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Posted 1/16/2013 11:53 PM (GMT 0)
Three plus months post surgery, pretty much dry at night since catheter removal. Ok when sitting, but I actually have seen my incontinence get worse over last month..... When walking leak all the time, and if I do 30 minutes on treadmill I can pretty much fill up a nine oz. pad, this is worse than a month ago...been doing kegels at same rate since catheter removal. Any stories similar, also any encouraging stories about getting dry post 3 months, 6 months? My surgeon told me not to get discouraged...but have to admit I am....
Posted 1/17/2013 2:14 AM (GMT 0)
Riggy - I am eight months out and doing well but at your stage I was still incontinent with excersise. Even now - activity will give me urges. It all gets better slowly in starts and fits. I would NOT overdo Kegels. I actually got to the point that I was only doing them in the morning. If you are walking and on your feel all day I think that is as good as Kegels. I think overdoing Kegels weakens the muscle causes more leaking. Why don't you try a few days off.
Posted 1/17/2013 2:22 AM (GMT 0)
Riggy,

I think others will confirm that the transition to continence isn't a smooth, straight line. Sometimes you get worse before you get better. There are good weeks and bad weeks, good days and bad days. It doesn't mean very much; it's where you're at after a year later that matters.

I assume you're doing the kegels and avoiding drinks that aggravate your bladder. Other than that, it's just time.

Hang in there. Three months isn't very long. You can't really tell how you're doing after three months. Stay the course and see how you are in another couple months.

Wishing you dryness,

Jonathan
Posted 1/17/2013 3:33 AM (GMT 0)
Riggy, At 3 months I was dry at night and when inactive but will have dribbles especially when walking or lifting something. It kept getting better and finally no pad at 7 months. Drinking caffeinated drinks, beer and eating spicy and acidic foods used to make things worse. Be patient you will get there.
Posted 1/17/2013 2:51 PM (GMT 0)
I think I can do a ditto on Ed C's post. That sounds like my story. 3 months is pretty early in the game so you will get there. When I went in for some biofeedback sessions they had me doing those kegels with gentle squeezes at first. They showed me on the scope just how hard I should squeeze and I was surprised. I was trying to snap pencils in half and I just wasn't ready for that. I backed off and it seemed to help.

Don't surrender yet!
Posted 1/17/2013 3:41 PM (GMT 0)
Riggy, for the first two months I just dripped constantly. Around three months I improved just enough to have room to be inconsistent. Some days I leaked more than others. about that time I developed a theory about why I personally leaked. First, I noticed that I was passing bits of suture material in my urine. I took to carrying a tea strainer in my pocket to catch them. I noticed that I would leak worse and be more uncomfortable before I passed a bit of suture and that I would leak less and feel better after.

I created a thread (here) about my theory. Between my long-windedness and the commenters egging me on the thread became long and rather silly but it has some stuff to think about while you drip, including a link to a page with photos of my bits of suture.

I am five weeks out of adjuvant IMRT now and seven months out of surgery. In the last couple of weeks I am seeing real improvement which I attribute to the irritation that the radiation caused to my sphincter finally letting up.

The take away for you is that at three months you are not totally healed from your surgery. You may have bits of suture that aren't completely gone which may be irritating. Scar tissue tends to be puckery at three months and to smooth out later. Various things can irritate your bladder or the sphincter which are still sensitive from the surgery. You'll have good days and bad ones. As you continue to heal these things all tend to get better.
Posted 1/17/2013 4:10 PM (GMT 0)
i am 3 weeks out, and also am frustrated by leaking.

but i had a great talk with my surgeon who explained it like this...

where the ureter is disconnected to allow the prostate to be removed, it is very close to the sphincter muscle which stops urine flow. this screws up the nerve supply to this muscle.

the automatic opening and closing of this sphincter normally happens without concious thought; you just think go pee and stop pee and it happens.

that's all history now. those pathways that developed over years when we were children have been severed and will never be the same. your job is now to reteach the muscle to contract using different nerves. it takes time and effort to do this (months to years).

for now, you will need to conciously focus and keep the valve closed as you heal and learn how to control it. he said the kegels are not the end all, it is better to try to practice on using "5% or so effort" ALL the time and when you need to (when sneezing,coughing, etc) ramp it up to 100% effort.
with time it will be automatic.


this explanation seems to make more sense and is helping me, alhtough i still leak. caffeine and alcohol are bad, bad. i gotta keep bladder really empty for now. and FOCUS.

dave

2/2010 PSA 2.75 55 years old
4/2011 PSA 3.73
5/2012 PSA 5.31

11/2012 biopsy Gleason 3+4 56 years old (r base only) , 40% one specimen
12/2012 LARP 48 gm, cancer both lobes, pT3a extraprostatic extension R base, margins negative
gleason 4+3. lymph nodes negative (2)
Cath out 7 days post-op, +incontinent (improving), + ED
Awaiting tumor board recommendation on RT
1/11/2012 dry in morning.

Post Edited (Gasman1) : 1/17/2013 9:14:29 AM (GMT-7)

Posted 1/17/2013 4:25 PM (GMT 0)
Riggy, Hi from Across the Pond. Had my Robotic Procedure November 1st. Not quite 3 months but similar story. Dry if I don't move. Leak like a Sieve when I move. Using numerous pads. Exercising the Kagel Way. But it is frustrating. I remain Positive and get a Good Sense of Comfort, with this Forum. I would be Lost without it. Hang In there, Were All in the Same Boat. Light Will be at the End of the Tunnel. The Best of British Luck !.
Posted 1/17/2013 7:03 PM (GMT 0)
6 months out and still leaking BUT Ed issues are low and PSA is Zero!
I get very frustrated myself at times but I need to remember that
my main goal was to get the cancer out!!!
My surgeon said that my tumor was very large and was pushed up against
the bladder for quite sometime and it may take awhile for the bladder to realize
that the tumor is not there anymore. Also 10 slow Kegels every hour.

Thanks for posting. You are not alone.

Bill
Posted 1/18/2013 12:23 AM (GMT 0)
Riggy, at three months I was dry at night and while sitting just like you. Doing my day to day stuff I was fine with just pads; but going on our morning walk every morning I had to wear a depend. The depend was pretty full of it by the time we would get home. When I went in for my three week check up with my uro he asked about my pad use and I told him I was using two to four pads per day except for the walk when I had to wear a depend and really needed it. He gave that WTH look! Today I'm 99% continent and I never wear pads.

Hope everything works out for you
Posted 1/18/2013 1:32 AM (GMT 0)
Thx for all your feedback, desert rat, when did you start getting better, how many months...by the way , have 1st biofeedback session next Friday...
Posted 1/18/2013 2:54 AM (GMT 0)
Riggy,
Please post your thoughts on the biofeedback after your visit. I'm thinking of it myself.
Posted 1/18/2013 3:20 AM (GMT 0)
Will do
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