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Posted 11/26/2007 8:48 AM (GMT 0)
I think a lot of us suffering incontinence several weeks or months post-op need to hear from those of you who have been where we are, and are dry now.

A number of people on here have expressed the idea that those whose incontinence has resolved are reluctant to post here, not wanting to make the rest of us feel bad. I think that's probably true. But the fact is we need to know you are out there.

Can we have a sort of virtual show of hands? Let's see how many responses we can generate from those of you who were still leaking at 6 to 10 weeks post-op, but are now COMPLETELY pad free.

If you were one of those few who were dry immediately post-catheter, that's always great to hear, but it seems to me you fall in a somewhat different category.

How many of you were facing disappointment or desperation a couple of months after surgery, but are now totally dry? And how long did it take you?

Thanks
Posted 11/26/2007 10:28 AM (GMT 0)
Loup,

I've been reading the posts here since March 2007.

A LOT of patients here became continent between weeks 12 and 16 when at week 12 there was little if any control while walking more than 5 minutes.
I had no control at week 11 (not "completely desperate " but I entirely believed it would not change and I had prepared myself mentally to wear pads forever....)
  - and yet I was at zero pads at week 14.  It happens to a lot of RP patients.


I know from looking through posts from long ago that many people regain both Continence and Erectile Function and don't have anymore cancer issues and leave the forum.
We don't hear from them again and there is no evidence they are lurking.
As others have recently pointed out, the nature of this forum is that those that are still here generally still have problems. 

Some that regain their health do stay and try to help where they can.
Several are spouses of now healthy prostrate cancer patients.
I wouldn't dare start a list of these champions for fear of leaving someone out!
Many helped me through my darkest hours and are still here.
As you pointed out, we patients tend not to show our fears, doubts, and nitty-gritty details of our recovery to those around us.  It doesn't help us at all if we make them crazy too!
So we discuss problems here and it skews the appearance of recovery data.

Perhaps your plea will get some lurkers to drop us a note on how they are doing!
If not, you might try to mine more representative data reading old "Journeys."
Though recent comments from bluebird about threads becoming inactive over time concerns me more than a little! 
You probably should scour the net for Scientific Journal Articles.
All the recent research mentioned here is discussing
     - 95% recovery from incontinence at week 16.

I would personally recommend "elevator kegels" for you as they really helped me as I gained more pelvic floor muscle strength and coordination after week 9.  It is not just a vice grip you are building.  It is a recruitment pattern of an array of muscles that take turns supporting and communicating with your unconsciously controlled bladder valve.
(For more discussion of "elevator kegels," look for my thread "Zen and the Art of Symphonic Continence" under Other Topics in the index offered by Bluebird in helpful hints at the topo of the Prostrate Cancer page.)

Keep working on your Kegels and all of us here will hold you in
     - visions of tossing your dry pads.

CCedar
ICTHUS!

Posted 11/26/2007 1:00 PM (GMT 0)
Loup,

Keep the faith because things happen in weird ways. I was still wearing pads around 5-6 weeks post cath removal and one day at a soccer match somehow the pad fell out of my underwear and out of may pants there on the sidelines. Well after that I have been pad free! I will say at that point I was only wearing 1-2 thin pads a day but I had no extras with me and we were out for the day. I will also say I have not been doing kegals either and I am still dry with the occasional stress drops/leaks.   

Posted 11/26/2007 1:39 PM (GMT 0)
Loup,
Welcome to the forum. I was pad free by 10 weeks. I wasnt very good at doing the Kegel exercises on a regular basis post op but I did do them pre op. Maybe that helped. I dont do them anymore and am still dry.
Posted 11/26/2007 2:14 PM (GMT 0)
Loup

I went pad free at 20 weeks post surgery and probably could have started a few weeks earlier but it was a confidence mind set. I didn't leak real bad but would require a pad or two a day and would have some stress incontinence every now and again. As Cedar stated it happened for me really in that 12 to 16 week time frame where I felt that it came around a lot. Good luck in your journey.

Norskie
Posted 11/26/2007 4:49 PM (GMT 0)
I was pad free at 11 weeks. I think the bladder sling that was installed actually helped. I did the kegals for 2 months prior to surgery and I am still doing them 4 1/2 months post surgery. I can say that I always asked myself if it would ever end. I never had more than a squirt or 2 post surgery even when I did leak. Occasionally I will have some stress incontinence, or if I sit wrong, but it is never enough to go through my underwear. I feel that everyone is different with incontinence and ED issues.
Posted 11/26/2007 11:56 PM (GMT 0)

Hi everyone, I was dreading the incontinence when the catheter was pulled out, my Urologist said that 95% of his patients were continent after a few weeks, so that was reassuring, when the catheter was removed, I only dribbled a very small amount, but went home with a pad anyway, had a few dribbles over the next week, and one day after wearing a pad all day and not wetting it, I decided not to wear one. The first venture out without a pad was a nervous experience, I had the sensation of wetting myself but nothing was there.

Since then I am pad free, and apart for a few accidents have been continent since the first few days, I do find that doing Kegels now, aggravates the area, so don't do them anymore, and I am dry, I am about to start 36 treatments of Radiation therapy, and have been told that one of the side effects COULD be that incontinence comes back for a while, .......hope not!

Regards Mal.

Posted 11/27/2007 1:09 AM (GMT 0)

Hi loupdemer,

Took me 57 days from catheter removal to the first day without a pad. I was 70 years old at the time, but in relatively good shape other than for the cancer. I did (and still do) my kegels regularly and walked for at least 30 minutes every day. ED has been my only lingering after effect until quite recently, but with the help of 50 mg Sildenafil that has pretty much resolved itself. So, it took me about one full year to go from operation date to full recovery, but I feel better now then I did before this dreaded cancer hit me.

Now, the only downside to this whole disease are the stressful times when my 3 monthly PSA test results are due.

Hope your recovery will be swift and complete.

All the best to you.

Magaboo

Posted 11/27/2007 1:53 AM (GMT 0)
Hi loupdemer,

I was pad free after about 4 months but having positive margins I started radiation treatments a month later. As maldugs alluded to, during and after radiation treatments incontinence did return. I've been wearing one pad a day since (treatment ended 6/14/07) most of the time I'll have a couple of "spots" the size of half dollars. The other day I was shoveling some gravel for a couple of hours and my pad was half soaked, the worst it's been since last Jan./Feb.
Posted 11/27/2007 5:37 AM (GMT 0)

Hi Loupdemer,

Rick was dry at 4 months but in the last 3 weeks he has had some leaking. I try to watch for patterns and at first I thought it was when he was tired but then it started happening early in the day and we can't see any pattern as to why. He has continued to do his kegels all along but it just happens sometimes 2 to 3 times a week. Hang in there I'm sure it will get better.

Best wishes

Diana

Posted 11/27/2007 5:47 AM (GMT 0)
Thank you guys. The info you are sharing in this thread is exactly what those of us still going through early days need to know. Especially, Cedar Chopper, the way you summarized things is very very helpful. Thank you all.
Posted 11/28/2007 5:47 PM (GMT 0)
loup,
Cedar is right is that it normally tales 12 to 16 weeks to become dry. I actually became dry twice. At 8 weeks after catheter removal I stopped wearing pads. I would get a drop or two on my underwear at times but that was all. Then about a month after that I began painting and fixing up a house I bought to rent to my daughter. Apparently all of that activity caused something to change as my perineum started aching and I began leaking when exerting. I went back to a very light pad and wore that for about a month. Then within a couple of days the aching stopped and so did the leaking and I have been dry ever since.

Tamu
Posted Yesterday 2:14 AM (GMT 0)
I went almost 5 years using about 4 to 6 pads a day. This was due to the removal of the neck of my bladder. I fought the depression, the stress, the accidents, and finally had enough. I had an AUS installed, and have been vitually completely dry since. No more worries, no more accidents. And I'm saving a fortune on pads.
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