I feel like I wasted 6 months by doing mine by feel alone! Check out KW's Journey to see my whole story.

Good Luck,
KW
    43
    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.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


WHOFAN
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 8/3/2007 9:00 PM (GMT -7)   
Thanks everyone.
I am posting for David. It's a real drag, still. As his wife I feel bad that it's taking so long to stop the leaking.
It's been 8 weeks and it's still not great. As you can see, David is still using about 7 pads daily. sad
We'll see what happens over time. We don't see the point in going in to see the doctor quite yet as he will just probably say the standard vanilla response ("Are you doing your kegels? It just takes time & everyone is different")....
Thanks again....
WHOFAN
Husband: 53 yrs. old
Diagnosed 3/12/07

PSA: 8.12

T Stage: T1C - GLEASON: 7 (3+4)

Da Vinci performed 6/4/07 at UCLA with Dr.Robert Reiter.
Staging after surgery: T2B
Cancer contained in capsule. Negative surgical margins. All looks good
for now. First post-surgery PSA scheduled September 19th.
Catheter out 6/13/07
2 months post surgery:still leaking quite a bit; average 6/7pads daily :-(
Live in Los Angeles with wife and 5yr old daughter


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/4/2007 6:51 PM (GMT -7)   

Hi ~ Cynthia & David,

 

I see the little blue guys throughout your postings and the little guy with the downward “smile”…so thought I’d send a few special hugs “WARM WISHES” your way….. 

 

Warm wishes are just like the rainbows

that help make our clouds disappear,

They help us feel precious and cared for,

and fill us with comfort and cheer (optimism).

 

Take One~Day~At~A~Time and know that we continue to be here for you!!!  

 

Cynthia ~ If you ever need to talk… just click here… How many wives get depressed?  Thread started by Wicket 

Don’t hesitate to let some of the pressure out….  Lean on us ~ as we all continue to move forward in our journeys with the ultimate goal ….being prostate cancer free. 

Remember ~ we are here for you too!!!! 

 

In Friendship ~ Lee & Buddy

 

Please take this  R a I n b o w  and keep it close...

 

 This is “YOUR” rainbow

/////////////////////////////////////////////////////////////////

////////////////////////////////////////////////////////////////

///////////////////////////////////////////////////////////////

///////////////////////////////////////////////////////////////

 

Rainbows brings smiles, smiles bring positive energy into our being!!!

 

 


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

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

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

 


Mokele
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/6/2007 2:05 AM (GMT -7)   

Just joined the site. Not feeling too chipper at the moment, since I'm totally incontinent sad   Had radical prostatectomy July 19, went home the next day and had the Foley catheter removed Friday August 3. The catheter hurt rather a lot while I had it in, especially if I moved around much. There was no infection apparently, just pain from rubbing inside the urethra. 

Of course I was told about the resulting incontinence by 1 of the urologists who did the surgery but it's a new and bothersome experience to say the least. At the moment it feels like I'll never get any control, but I suppose it's too early to make such an assumption.


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 8/6/2007 4:24 AM (GMT -7)   
Mokele,

TAKE IT EASY!  You will heal. 
You can speed it up a little by practicing those kegels:  Three sets a day while sitting.  And when you have the energy (Kegeling is exhausting!), try walking around the garage - nude from the waist down and try to hold it - with a styrofoam cup under your penis.
This will help you identify both the muscles you need to develop and how these muscles must learn to coordinate.  They don't just stay flexed.  That is both exhausting and impossible while walking. 

After awhile - and when no one is home - try the "nude with cup" trick on the stairs. 
As I learned some control, when I woke up in the morning with a full bladder, I would hurry over the toilette and try to hold it as I coughed.  It is a humbling effort!

When you are not kegeling - just walk around the neighborhood with pads.  The entire pubic cavity is a little irritated right now and you have a lot to "walk off!"

Start a thread.  Tell us about you and your experience.  It will help both you and others.
TAKE IT EASY!

Your friend,

CCedar
ICTHUS!
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.  + Confined:)
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 8/7/2007 4:10:43 AM (GMT-6)

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