Does incontinence get worse after pump use?

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/3/2009 2:49 PM (GMT -6)   
Since about one month ago, I have been using a VED every day both to keep blood flowing and to reassure myself that I still have a pen*s. I had been traveling for the past few days and did not have the VED with me so I missed the daily treatment. During my trip I noticed that my incontinence seemed to be somewhat improved.
Last night, back at home, I used the pump and today I am leaking like a broken colander. I have regressed to where I was two months ago. What the?
Did anyone else have a similar experience? Should I stop the pump?

Jeff

(I know there are others here with PSAs moving in the wrong direction while I sit here complaining about pee pads and diaper rash. I realize I am a lucky guy - even with my constant leak.)
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 12/3/2009 3:07 PM (GMT -6)   
Jeff

do you do kegel? Richard has been doing kegel every 12 minutes since his catheter was out. seriously, every 12 minutes unless he is sleeping. doctor told him keep doing that until he has no leak. Richard has a timer with him all the times. I don't know that maybe helps?

regarding the diaper rash, Breastfeeding Cream By Lansinoh works the best, gentle, safe and heals the skin the best. that experience came from our little one's diaper rash fight.

Jennifer

clearwatercowboy
Regular Member


Date Joined Oct 2009
Total Posts : 135
   Posted 12/3/2009 4:12 PM (GMT -6)   
Jeff,

I will tell you that there are times when I use the VED that I will have considerable leakage that collects within the pump. I have also noted that on days that I missed using the VED that I had more leakage than normal. I have noticed however, that when I miss a day of using the VED, I also notice that I seem to struggle with getting a decent response with the pump, i.e., shorter and smaller diameter penis size, which tells me that, I probably should not skip a day. My Uro doctor yesterday reminded me that I need to continue to use it daily, as that will help promote the possibly of regaining erectile function on down the road.

So, I would suggest that you not cease using it, as that seems to create more problems later on.
Good Luck
Dallas
RRP May 04, 2009
Pre-op Gleason 6
Post-op Gleason 7


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/4/2009 5:38 AM (GMT -6)   
Ok. I guess since there was no outpouring of "that happened to me too"s, I will continue with the pump. I know it is the right thing to do. I just worried that by using the pump I was doing something to increase my leakage by yanking on bits that should not be yanked upon. (I thought that might be responsible for my 90 micron leaker hole in my bladder sphincter.)

Jennifer, Your husband is very dedicated indeed. I can only do kegels correctly when I am in bed or on the couch. If I do a kegel while sitting or standing, I squirt. While standing, the only safe place to do them is in shower or in front of the toilet.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/4/2009 9:17 AM (GMT -6)   
Jeff,

When I first started VED'ing, I would get some leakage in my pump, but it got better as time progressed. I think part of it was that I would try not to let it leak, so I had a little test lab environment where I could see if my pucker was working.

Occasionally I will skip a day or 2 based on time schedule, etc. I haven't seen any noticeable change in my leakage when not VED'ing.

I am concerned with your comments about not being able to kegel when standing up. That is precisely when you need the kegel control. I know I have mentioned it before, but there are some $50 type devices out there that allow you to monitor the pressure you are exerting, and I believe may help you on this kegel thing. I also found that there are several sites with different types of kegel techniques. The one Jennifer talks about is the Cleveland Clinic one. I just couldn't do it that way and work also.

Just my 2 cents worth buddy. I don't know of a more diligent guy on this site regarding incontinence. I just want to insure that you are squeezing what needs to be squeezed. I think the little monitor might help the engineer side of you.

Keep on puckering my friend !

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/6/2009 6:03 PM (GMT -6)   
Hey Goodlife,
I just got back home after spending the weekend walking around in the woods, supposedly deer hunting with a couple of friends. I didn't fill any deer tags. n the other had I was quite successful at filling pee pads. Climbing up a 12 foot deer stand was good for at least 150 ml!

That is good advice. I will snoop around and see if I can find this device.
I can tell you, I have been to the Physical Therapist for 4 times already and she says I am doing it correctly. I've was checked by both ultrasound, and an EKG like machine.

I am concerned that the surgery report detailing "significant bleeders" at my bladder sphinchter might mean I am in for a long haul. Also my biopsy indicated 70% involvement at the top part of my prostate.

I will continue to be patient until the end of January. That will be 6 months and time to admit that I might need to do something else.
(If it does not get better than this, I can still manage. I'll come up with some sort of clamp or plug or catheter that mounts to my shoes that both cushions my feet and keeps them warm and toasty in the winter.)

Thanks for adding a new meaning to my image of "Pucker up".

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 12/6/2009 6:17 PM (GMT -6)   
Jeff,


I was just wondering if you are able to retain anything when walking for a distance? I've had some minor improvement in the last week whereby I can get out of bed or up from a chair and make it to a nearby receptacle. Have to squeeze real hard and can only manage that for 10 or 15 steps. Otherwise, can't hold a thing. I'm coming up on two months since surgery and don't feel like I have made much progress.



Steve

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/6/2009 6:36 PM (GMT -6)   
Steve,

Thankfully, once in bed, I am dry. I can get up out of bed in the morning and make it to the bathroom. My loving wife yells after me "What a good boy!" when I empty anything on the order of 300 ml. I am writing all this down in case I need it for the divorce proceedings. (Actually we have been happily married 34 year. )
My problem begins about an hour later. Maybe my muscles get tired? I just start to drip when I'm vertical. I improved for the first 4-6 weeks and then it just flattened out. And here I sit, 4 months later, paying the college tuition for Kimberly Clarke's CEO's daughter at Swarthmore. I think I'll pee a little more now. I hear she needs new books this semester.

If you are a data guy, I can sent you my Pee Plot curve. It is depressing for two reasons: 1) It shows no improvement after 6 weeks, and 2) It certifies that I am truly a mental case.

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 12/6/2009 6:47 PM (GMT -6)   
Yeah Jeff, that's about where I am. Funny, I get a "Good Boy, sounds like a stallion in there" too! And that's about as far as my "stallion" goes.


Steve

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/6/2009 6:52 PM (GMT -6)   
My stallion is now "My Little Pony". Oh well...
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


Mike E
Regular Member


Date Joined Oct 2009
Total Posts : 23
   Posted 12/6/2009 9:13 PM (GMT -6)   
My situation sounds similar to some of you. After 2 months, I usually make it through the night dry and can get to the toilet in the morning without incident (leakage). I do all right when seated, too, as long as I can get to the toilet within a few seconds. (This is impossible at work.) Furthermore, when I am vertical, I have almost no control (truly a bummer at work--I have soaked through my suit pants twice this past week.) This get very discouraging. I am now buying pullups at Costco and lots of pads at Walmart. I am interested in this Kegel measuring device. Sometimes I wonder if they are doing any good.

On another matter, some of you are talking about a VED device. I have never used one, but am wondering if I should consider. Is this something that a doctor is to prescribe? Mu uro never mentioned it. He just has me starting on Viagra (100 mg.) at the end of this week. Am I missing something?

Mike
Age 56
After several years of being treated for on and off prostatitis, my PSA stopped responding to Cipro...
PSA: 2.56 (up from 1.6 over a year and a half)
Bone Scan: negative
Biopsy: 8/21/09 6/12 plugs were positive for cancer
open RRP done at Johns Hopkins: 10/7/09
Upgraded Gleason to 4+5 = 9 (from an 8)
Tumor extent: Moderate
Margins: Positive 1 mm
Extraprostatic Extension: could not be distinguished because of incision site
No seminal vesicle or lymphatic invasion
Stage: pT2x
11/21: Incontinence- mostly dry at night, but little progress during the day, multiple pads
ED: Nothing but fleeting twinges of hope every now and then


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/7/2009 6:33 AM (GMT -6)   
Hi Reedy,

I was prescribed a VED pump at my 6 week check up. Mine is from Augusta Medical. about 80% of the cost was covered by insurance so my out of pocket was about $75.
I few guys here bought less expensive (but equally effective) units from adult shops for less than $50.

One of the guys on this site started a site for discussing certain aspects of our journery that are not suitable for mixed company. It is called franktalk.org. There are many discussions about the merits of different pumps and treatments.

Good luck.
May all our pants be as dry as the Sahara.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.

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