Incontinence Issues - 6.5 Months and Counting

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MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 2/17/2011 7:38 AM (GMT -6)   
I feel like my bladder is governed by a sphincter that is on a hair trigger. One twist here or there, touch my underwear to adjust my pad and I leak a bit out. Is that the same for others who tool longer than 6 months to become continent? This is getting discouraging at 6.5 months after surgery when so many are done with this incontinence thing at 3 months or less.

A post from Worried Guy to me a few weeks ago made me anxious regarding how he found that progress had stopped for him at some point. The down side of measuring pad input is that when progress is slow, you can tell right away from the pad weight. I have been dropping down below 10 ml per 13 hours on my one work pad. The below 10 ml trend started on January 18th. I have had a string of a few days in a row of below 10 ml and then it stopped. I am now back to the low teens. (11 to 14 ml) I thought for sure the trend would stay below 10 and continue to drop.

It is extremely SLOW progress as compared to the progress I made during the first 4.5 months when my pad volume was cut in half with each passing month. I am at a snails pace right now. Is that common to have a very slow gradual end to the dripping and weeping??? Any insight is appreciated from those who went down a similar path. I am getting depressed about this.
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
9/15/10 1st post op PSA >0.1 undetectable
3/11/11 PSA - TBD
Incontinence - very slow recovery
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Feb 2011 1 pad all day - pad at night for some small urge incontinence leaks
ED: slow recovery

natural44
Regular Member


Date Joined Dec 2010
Total Posts : 172
   Posted 2/17/2011 8:36 AM (GMT -6)   
Mike, Have you tried the Magnesium 250mg daily yet? Magnesium helps relax the bladder walls so it can hold more volume at higher pressures so as to take the pressure of the hair trigger sphincter. This works well for some but this may not be the problem for you, it is worth a try seeing as it only cost about 5 bucks.

PS: do not exceed the 250mg /day dose
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3
pathology report clear
11-1-10 PSA 0.02
3 month 0.00
bladder control good
Osbon pump works but uncomfortable to use ring
some noctural erections, but not very strong,more like hanging looser and/or lower
tried all oral meds and nothing yet
Dr. R. Saint in Tulsa did my procedure, I do NOT recomend him!!

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 2/17/2011 10:21 AM (GMT -6)   
Thanks, I will consider that option. Right now I need some feedback as well on just how slowly or quickly the dribbling/weeping ends. I am so close I can nearly grasp the idea of being without the pads, the planning, the watching how much and what I drink... You get the idea.

I had set goals on my calendar for when this would be over and those have all been erased now. Just trying not to get really depressed over this but it is hard.

Thanks again,
Mike S.
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
9/15/10 1st post op PSA >0.1 undetectable
3/11/11 PSA - TBD
Incontinence - very slow recovery
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Feb 2011 1 pad all day - pad at night for some small urge incontinence leaks
ED: slow recovery

natural44
Regular Member


Date Joined Dec 2010
Total Posts : 172
   Posted 2/17/2011 10:41 AM (GMT -6)   
I understand that completely, I was done witht he pads by 3 weeks. but I had to start shaking it hard and squeezing out the last few drops when I went...that was when I would leak was after I emptied the bladder and put it away I would drip a few more drops. Once I started that routine after every trip to urinate it was like physical therapy and the system learned what to do and I was done with the pads for good. but Good luck to you I am sure you will get there
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3
pathology report clear
11-1-10 PSA 0.02
3 month 0.00
bladder control good
Osbon pump works but uncomfortable to use ring
some noctural erections, but not very strong,more like hanging looser and/or lower
tried all oral meds and nothing yet
Dr. R. Saint in Tulsa did my procedure, I do NOT recomend him!!

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 2/17/2011 11:31 AM (GMT -6)   
Mike,
Thanks for sending me the note to "My journey" page. That woke me up. I had missed your post.

I see that you are a data guy too. Good! If I had your numbers a year ago I would have been delighted. I was leaking 200-300ml with a squirt at any unusual motion. Cough sneeze, lift, bend, talk, ...

10 ml is low but not zero. It does not even show up in the pad unless you weight it. I don't know where you live but we are up north where the air indoors is dry, <35% RH. I did an evap study (with water) and found that with cotton, Hanes briefs I will evaporate 8.8 ml/day. If my leak gets below that point I can go without a pad and only have a stain spot on my underwear as proof of leakage.

Next Tuesday will be the 6 week meeting with the Uro and I expect he will give me approval to start lifting things and being active again. Then we'll see how this device really works.

Good luck to you. May your pee plots be 2nd order polynomial rather than asymptotic.
Jeff

cyclingboy
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/17/2011 2:22 PM (GMT -6)   
ok data guys - I just started weighing pads today.  I am 6 days catheter free as of today, and still feel like a sieve.  the two pads today both weighed in at 40ml - I had one in for a 1 hour walk, and the other for 2 hours around the house.  seems like I am probably peeing more in the pad than in the toilet.  have any of you looked at this data as fraction of pee going to the pad? 
 
Mike, you are farther down the road than I am, so I can't give you any good advice.  At this point I am the one learning from you guys.  but I do wish you luck on that final last bit.
 
AB
AB
age 45
PSA 9/2010 = 4.2
biopsy 11/2010 - 3/12 cores positive, Gleason =3+3, 5% volume in positive cores
RP 2/1/2011
post-op path Gleason 4+3, organ confined, lymph nodes clear
waiting for follow-up PSA in 3/2011

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6945
   Posted 2/17/2011 3:47 PM (GMT -6)   
Mike,
 
I was at 1-2 pads per day at DaVinci + 5 months.
Then did IGRT, and went back up to 3-4 per day (DaVinci + 7 months)
Now I am stable at 1-3 (varies depending on activity) at DaVinci + 16 months.
 
Forget about expecting this mess to follow a calendar.

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 2/17/2011 4:19 PM (GMT -6)   
AB: You are just starting down this road my friend. Yep, you discovered it. The pad to bladder ratio is not in the bladder's favor. I did not start measuring until about a 1.5 months after surgery. My bladder held nothing, nada. However, one day I was standing in my kitchen and when I was perfectly still I noticed I was not leaking. That was the first sign I was gaining control. The next time was many weeks later when I walked the 1 mile from my train station to work and I actually had the feeling I needed to void. Sure enough, I urinated for a whole 4 seconds. So it is a process with some notable benchmarks. Keep coming back with questions. Lots of us can recall the answers from experience so you don't have to travel down an uncharted road.

OK, anyone else with long term urinary issues have some input on the latter stages of incontinence recovery?

Thanks for the replies to date.

Mike S.
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
9/15/10 1st post op PSA >0.1 undetectable
3/11/11 PSA - TBD
Incontinence - very slow recovery
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Feb 2011 1 pad all day - pad at night for some small urge incontinence leaks
ED: slow recovery

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 2/18/2011 1:27 PM (GMT -6)   
I wish I would have seen this post before posting mine. I feel alot better about my 2 weeks of leakageand pouring. When you read where guys were dry right out of catheter or shortly after, you feel like you're doing something wrong or a loser.
I don't weigh cause I'm just not that into details,sorry! Hopefully we will all be drier than a popcorn fart before ya know it!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 24gms
Biopsy 12 cores with 7 positive- left base,right base,left mid gland,right mid gland, left apex.
Gleason score of 7
First PSA 38.7 on10/05/2010
Second PSA 49.9 on11/23/2010
CT negative
Bone scan Negative
daVinci RRP on 01/25/2011 by Dr Mark G Delworth at Bethesda North Hospital.

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 2/18/2011 4:13 PM (GMT -6)   
DaSlink: no problem. It is just killing me now to make such painstakingly slow progress combined with the fear that this may be as good as it gets. This is especially the case since I picked a very gifted, high volume surgeon with a great incontinence and ED track record. 95% recovery on incontinence and >80% for ED. Being just 57 yrs old I should fall into the range of being able to fully recover. However still leaking.

Hope to hear about other long-term experiences with how slowly or quickly this dribbling and weeping ends.

Thanks,

Mike S.

PS - When you cite Bethesda North hospital I assume that is not in the Washington DC area? Never heard of that facility.
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
9/15/10 1st post op PSA >0.1 undetectable
3/11/11 PSA - TBD
Incontinence - very slow recovery
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Feb 2011 1 pad all day - pad at night for some small urge incontinence leaks
ED: slow recovery

Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 2/18/2011 11:31 PM (GMT -6)   
Mike, I am just over one year post op and leaked like a faucet (12+ pads per day) for the first 4 to 6 months and was down to one pad per day at 10 months. I had been lax with the kegels and started them again to see if I could lose the last pad. I was able to go some days soon after that with no pad but I still occasionally leak through the pants at times; some days the pad has to go back on. I think that I`m getting close though to continence. If you are as good as you are at 6 to 7 months, I would be pretty encouraged. There are a lot of fortunate guys who regained continence early, but there are a lot of us that did not.

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 2/19/2011 9:28 AM (GMT -6)   
Mike the hospital I talked about is in the Cincinnati area. The Uro-Doc that did my surgery has done over 1600 daVinci surgeries. It was a good thing too,because part of my bowel had attached itself the a hernia repair patch which was done in 2000.
I have every confidence in his ability(too late now if I don't) To get me through this. I am a little nervous about the possibility of radiation treatments,since my cancer was not contained. I just have to wait and see. Next PSA test is March 23rd.
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 24gms
Biopsy 12 cores with 7 positive- left base,right base,left mid gland,right mid gland, left apex.
Gleason score of 7
First PSA 38.7 on10/05/2010
Second PSA 49.9 on11/23/2010
CT negative
Bone scan Negative
daVinci RRP on 01/25/2011 by Dr Mark G Delworth at Bethesda North Hospital.

cyclingboy
Regular Member


Date Joined Feb 2011
Total Posts : 32
   Posted 2/19/2011 11:14 AM (GMT -6)   
I agree, you do hear about a lot of guys who were dry quickly, and it can be discouraging if you're not one of them. I am seeing now this will be a long long road. my data shows that I am consistently leaking 20 mL/hour, unless I am on my daily walk, in which case it's more like 40! it's better at night, though I think that's normal. At least now I have some sort of baseline measurement. I know it's early yet, 8 days catheter free.
AB
age 45
PSA 9/2010 = 4.2
biopsy 11/2010 - 3/12 cores positive, Gleason =3+3, 5% volume in positive cores
RP 2/1/2011
post-op path Gleason 4+3, organ confined, lymph nodes clear
waiting for follow-up PSA in 3/2011

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 2/19/2011 8:32 PM (GMT -6)   
Cyclingboy: I could have some weekend fun messing with your head, but I am by nature a kind and gentle person. (I would have insisted in my reply that you were in for a very, very long haul because after all, misery loves company) However seriously, at this point you really don't have any idea (none of us do) as to how long your incontinence will last. It might be a long road or a short one.

First order of business: slow down, breath and relax for a moment. I was in the same soggy shoes you were in 8 days from catheter removal. Every newbie on incontinence issue, foremost wants to know when will this nightmare be over? The short answer is, it is over when it is over. Time is your friend and enemy right now. Time is needed for your body to heal. Despite feeling ready to do stuff, the inside of you has been mangled, rearranged and reworked to give you the big yellow stream you paid so much money to your doctor to deliver to you. You have age on your side as far as healing and speedy recovery are concerned. Read the other posts on this issue. They all repeat the same mantra. It takes time to heal and the pelvic floor exercises help to recover sooner. The important thing to latch on right now is that healing internally is something you cannot control. You can control the number of Kegel exercises you perform. You can watch your diet. Control your exercise, sleep and other habits. But despite all this you cannot will healing to speed up. It will come when it is good and ready.

Find some humor in whatever situation befalls you. Some guys think it is funny to pee during a staff meeting without everyone else knowing it. Hey, whatever turns you on I guess..... I have done my share of cursing and crying over this and it has not made a bit of difference in shortening my healing time. I don't want to make light of all of this. It is no picnic and you will be frustrated, discouraged and pleased beyond words when you do see some progress. You will feel that it will never come to an end, even if that end is 5 weeks from now.

OK, 20 ml per hour so in a 12 hour day you produce 240 ml. My surgery was on July 20, 2010 and cath out on July 29, 2010. I am sorry, I did not keep pad data until Sept 3, 2010 which was around 1 month plus a few days after catheter removal. Recalling my early progress or lack thereof, I used and still use Depends Guards. I filled about 5 pads almost to the spill over point while awake (roughly 18 hours each day) I recall that a full pad could hold about 210 to 230 ml of urine. Oddly, if you filled a pad quickly it held less. If you filled it slowly, it would spread out and hold more overall. Recall lots of day with pads so full I waddled up the stairs to get to the bathroom to change it and clean up. Fun times...

By early September 2010 I started to keep track of my 13 hour work day and pad volume. I went back to work on August 16, 2010 which was 18 days after cath removal. All standing resulted in draining everything I had in my bladder into the pad. Sitting became the oasis for not leaking. I was lucky to get parking at work for 5 weeks so my serious 1 mile walk to and from my job to the train station for commuting started on Sept 20. Reviewing my pad data, I wore the same pad the entire day by the time I was walking again and my average pad input was around 125 ml each day. Pads were nice and plump and juicy by the end of a long work day.

I am writing way too long. To be brief, my pads input dropped to just over 100 ml in October, down to 43 the first half of November and to 24 during the second half of November. December was consistent at 17 ml per 13 hour work day. January dropped to 13 ml per work day and the first half of February I am at around 10 ml of fluid for a 13 hour work day. By HW standards, I am one of the "special ed students" in the prostatectomy class. Most guys get over this far sooner. However, some of us insist on dragging this out for as long as possible. Believe me it is not for the sympathy. We don't get much of that at home. Only a few of my work colleagues (women only) know about my special condition. They do convey positive concern that I recover soon.

One note of caution: Your immediate family will grow tired of your pad input reporting on a daily basis. I am only aloud to report my progress if I have something real to announce. Otherwise, the standard speech is, "try being a woman going through having a period on a monthly basis, not knowing when exactly it will arrive and always being caught unprepared when it does. Deal with blood instead and have it seep through your clothing sometime and see how embarrassing that feels." OK, I get it. If I ever had blood all over me I would claim I was stabbed by a crazy man and garner sympathy for the near fatal attack that I thwarted. My only defense against the potential embarrassment has been to wear black pants at ALL times. Despite the safeguard of wearing black. I never had an accident with leaking while at work.

So, keep me posted on your progress. Worried Guy will chime in as well since we are the unofficial pad weighing contingent in this group. Worried Guy is hard core and has the math and engineering skills to prove it. I am happy just to have a 1/2 month average let along complex statistics. It keeps us off the streets and busy. Need more very specific info that would bore this crowd to tears, I will provide a means to contact me for more support. Glad to be of help.

Take Care
Mike S.
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
9/15/10 1st post op PSA >0.1 undetectable
3/11/11 PSA - TBD
Incontinence - very slow recovery
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Feb 2011 1 pad all day - pad at night for some small urge incontinence leaks
ED: slow recovery

Post Edited (MikeS24) : 2/19/2011 7:35:39 PM (GMT-7)


DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 2/19/2011 9:42 PM (GMT -6)   
darn Mike ,kinda make me feel like a cry -baby :) My wife is already tired of the leak report. I have to admit, at first the leaking drove me nuts, just like my doc said it would. The more time dredges on it seems ,at least for me, the less aggravating it is. Now I realize that it will be done when it's done!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 24gms
Biopsy 12 cores with 7 positive- left base,right base,left mid gland,right mid gland, left apex.
Gleason score of 7
First PSA 38.7 on10/05/2010
Second PSA 49.9 on11/23/2010
CT negative
Bone scan Negative
daVinci RRP on 01/25/2011 by Dr Mark G Delworth at Bethesda North Hospital.

Roy123
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 2/19/2011 11:39 PM (GMT -6)   
Gentlemen,
Thank-you all.............for your posts on this incontinence issue.  I am just over 6 mos post-op and still hugely incontinent.  Pads are in the order of 6 or 7 per day.  I'm not weighing pads because it's virtually all in there.  Pad numbers may also be misleading because I use pads inside drugstore underwear.   At night, lying down, or sitting, I can feel the bladder store some urine.  If the distance to the toilet is close, I can void some of it, like an adult.  Otherwise, when moving, I have no bladder control.  I do Kegels religiously.   I guess my question is; Does anyone know how a former fractured pelvis might affect the outcome regarding incontinence?  My Uro said he had a helluva tough time with the surgery on account of old scar tissue. In fact I was turned down for DaVinci  because of the scar tissue and had to persuade an open surgeon to tackle the job.  I think on my next visit in April, he's going to want to start talking about an artificial sphincter.  Does anyone have any suggestions?  Similar to you all I really hate this current condition however, I would also prefer natural healing if it could be anywhere in the foreseeable future.  Thanks again.
Roy123
 
Dx 69
PSA 5.6, 5 of 12 cores positive,  Gleeson 4+3=7, Stage T2C
Surgery Aug 5/10, right nerve sparing
Cath out Aug 13/10
PSA Sept 16/10, 0.01, Nov. 18/10, 0.01
neg. margins, neg. lymph, neg. sem. vesicles

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 2/20/2011 6:40 PM (GMT -6)   
Roy123:  I am so sorry to hear that you are still leaking that much.  It makes me a bit ashamed to be barking about my small leak.  I wish I could offer some advice on what happens if you have previous scar issues.  First,  before you pursue surgery, I would try an incontinence specialist.  They are advertised as a center where urologist and physical therapist work on incontinence issues.  I read a few profiles of places that do this and they all seem to insist on pursuing non-surgical methods of control first.  I am a forum buddy with a guy about your age who was convinced that he would never gain continence and worked hard with a physical therapist.  He is 7.5 months out from surgery and just started having dry days.  He was a 12 pad per day leaker.  Was convinced he needed a AUS installed.  Forget the sling, he was set on getting control with the "big guns" by having an AUS put in.  Today he is thrilled with his progress and attributes the Kegels and the special exercises and manipulations done by his physical therapist.  I feel your concern about absolutely no bladder control.  I would not wait this out but talk to your doctor about getting you to a place that can try working this issue out non-surgically first.  After they work with you sufficiently, they will be in a good place to suggest that you stick with an exercise PT plan or really think about surgery.
 
I hope you find a way to work this out. 
Mike S.
Dx 56
Biopsy: Gleason 3+3=6, PSA 6.6 One core of 12 with 5% T1c
Surgery: July 2010 J. Hopkins
Pathology Gleason 6, Neg Mar, Neg LN, Neg Sem Vesicles
9/15/10 1st post op PSA >0.1 undetectable
3/11/11 PSA - TBD
Incontinence - very slow recovery
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Feb 2011 1 pad all day - 1 pad at night
ED: slow improvements

Roy123
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 2/20/2011 11:19 PM (GMT -6)   
Mike,
I really appreciate your interest. I've read your reply several times. I think that it is excellent advice. Just to make matters interesting; the surgery was done in Canada (I'm not disappointed with the surgeon because he saved me from readiation) and I'm now wintering in Arizona . I've seen Dr Salevitz at Mayo, in Phoenix, and all he could talk about was AUS. I'll call them back to see if they have a specialist/therapist; although when I first called with the problem he was their recommended physician.
You say you still have a "small leak" and I truly hope that situation evaporates for you (pun intended) at the earliest.
Roy123
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