Setback from "automatic" to "drip-alert"

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MartinP
Regular Member


Date Joined Mar 2017
Total Posts : 37
   Posted 11/10/2017 4:56 AM (GMT -7)   
Hi guys

Wonder if any of you have experienced this:

Am now 9 months after DaVinci, and I am having what feels like a setback in incontinence: From around 4-8 months postOP I was really doing great, talking' pee-control. It felt almost like preOP, which means I didn't have to do any conscious kegeling for example when bending down, lifting up, coughing and so on.
That made lazy me reduce my almost daily kegel-exercises to about 2 a week.

Now I get some of the annoying feelings again which I had during the first months postOP: Feeling that a drop is almost on its way. Feeling that I have to tighten my pelvic floor consciously when doing certain movements. Apart from making me a bit frustrated, it makes me pee more often than necessary - and think about "the region" which doesn't feel as "automatic" as it did some months ago.

So now I'm back on kegeling-exercises every day.

Any other suggestions, experiences?

Martin
Born 1950.
Danish, lives in Denmark.
PSA preOP 6,5 - 6 - 5,5
Dx: Jan. 2017. 3 of 10 pos.
Gl. preOP (biopsy) 3+5 = 8
RALP 2-28-17
Prostate 96 g. Cancer contained. Clean margins.
Gleason adj. to 3+4 = 7
Cath out 3-10-17
PSA 3 months post: Undetectable. Yeah!
Dry, though small setbacks still can be experienced: An unexpected drop suddenly on it's way ...
ED not solved yet.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6746
   Posted 11/10/2017 7:24 AM (GMT -7)   
My uro tells me that "Kegels are forever!"

After 8 years, I've found that to be correct.
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/09
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 9/12-3/13, 6/14 to present
Prolia 6-mo inj 12/12 to present
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-8/17
Taxotere 10/17-?

MartinP
Regular Member


Date Joined Mar 2017
Total Posts : 37
   Posted 11/10/2017 7:32 AM (GMT -7)   
Seems your uro and my uro agree ...
Born 1950.
Danish, lives in Denmark.
PSA preOP 6,5 - 6 - 5,5
Dx: Jan. 2017. 3 of 10 pos.
Gl. preOP (biopsy) 3+5 = 8
RALP 2-28-17
Prostate 96 g. Cancer contained. Clean margins.
Gleason adj. to 3+4 = 7
Cath out 3-10-17
PSA 3 months post: Undetectable. Yeah!
Dry, though small setbacks still can be experienced: An unexpected drop suddenly on it's way ...
ED not solved yet.

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4895
   Posted 11/10/2017 7:53 AM (GMT -7)   
What 142 said. My Uro said the same thing. I don't do them S often but I do them at least once a day. Believe it if not, there's an app for that... "kegel trainer" I use it to set reminders 3 x a day, then just do it when I feel like it. The app is free
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margivns, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033
Decipher test, low risk, .37 score

samster
Veteran Member


Date Joined Oct 2011
Total Posts : 518
   Posted 11/10/2017 7:58 AM (GMT -7)   
Hang in there...
Early on we do everything we are told... watch the fluid intake, restrict alcohol, watch the caffeine intake, get lots of exercise, do the kegels, etc. And speaking only for me as things improved it was easy to "slack" off a bit until there is a "reminder."
Evaluate what you may be doing differently now versus early on. May require a simple easy change to get you back to where you want to be. For me, it's caffeine.
All the best to you.
Family history of PC
Father died on 2/16/2006 about 16 years after being diagnosed. Courageous man.
My PSA 3.04
Diagnosed at 54 October 2010
3/12 biopsies 5% 10% 15%
Gleason 3+4
open Surgery February 14th, 2011 Cleveland Clinic
Dr. Eric Klein
Negative margins/lymph nodes/seminal vessels/etc.
Continent
No ED issues
Non-detectable

Howard3569
Regular Member


Date Joined Nov 2014
Total Posts : 259
   Posted 11/10/2017 8:18 AM (GMT -7)   
Hang in there
Surgery Nov, 14 2014 Negative margins, negative lymph nodes, negative vessels
Gleason 3+7 PSA .08 Dec 14, 2004; <0.05 on March and July 2015; 0.05 on Oct 2015 and 0.07 on January 2016, .06 on July 2016 and .10 on Oct 2016

MartinP
Regular Member


Date Joined Mar 2017
Total Posts : 37
   Posted 11/10/2017 8:38 AM (GMT -7)   
Thanks for all good advices. Nice to feel I'm not alone in this ... smile
Born 1950.
Danish, lives in Denmark.
PSA preOP 6,5 - 6 - 5,5
Dx: Jan. 2017. 3 of 10 pos.
Gl. preOP (biopsy) 3+5 = 8
RALP 2-28-17
Prostate 96 g. Cancer contained. Clean margins.
Gleason adj. to 3+4 = 7
Cath out 3-10-17
PSA 3 months post: Undetectable. Yeah!
Dry, though small setbacks still can be experienced: An unexpected drop suddenly on it's way ...
ED not solved yet.

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2586
   Posted 11/10/2017 10:17 AM (GMT -7)   
I can relate to what you are describing, the situation sounds somewhat similar to mine, except mine has remained steady from about end of year 1 or so until now, almost 4 years post op. Then again, I am absolutely terrible at keeping up the Kegels. I really have not done them at all regularly for years now. Probably because I can't really tell much difference since I stopped. But I am doing some right now out of guilt! LOL! If I could just remember to go back to the regularly, maybe my minor remaining problems would disappear? I doubt it, but maybe!

You describe "Now I get some of the annoying feelings again which I had during the first months postOP: Feeling that a drop is almost on its way. Feeling that I have to tighten my pelvic floor consciously when doing certain movements". I get similar "feelings" 3 or 4 times a day normally. But it seems to have nothing to do with how full the bladder is, or if it has been hours since I emptied, and little to do with movements, other than 1 specific movement: getting up from a chair. Often especially if I "jump" up. So that makes sense, right, not surprising that- if I don't Kegal/clamp down- that all that pressure from rapidly getting up from sitting would force some out? But hold on, it usually does not happen until about 30 seconds later. And I think by that time there is not any extra pressure from the movement upward. But I feel something happening inside me, and know escaped drops are right at the door. It feels like a muscle has decided to contract on it's own. It feels like at the base of what is left of my penis, but I suppose it is actually the bladder deciding to spasm. Why it does so even after 4 years is a mystery. I suppose it is some sort of vagal(vagus nerve) response(that is the nerve that sets off the events that cause a strong man to pass out if he sees a needle, for example. Can also cause urination, sweating, slow heart, etc, etc) I know it is vagal related because anti-cholinergic(block the body's acetylcholine) drugs(aka anti-vagal) such as Vesicare(?) put an almost total stop to the problem. But since they are- like atropine and Robinul- blockers of acetylcholine, it has many of the same influence on other bodily functions. IOW, dry mouth(any one remember having a real dry mouth associated with either pro-op meds or surgery post op? Caused by Robinul or Atropine usually.

So it is some sort of weird screwed up vagal deal in my bladder or the muscles surrounding the urethra, or both. And, apparently at least, it has nothing to do with the strength of my pelvic muscles or sphincter. Since very soon after the catheter came out, I have been able to- while pissing like a race horse with a maximally full bladder, been able to instantly stop the fullest stream on command, repeat and do it again multiple times. I discovered this while training myself to exercise the correct muscles. They got stronger I'm sure, but they were always OK at least. I am convinced- in retrospect- that most of my incontinence during the 1st 6 months to a year, was not weak muscles nearly so much as a very frequent involuntary contraction of these bladder or whatever muscles. It would appear this is not going away for me. I still don't normally wear any pad, so it is not a huge problem, more of an irritant. When it happens, sometimes it requires a quick and max effort kegel to hold it in, and often a drop or 2 escapes anyway.

I don't know if your problem is of a similar origin, or totally different. I don't recall anyone else here having my exact same problem, at least not spelled out like that. So, maybe it is rare for it to last, and even if this is what is happening with you, there is a good chance it will finally stop. Good luck, and keep up the good fight!

Post Edited (BillyBob@388) : 11/12/2017 4:26:53 PM (GMT-7)


MartinP
Regular Member


Date Joined Mar 2017
Total Posts : 37
   Posted 11/11/2017 12:31 AM (GMT -7)   
Thanks again - and to you, BillyBob for your long story. I guess I'll keep on kegeling and increase the ratio of decaf vs "real" coffee smile
Best of luck to all.
Born 1950.
Danish, lives in Denmark.
PSA preOP 6,5 - 6 - 5,5
Dx: Jan. 2017. 3 of 10 pos.
Gl. preOP (biopsy) 3+5 = 8
RALP 2-28-17
Prostate 96 g. Cancer contained. Clean margins.
Gleason adj. to 3+4 = 7
Cath out 3-10-17
PSA 3 months post: Undetectable. Yeah!
Dry, though small setbacks still can be experienced: An unexpected drop suddenly on it's way ...
ED not solved yet.

Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 204
   Posted 11/11/2017 5:43 AM (GMT -7)   
Martin, I had my surgery two weeks after you and I experiencing the same exact thing trying to cut my coffee back to two cups a day I was blaming the Lupron but guess I can't do that anymore if your having the same symptoms Gotta get back to a 100 % control before I start my Radiation in Dec.

Larry
Male 61 DX @ 60
Father had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Path Report: Gleason 9, pt3b, Seminal vessels and one nerve removed, negative margins, 35 lymph nodes removed no cancer, Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
10-11-17 psa 0.16
10-12-17 Lupron started

MartinP
Regular Member


Date Joined Mar 2017
Total Posts : 37
   Posted 11/11/2017 6:58 AM (GMT -7)   
Skypilot, I guess it's very difficult to conclude anything from another persons disease-story. Hope you'll be alright when your radiation starts.
And by the way: I also got an umbilical hernia, which luckily enough didn't incarcerate. I'll have it operated on Tuesday smile
Born 1950.
Danish, lives in Denmark.
PSA preOP 6,5 - 6 - 5,5
Dx: Jan. 2017. 3 of 10 pos.
Gl. preOP (biopsy) 3+5 = 8
RALP 2-28-17
Prostate 96 g. Cancer contained. Clean margins.
Gleason adj. to 3+4 = 7
Cath out 3-10-17
PSA 3 months post: Undetectable. Yeah!
Dry, though small setbacks still can be experienced: An unexpected drop suddenly on it's way ...
ED not solved yet.

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 856
   Posted 11/11/2017 9:55 AM (GMT -7)   
Sigh. I've recently had two instances of urine leakage at night so back to underwear and a pad.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
10/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

MartinP
Regular Member


Date Joined Mar 2017
Total Posts : 37
   Posted 11/12/2017 1:49 AM (GMT -7)   
Yeah, sigh-sigh, why does it take so much patience to have or have had diseases? :-(
Maybe you'll learn something from it (the buddhists might say so) - I'm just not sure what ...

In Danish we have an expression: "The age of repair", meaning that we more (and more) often get all kind of health problems getting older that need treating. What is the similar expression in English? (There must be one ...) smile

Anyway drip or no-drip, let's enjoy this Sunday. And thanks for all your kind answers.
Born 1950.
Danish, lives in Denmark.
PSA preOP 6,5 - 6 - 5,5
Dx: Jan. 2017. 3 of 10 pos.
Gl. preOP (biopsy) 3+5 = 8
RALP 2-28-17
Prostate 96 g. C contained. Clean margins.
Gleason adj. to 3+4 = 7
Cath out 3-10-17
PSA 3 months post: Undetectable.
Dry, though setbacks can be experienced: A drop suddenly on it's way ...
ED not solved, but now and then: better.
Umbilical hernia post op. OP 11-14-17
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