Total Incontinence Six Weeks After PC Surgery

GerryE
GerryE Member Posts: 2
edited March 2014 in Prostate Cancer #1
I had robotic prostatectomy on March 10, with pathology report of "organ confined" and amazingly quick recovery. However, six weeks later I have total incontinence. Doctor says bladder sphincter should still kick in, and in any case we must wait at least 6-12 months before considering any corrective action. I wonder if anybody out there had total incontenence for many weeks which corrected itself thereafter. As you can imagine, I'm hoping for a little encouragement.

Comments

  • edmund
    edmund Member Posts: 19 Member
    #2
    I had LRP on Feb 2 and I am recovering well. I still am partially incontinent. I am starting to improve rapidly. I would say I was totally incontinent for about 3 weeks. I had a lot of soreness in the perineum for about 10 weeks. Once that soreness resolved I have been improving in control almost every day. My surgeon says that the body must heal and the control issue will resolve. I do the Kegel exerecises even though my surgeon does not think they help all that much(they will not hurt). I have resumed normal activity and use the male pads. I need about 3 every day and I wear a depend at night for protection. I am only damp in the morning and this too is improving. I can not lift or do strenous work without leaking. I have read that this can go on for a long time. Best advice is keep your spirit up. It will get better. You must be patient this will get better but it takes a lot of time.
  • tpelle
    tpelle Member Posts: 184
    #3
    edmund said:

    I had LRP on Feb 2 and I am recovering well. I still am partially incontinent. I am starting to improve rapidly. I would say I was totally incontinent for about 3 weeks. I had a lot of soreness in the perineum for about 10 weeks. Once that soreness resolved I have been improving in control almost every day. My surgeon says that the body must heal and the control issue will resolve. I do the Kegel exerecises even though my surgeon does not think they help all that much(they will not hurt). I have resumed normal activity and use the male pads. I need about 3 every day and I wear a depend at night for protection. I am only damp in the morning and this too is improving. I can not lift or do strenous work without leaking. I have read that this can go on for a long time. Best advice is keep your spirit up. It will get better. You must be patient this will get better but it takes a lot of time.

    Edmund: Regarding this sentence from your message -- "I do the Kegel exerecises even though my surgeon does not think they help all that much(they will not hurt)." At my surgeons recommendation shortly after my prostatectomy two years ago, I built up to doing 200 to 300 Kegels per day. After a while pains developed in the lower left abdomen. I believe, and the surgeon seems to concur, that the Kegels are probably causing the pain. Yet, an abdomen and pelvic CT Scan identified no irregularities. Even doing just a few Kegels now causes pain. And the pains subside when I stop the Kegels. Within six months after surgery, I was down to using only one pad per day. That's not bad, but leakage continues when I stand for a long period, such as shopping or yard work. The leakage increases when I do no Kegels at all. I guess my point here is that doing some Kegels is probably good. But, too many might cause problems. I would be interested if others have experienced a similar situation.
  • jweindel
    jweindel Member Posts: 10
    #4
    Gerry,

    I had RRP almost a year ago. I was pretty much incontinent after the catheter was removed (3-4 pads a day, never wore "diapers"). I was down to one or two pads a day after about 8-10 weeks, and quit using them altogether after about 3 months. I never regularly did the Kegel exercises, except for deliberately stopping and holding the stream while voiding. I think you should start seeing some improvement in this area pretty soon.

    Jerry
  • Writor
    Writor Member Posts: 1
    #5
    Gerry, I am 14 months on after RP and still incontinent, it is better than a year ago but no where near where i thought i would be. I don't dare go without protection. I had a great surgeon and although the surgery went well I was totaly incon for 6 months. We each heal at our own rates, i guess. I have found talkig to other men frustrating and helpful all at once.
  • bandonpaul
    bandonpaul Member Posts: 8
    #6
    Writor said:

    Gerry, I am 14 months on after RP and still incontinent, it is better than a year ago but no where near where i thought i would be. I don't dare go without protection. I had a great surgeon and although the surgery went well I was totaly incon for 6 months. We each heal at our own rates, i guess. I have found talkig to other men frustrating and helpful all at once.

    Writor. Please see my report on the artificial urinary sphincter I had implanted March 29, 2005. After healing sufficiently, the doc activated it exactly a month later. For the first few days I wore a panty liner 'to make sure', but now I am 3 full weeks past activation, and use NO pads. What a relief.
    More info? Email or phone me. (email for number.)
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #7
    bandonpaul said:

    Writor. Please see my report on the artificial urinary sphincter I had implanted March 29, 2005. After healing sufficiently, the doc activated it exactly a month later. For the first few days I wore a panty liner 'to make sure', but now I am 3 full weeks past activation, and use NO pads. What a relief.
    More info? Email or phone me. (email for number.)

    I'm new to this site. Where can I find your report on the artifical sphincter?
    Thanks
  • JohnMcPhail
    JohnMcPhail Member Posts: 2
    #8
    I am about 30 weeks post op and still have trouble with urine control. If I drink fluids often I use 7 pads per day. During this time I have had almost complete control for days at a time then just as suddenly, it all reteats. I do the exercises but not as often as I could. I believed that trying to hold it all the time was enough of a work out and that adding the exercise would just tire out the muscle more. I look forward to your comments. john
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #9
    Gerry,

    Now that you are a month further along, have you seen progress? I am very interested since I am about 4-6 weeks behind you with very similar experience.
  • blkdog
    blkdog Member Posts: 10
    #10
    Gerry,I have had a RP July 2004. I had terrible incontinence for the first 6 months, I am now down to one pad a day and have not needed them at night.It's been a slow process.Each week things are progressing. Hang in there and good luck
  • bandonpaul
    bandonpaul Member Posts: 8
    #11
    AuthorUnknown said:

    I'm new to this site. Where can I find your report on the artifical sphincter?
    Thanks

    G2G2G, Greetings!

    I am sorry to have not gotten back to the CSN network for several weeks, and then could have responded to your request. However, I will now gladly share my original message about the artificial urinary sphincter (AUS, for short), and give an update to the present. The original is as follows:

    "I had my RP December 22, 2003. During the following 6 months I had two dilations in the hospital OP surgery to allow my bladder to empty completely, very slow stream. Finally in August 2004 I had 'corrective surgery' to again open the sphincter which had partially closed due to injury during the RP ...then I had almost NO control and had to wear several maxi pads per day. March 29,2005 I had the AMS 800 AUS implanted, and believe or not, I watched every detail of the procedure because my doc set up a monitor for me. That was interesting, to say the least. What is GREAT about that procedure is the 100% success (dryness) when the doc set the operation into action April 29, just one month later. Although I am only one week into being completely dry (yes, I wear a panty liner 'to be sure') I can hardly contain myself for the freedom and security I feel. Sure, it's a bit odd to manipulate the gadget when I feel the need to pee, it's an unusually comforting experience to ...be dry while going about everyday life activities.

    I recommend every post RP person with incontinence problems to consider this proven effectual device.

    Anyone wishing to talk with me about my experience is invited to email me at 'bandonpaul03@yahoo.com' and we'll arrange a personal phone conversation.

    There IS a better way to handle post RP incontinence."

    Today is August 4, 2005, and I am more than happy to report that I am still 100% continent. The last 'protection' I used was panty liners for a week after the AUS was activated, and that was 'just to make sure.'

    For about three weeks after implant I had mild discomfort in the area where the AUS was implanted, and in the left side of my scrotum where the activating bulb is located. Now, the only discomfort I experience is when too tight jockey shorts rub against the tubing leading to the activation bulb. There is no pain when I press the activator bulb to urinate.

    The psychological comfort I have in knowing I won't leak, and can 'go' whenever I want/need to is overwhelming. It's hard to imagine that something so simple as 'keeping dry' can make you feel on top of the world.

    As I stated in my original message on the subject, you are welcome to email me with specific questions, or phone me at any time from 9 AM to 10 PM Pacific Time. Email me if you want my phone number.

    My very best wishes to you. Don't settle into the 'mulligrubs' (that is Southern for 'down in the dumps'), talk straight with your doc, he/she will walk you through to success.

    Yours, for good health,

    Paul Pearson
    'bandonpaul03@yahoo.com'

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