Incontinence only at High Activity Level

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TrekRef
New Member


Date Joined Jan 2010
Total Posts : 8
   Posted 11/9/2010 3:51 PM (GMT -6)   
One year cancer-free. Radical Retropubic Prostatectomy (open) at Johns Hopkins. For normal run-of-the-mill activities including desk work, I am dry 100% of the time. Have had problems with leakage with lengthy walking. Worked the Amgen Tour of California in May as a course marshal and was on my feet 10-12 hours straight. Not pretty.
 
I officiate soccer. More often than not, when I am running hard for a 90-minute match I will have enough leakage to cause a noticeable (to me) wet spot on the front of my shorts. Usually that is swallowed up in time by the sweat but pretty embarrassing for the first 10-15 minutes or so.
 
I'd like to hear from others who have experienced the same activity levels. Is this it - the final answer? Or is there more healing even after 12 months so that I can run hard and not worry?

CharlieTuneA
Regular Member


Date Joined Aug 2009
Total Posts : 37
   Posted 11/9/2010 4:53 PM (GMT -6)   
Hello TrekRef,
 
Welcome to the board.
 
I have the same problem. I'm about a year and a half out of DaVinci surgery, and can't walk far, exercise, bring the groceries in, or rake leaves without minor leaking (not to mention the accompanying ED). I don't mind wearing a pad (they've gotten progressively smaller with time). It's just that I can't spontaneously decide to go walking or do another activity without first stopping in the john to put one on.
 
 
-Charlie

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 11/9/2010 6:40 PM (GMT -6)   
Keep doing those Kegel exercises and you can keep improving..I'm just 2 months out, but if I anticipate a "problem moment", I just instantly go into the kegel mode and cut it off before it starts..That's 90% effective for me...

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/9/2010 7:04 PM (GMT -6)   
I have found the progress to be painfully slow.  Some days seem to be a step backward, and then I seem to be getting better.  It took be 8 months to drop the pads, and haven't gone back. 
 
However, when I get tired, or do heavt lifting, I am prone to squirt.  I have also found iced tea with artificial sweetner to be a certain leaker starter.
 
I have found tho, month by month to be progressing.

AJ 47 (Maryland)
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 11/9/2010 7:07 PM (GMT -6)   
I have the same problem during "attempted" sexual activity. Lots of urine. Otherwise, no incontinence at all. Only three months out. I guess I should be thrilled.
PSA 1.5 to 3.2 in 11 months. First 12 core biopsy on 2/10 negative in 11, atypical in 1. Second 13 core biopsy on 5/10 at Hopkins positive in 2 with Gleason 3+3 (focal). Robotic "Super VIP" Mani Menon on 8/10. Postoperative Gleason 3+4 (70%/30%). Focal ECE right posteriolateral mid. Negative margins, lymphs, seminal vesicles. First PSA on 9/14 <.1. Never incontinence +ED

TrekRef
New Member


Date Joined Jan 2010
Total Posts : 8
   Posted 11/9/2010 7:50 PM (GMT -6)   
I've never quite known whether to really believe those posters who are 100% continent with no leaks. At what level of activity? I would be fine sitting on a sofa except I won't be fine sitting on a sofa. Biking (5,000 miles in the 8 months since I have resumed riding) is the one activity where there is no problem but mostly it is seated (in the saddle). I was quite discouraged yesterday when my primary urologist suggested that this is as good as it gets. I'm not willing to accept that. I'm hopeful there is long term healing and perhaps, nerve regeneration in the 18-24 month period. Cancer sucks.
Age at diagnosis: 53, PSA 7.7 (but really 3.5 after e.coli was treated)
Biopsy 14/1.5 14 cores, 1 positive 1 "suspicious"
Gleason 3+3=6
open surgery RRP at Johns Hopkins 11/07/09 Catheter Out 11/16/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins negative,
10 weeks: always dry at night but 2 pads/day
11 weeks: one pad day

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 11/9/2010 8:32 PM (GMT -6)   
At just over a year from DaVinci and 4 months from RT, I am at 2-3 pads per day, sometimes only 1. Was at 1, rarely 2 before I did adjuvant IGRT. Not sure that I expect any improvement from here, but I keep doing the kegels.
 
The biggest leak-generators for me are a cup of coffee (I've basically given it up completely, unless it is a great espresso, worth the leak), anything carbonated (beer, sparkling wine or water, soda), and orange juice (so much for natural vitamin C).
 
A lot of extra exercise in one day will set off an evening of leaks. Two mile walk- great, but a four - it pours.
 
My uro says give it another 6 months, then we will discuss mechanical solutions for that and the ED.

Post Edited (142) : 11/9/2010 6:41:02 PM (GMT-7)


gift of breath
New Member


Date Joined Oct 2010
Total Posts : 15
   Posted 11/9/2010 10:34 PM (GMT -6)   
There is a surgery available for incontinence: http://www.everydayhealth.com/womens-health/incontinence/surgical-options.aspx?xid=G_&s_kwcid=TC|6122|surgery%20for%20incontinence||S||6080778912&gclid=CPaw5_-nlaUCFQJe7AodokMPOw
Diagnosed w/PC at age 62
6/1/09 PSA< 5.1
11/07/09 PSA< 5.6
DRE < abnormal
3/10/10 Bio <1 of 12 Pos
Gleason < 3+3, t1c
RP 6/15/10 Dallas VA
Post Op Gleason <4+3, t2c
Path clear all margins, tumor centralized in both lobes
both nerves saved
8/13 PSA< less than 0.01 (undetectable)
8/13 <1 pad
8/17 start Levitra (microscopic improvement)
9/9 > PSA less than 0.01 (undetectable)
11/9 > Dry

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 464
   Posted 11/10/2010 7:28 AM (GMT -6)   
I am 3 1/2 yrs post op and I have the same problem.  I am normally dry when sitting or just walking , but if I start lifting weights and exercising or doing a lot of walking, then I will start to drip occasionally, but nothing I can not live with.  The real frustrating part is during sex. I have no ED issues and can get a rock solid erection without problems, but as soon as I get an erection, I drip uncontrolably, and I mean drip.  It is as if a faucet was turned on..  When the erection goes down, the dripping stops.  When the erection comes back, the dripping starts.  Even worst then that,  I now ejeculate urine when I have an orgasm. What is kind of funny is that I ejeculate urine with more force without my prostate, then I ejeculated seman when I had my prostate.  On a good orgasm, I can hit the ceiling. :-)
 
At my one year post opt appoitment with my uro, I asked her about these problems and she said you are not going to get any better at this point, so you just need to learn to live with it.   The uro alsso told me that dripping during sex and ejeculation of urine are common side effects that  surgeons don't tell you about, but are quit common with this type of surgery. 

Post Edited (NY-Sooner) : 11/10/2010 5:37:29 AM (GMT-7)


sm416
Regular Member


Date Joined Sep 2010
Total Posts : 27
   Posted 11/10/2010 5:45 PM (GMT -6)   
TrekRef,
 
I now understand what alot of other members are having a problem with.  I was also, before a procedure to remove blockage (low and painful flow), a believer in saying to some one Kegel is the answer.  I know now that is not always the case, not to say that kegel exercise in not important.  Since the removal of the blockage at the bladder neck, the flow is like a power washer, and there is little or no discomfort.  But I am experiencing the same thing that Charlie and Goodlife experience.  All I have to do is stand up and the flow starts, without warning.  That is the part that is really annoying, no warning!  I hope that you can get some resolution over time, at least that is what I am hoping for.  Right on brother, Cancer does #$^@! sad
 
Steve

OKNow
New Member


Date Joined Nov 2010
Total Posts : 14
   Posted 11/15/2010 2:04 PM (GMT -6)   
Just want everyone to know that there is a solution. The Advance Sling. For men with low pad usage(or leakage only under certain situation), control of your sphincter--- that is you can stop the urine flow mid stream--- have no scaring on the sphincter, the Sling has a very high success rate when performed by an experienced physician. By high I mean 90% improvement -66% completely dry. It is outpatient surgery under anesthesia, overnight catherer, 6 week total recovery time. Mild to moderate post surgery pain.
 
It solves the ejaculation urination problem. That is, if you are dry, you are normally dry during all activities. The ejaculation problem occurs because the sphincter naturally contracts during sex to block urine and support semen. The Advance Sling corrects the weakness in the sphincter function that does not block off the urine flow.

BuiDoi
Regular Member


Date Joined Aug 2010
Total Posts : 234
   Posted 11/17/2010 2:43 AM (GMT -6)   
.
At about 6mths post RRP - I am generally dry, but continually wear a #1 feminine-pad, as I just don't trust myself..
Especially after a hard-day's work.
.
.
Nov 2009 = First-PSA 5.3 @ 60yo - Asymptomatic - DRE-Non-Palpable
Jan-'10 = TRUS Bx DX - AdenoCar T1c - GS(3+3)=6 , 5 & 45% max., L-MidZone
May-'10 = RRP-Nrv-Spare
Post Op. GS(3+4)=7, 1.1cm3, Pos Margins, EPE (focal) Lateral Left
Margin-Involvement (extensive) Posterior , Grade3 x 8mm
+8week PSA<0.01, ED-85%, Incont-30%
+16W PSA<0.01, ED -85%, Cont -5%
+17W First 'DRY' day. ED -90%

Post Edited (BuiDoi) : 11/17/2010 12:52:51 AM (GMT-7)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 11/17/2010 9:23 AM (GMT -6)   
OKNow,
 
I take it that you have had the sling implanted?

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 11/17/2010 10:02 AM (GMT -6)   
When I was maybe 6 months out, it wasn't exercise that would give me that surprise. I could be just sitting comfortably with my legs up for 20 minutes, and suddenly, hey, how'd that happen? Farting was also an instigator. At 6 months these events were only maybe once or twice a week. But now at nearly 2 years, all that has gone away. I used to ref soccer but no longer, but I still run. Did 5 miles Saturday and 3 on Sunday, including a few striders, no problem with leakage.

DJ
Diagnosis at 53. PSA 2007 about 2; 2008 4.3
Biopsy Sept 2008: 6 of 12 cores pos; Gleason 4+3 = 7
CT & Bone scan neg
Da Vinci at City of Hope Dec 8, 2008
Rad prostatectomy & lymph node dissection
Cath out on 7th day, in on 8th day, out again 14th day after neg cystogram
Path: pT2c; lymph nodes neg; margins involv; 41 grams,
PSA 1/08, 4/09,7/09, 10/09, 11/09,2/10 <0.01, 10/10 0.1

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 11/17/2010 11:24 AM (GMT -6)   
I am 99.99% dry. I can do all activities (including treadmill and other gym activities). I do get a drip or two or three or four... maybe once in 5 weeks. Oddly, it happens when I just make a move (not with anything strenuous).
 
So, in that regard, I'm one of the lucky ones.
 
Unfortunately, ED is still there totally (almost). As I may have posted elsewhere, if I get stimulated to orgasm, I get a boner AFTER orgasm good for a few minutes but not quite usable for intercourse. I am 10 months post-surgery. I've been told improvement often occurs 1-2 years post-op so I am hopeful.
 
If NOT, I can easily live with it. That's life. My main focus/fear concerns the PC, which looks to be heading towards a BCR.
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06

OKNow
New Member


Date Joined Nov 2010
Total Posts : 14
   Posted 11/17/2010 1:09 PM (GMT -6)   
142 said...
OKNow,
 
I take it that you have had the sling implanted?
 
142---Yes by Dr. Webster at Duke University Medical Center. He is considered an authority on the Advance Sling(has been doing them for about 4 years) and is very straightforward regarding the probability of success based on their database. He rates a number of factors for each individual based on an exam and tells you where you stand. From my discussions with him and his team, I gather that besides the ability to completely close the sphincter, the absence of scaring--or very little scaring--- is a major factor for success. He refers to the scaring as a sector defect of the sphincter.  As I said in my previous post, if you have a good set of conditions, there is a high probability of success. It absolutely eliminated my frustration on a lot of fronts, social and sexual(no urine upon ejaculation). Albeit that the data is based on a 4 year period only, they say, if you are dry after the procedure and remain so for the next 6 weeks, you will remain dry.

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 11/17/2010 4:38 PM (GMT -6)   
DJ Bear Guy and others:

You brought up the subject about farting, so I would love to have a few more details about this issue. DJ, you implied that passing gas and squirting has been resolved.

I am just shy of 4 months post open RP surgery. I know for many of you 4 months is just a distant memory but, I went from 5 pads a day and am now down to 3 pads a day. I could get away with two pads, but for hygiene sake I change after 10 to 12 hours of wear. I wear a clean one to bed just to be safe. I measure my pad output with a postal scale after coming home from work to check my progress. Surgery was in late July and my September 15th output for 12 hours on the pad was 197 cc. October 15th total was 97 cc. My November 15th total is 38 cc. So I am making progress.

Sitting is good with little to no squirts unless I lean over or do some activity while in a chair. Laying down is usually fine unless I have stupidly drink a glass of water nearly before bed time. Standing is fine unless I am moving around quickly. Walking still brings on a very small but continuing drip and occasional squirt if the terrain I am waking on is uneven. If my bladder is fairly full, I am more continent. An empty bladder brings on more leaking.

Here is my dumb question. Passing gas creates an almost instant and certain gush. Once I reach the point of dryness will I be able to discretely pass gas without squirting. Most of the time it is only air without a smell. The idea that I have to go into a bathroom just to pass gas is really freaking me out. Any thoughts from already continent folks would be most appreciated. Thank you.
Dx 56
Biopsy: Gleason 3+3=6, PSA 6.6 One core of 12 with 5% T1c
Surgery: July 2010
Pathology Gleason 6, Neg Margins, Neg Lymph, Neg Sem Vesicles
Recovering from incontinence and ED slowly

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 11/17/2010 11:40 PM (GMT -6)   
Mike,

For me, it seemed like this. When the gas pressure builds up, in order to let the gas out, you have to relax the kegel muscle. But letting the gas out also lets the urine out. Or, at least it can. What you do (I learned this from Dave) is learn to let the gas out very slowly and carefully. Basically, you learn very fine control over the kegel muscle, not just on/off. Anyway, that's how it was for me, maybe it will work for you. Improvement on this, like everything else, was gradual.

DJ
Diagnosis at 53. PSA 2007 about 2; 2008 4.3
Biopsy Sept 2008: 6 of 12 cores pos; Gleason 4+3 = 7
CT & Bone scan neg
Da Vinci at City of Hope Dec 8, 2008
Rad prostatectomy & lymph node dissection
Cath out on 7th day, in on 8th day, out again 14th day after neg cystogram
Path: pT2c; lymph nodes neg; margins involv; 41 grams,
PSA 1/08, 4/09,7/09, 10/09, 11/09,2/10 <0.01, 10/10 0.1

Drums
Regular Member


Date Joined Mar 2010
Total Posts : 134
   Posted 11/18/2010 12:33 AM (GMT -6)   
I'm dry almost all the time. But there are days, for some unknown reason, when it just seems like the pelvic floor muscles are tired and I'll tend to squirt now and then. Very little, not visible, but I can feel it. The worst times are when I do any kind of jumping (e.g., jumping jacks) or jump kicks at karate. Almost every jump creates a squirt.
52 at Dx (3/12/10), father died of PCa
PSA: 10/16/09 - 2.8; 1/11/10 - 3.8
RALP 5/19/10, Dr. Lee, U. Penn Presby
Gleason 6, gland involvement < 2%; tumor in peripheral zone both sides; no capsular, extracapsular extension, lymph node, or seminal vesical involvement; no positive margins
Incontinence: no pads except specific exercises
ED: pump. Levitra 10mg every other night. Still no-go.
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