Want to hear from any who had radical prostatectomy

JR1949
JR1949 Member Posts: 230
edited March 2014 in Prostate Cancer #1
Hi,
I am 60 and had radical prostatectomy March 09. I still have incontinence...using 3-4 pads daily. I cannot even think about sex until I get rid of the incontinence. I have tried kegels at least 30 times, twice a day. Maybe I need to do more...getting a little frustrated now. My next followup visit is in October. Plan to discuss with my urologist.
I just want to know what your experience has been if you had radical prostatectomy. I read these blogs about being continent in less than a month and I think "wish I could say that".
Thanks in advance.
JR1949

Comments

  • lshick
    lshick Member Posts: 62
    #2
    RP experience
    You and I are the same age, and had surgery within a few days of each other.

    The Kegel routine of 30x2 is about what my Dr recommended, but make sure they're "quality" Kegels, you should really grip. FWIW, my Dr recommended a set of long Kegels (10 sec.x10) and short Kegels (1 sec.x10) 2-3 times a day.

    But it is possible to over-do it. If you tire out the PC muscle, you'll create more problems (at least in the short term) for yourself.

    Patience. If your Dr felt that he did the nerve-sparing thing, you can take hope that there are guys who continue to improve in this department more than a year after surgery.

    Dunno whether my experience will be of any value to you, but it's at http://www.sv-moira.com/ProstateCancer.htm

    Good luck.

    Larry
  • saoco
    saoco Member Posts: 43
    #3
    Incontinence.Hi JR1949 Iam
    Incontinence.Hi JR1949 Iam sorry you have still incontinence after seven months.one question I have did you have open surgery?I have a friend whom I told not to do open surgery and it is been more than two years and he is in the same bote you are.I had LAPROSCOPY surgery and also my brother and no incontinence.I have read many posted from the group about this problem I hope you will find the cure for it my prayers are with you.
  • Ratred
    Ratred Member Posts: 2
    #4
    lshick said:

    RP experience
    You and I are the same age, and had surgery within a few days of each other.

    The Kegel routine of 30x2 is about what my Dr recommended, but make sure they're "quality" Kegels, you should really grip. FWIW, my Dr recommended a set of long Kegels (10 sec.x10) and short Kegels (1 sec.x10) 2-3 times a day.

    But it is possible to over-do it. If you tire out the PC muscle, you'll create more problems (at least in the short term) for yourself.

    Patience. If your Dr felt that he did the nerve-sparing thing, you can take hope that there are guys who continue to improve in this department more than a year after surgery.

    Dunno whether my experience will be of any value to you, but it's at http://www.sv-moira.com/ProstateCancer.htm

    Good luck.

    Larry

    Prostate Surgery
    Hello,

    My surgery was Dec 12, 2008, just got off the pads Labor day weekend. I did the exercises and still do taoday. It's different for everybody the doctors can only advise you from the experiences of their patients.
  • kreinholt
    kreinholt Member Posts: 35
    #5
    I know your situation
    I too had surgery in March 09 and still have not yet beat the incontinence. I still do my Kegals 2 times a day 10 sec X 10 reps which may or may not be enough, but since March I have seen a gradual improvement. Some days seem worst than others, however, the improvement is noticeable as I can hold it longer than I used to before I get to a restroom. I could already hold large amounts like when I get out of bed in the morning, but I have also made it a habit to go every time I get up and walk just to keep the pad as dry as possible. I sit at a desk most of the time at work so that makes it manageable during the day. I still have to do a little pre planning in whatever I do each day, but I haven't let it slow me down much. Unfortunately it is something that you are always aware of and cannot let your guard up. I am still holding a glimmer of hope that someday I too can say that I am off the pads.
  • JR1949
    JR1949 Member Posts: 230
    #6
    kreinholt said:

    I know your situation
    I too had surgery in March 09 and still have not yet beat the incontinence. I still do my Kegals 2 times a day 10 sec X 10 reps which may or may not be enough, but since March I have seen a gradual improvement. Some days seem worst than others, however, the improvement is noticeable as I can hold it longer than I used to before I get to a restroom. I could already hold large amounts like when I get out of bed in the morning, but I have also made it a habit to go every time I get up and walk just to keep the pad as dry as possible. I sit at a desk most of the time at work so that makes it manageable during the day. I still have to do a little pre planning in whatever I do each day, but I haven't let it slow me down much. Unfortunately it is something that you are always aware of and cannot let your guard up. I am still holding a glimmer of hope that someday I too can say that I am off the pads.

    Your experience sounds a lot like mine
    I too have had some days that are worse than others...seems like the old saying "take one step forward, 2 steps back". My situation has improved. I can hold it longer. Going to the bathroom every time when you get up sounds like good advice...thanks. Do you have a problem every time you squat or stretch your legs with leaking? Like you I have do a little planning in whatever I do each day. I am still using Depends and Poise pads for security and sometimes I carry extras with me.
    I too am holding onto a glimmer of hope.
  • lion1
    lion1 Member Posts: 241
    #7
    JR1949 said:

    Your experience sounds a lot like mine
    I too have had some days that are worse than others...seems like the old saying "take one step forward, 2 steps back". My situation has improved. I can hold it longer. Going to the bathroom every time when you get up sounds like good advice...thanks. Do you have a problem every time you squat or stretch your legs with leaking? Like you I have do a little planning in whatever I do each day. I am still using Depends and Poise pads for security and sometimes I carry extras with me.
    I too am holding onto a glimmer of hope.

    Still Incontinent
    JR1949,

    LRP 6 Jun 2006, that's right 6/6/6. Still incontinent, but very active--49Yrs Old, eventually I will right my book. The experiences that I have had whehter stuck in traffic or walking thru Boston and New York are the stories that would push people to go get AUS or Sling much sooner than I have held off on. But, I guess I am not ready to make that decision, not to mention insurance that will not cover the good doctors out of network.

    Everyone goes through their own hell.

    Lion1
  • JR1949
    JR1949 Member Posts: 230
    #8
    saoco said:

    Incontinence.Hi JR1949 Iam
    Incontinence.Hi JR1949 Iam sorry you have still incontinence after seven months.one question I have did you have open surgery?I have a friend whom I told not to do open surgery and it is been more than two years and he is in the same bote you are.I had LAPROSCOPY surgery and also my brother and no incontinence.I have read many posted from the group about this problem I hope you will find the cure for it my prayers are with you.

    Incontinence-RP
    Hi, I had radical prostatectomy open surgery, nerve sparing. Because of my high PSA 22 and Gleason of 7, discussions with my Doc and my wife we all decided that RP open surgery was the best for me. Guess was best route for me 'cause my last PSA was 0.008.
    As you said maybe they will find a cure for incontinence for men who go RP open surgery.
    Thanks, saoco, yours prayers are welcome. With my wife's and family's support and prayers from all I know I am blessed.
    JR1949
  • luckyman2
    luckyman2 Member Posts: 54
    #9
    lion1 said:

    Still Incontinent
    JR1949,

    LRP 6 Jun 2006, that's right 6/6/6. Still incontinent, but very active--49Yrs Old, eventually I will right my book. The experiences that I have had whehter stuck in traffic or walking thru Boston and New York are the stories that would push people to go get AUS or Sling much sooner than I have held off on. But, I guess I am not ready to make that decision, not to mention insurance that will not cover the good doctors out of network.

    Everyone goes through their own hell.

    Lion1

    Incontinence after radical prostatectomy
    You will see that it is different for every man who has gone through this. My prostectomy laparoscopy surgery was done in November 2007. I was doing Kegels years before due to back surgery and it helped me get through most aspects of the incontinence within six months. I remember that I was able to hold my urine immediately after having the catheter removed. However I wanted to wear a life jacket to bed during the first couple of weeks, because I just couldn't wake myself up in time to make it to the bathroom.

    May I suggest that you also try doing Kegels while actually urinating. That is to say, try to shut down the urine stream about five times while sitting on the toilet. (I say sitting on a toilet rather than standing at a urinal because you won't get any on your shoes while doing this!)

    You might find that certain movements, such as getting in and out of a car, will result in a bit of squirting. You will be surprised at how quickly you will adapt. I do my Kegel exercises every day. It does get better with time.
  • JR1949
    JR1949 Member Posts: 230
    #10
    luckyman2 said:

    Incontinence after radical prostatectomy
    You will see that it is different for every man who has gone through this. My prostectomy laparoscopy surgery was done in November 2007. I was doing Kegels years before due to back surgery and it helped me get through most aspects of the incontinence within six months. I remember that I was able to hold my urine immediately after having the catheter removed. However I wanted to wear a life jacket to bed during the first couple of weeks, because I just couldn't wake myself up in time to make it to the bathroom.

    May I suggest that you also try doing Kegels while actually urinating. That is to say, try to shut down the urine stream about five times while sitting on the toilet. (I say sitting on a toilet rather than standing at a urinal because you won't get any on your shoes while doing this!)

    You might find that certain movements, such as getting in and out of a car, will result in a bit of squirting. You will be surprised at how quickly you will adapt. I do my Kegel exercises every day. It does get better with time.

    Incontinence after RP
    I have started doing my Kegels regularly and more at a time and seems to be helping. However I still have a little occasional leaking and any squatting puts pressure on my bladder and causes "squirts". I know it will gradually get better with time from what I have read on this bulletin board. I am going to try your method of Kegels when I urinate, sitting down of course :-).

    The crazy thing to me is that I always go to bed with a fresh pad and I have to get up and urinate 3-4 times during the night, but I have a dry pad when I wake up the next morning, yet during the day I still have occasional leaks without feeling the need to go to the bathroom and change pads pads 3 times a day :-(. Like you and several others have said it seems to affect some men differently
  • lion1
    lion1 Member Posts: 241
    #11
    JR1949 said:

    Incontinence after RP
    I have started doing my Kegels regularly and more at a time and seems to be helping. However I still have a little occasional leaking and any squatting puts pressure on my bladder and causes "squirts". I know it will gradually get better with time from what I have read on this bulletin board. I am going to try your method of Kegels when I urinate, sitting down of course :-).

    The crazy thing to me is that I always go to bed with a fresh pad and I have to get up and urinate 3-4 times during the night, but I have a dry pad when I wake up the next morning, yet during the day I still have occasional leaks without feeling the need to go to the bathroom and change pads pads 3 times a day :-(. Like you and several others have said it seems to affect some men differently

    3 YRS LATER --COULD KEGELS STILL HELP-IS LEAKING.....with
    I have been through the whole gambit of treatments, bio feedback---pills, but could kegeling do anything for you after 3 yrs of incontinence--I haven't heard anyone in this boat who said this was still an option. I tried these pills for a contracting bladder--no help. My doctor stated that after my URODYNAMICS now done twice by two different Doc's that my bladder was contribuing to my incontinence. The leaking does baffle me because it must mean my sphincter isn't doing the job. Yet, if my bladder wasn't contracting, would I not leak as much???

    It seems that a lot of guys who have experienced what I have, have had the Sling and for the most part it worked.

    But, the concerning part about that is many say---they were on 5-6pads a day, then after the Sling---only one pad a day.

    To all the men who are wearing one pad it sounds great compared to 5-6 pads. But is leaking, leaking regardless---because I have read the experience of other men who had to use one pad a day and had surgery because they stated that leaking is leaking regardless of the pad use.

    Again everyone is different--but what drives a person to finally decide on a SLING.

    What if you keep on leaking?? What if you're active and you end up knocking it out of place??

    Just want to generate some responses to all of you having different experiences.

    Lion1
  • kreinholt
    kreinholt Member Posts: 35
    #12
    JR1949 said:

    Your experience sounds a lot like mine
    I too have had some days that are worse than others...seems like the old saying "take one step forward, 2 steps back". My situation has improved. I can hold it longer. Going to the bathroom every time when you get up sounds like good advice...thanks. Do you have a problem every time you squat or stretch your legs with leaking? Like you I have do a little planning in whatever I do each day. I am still using Depends and Poise pads for security and sometimes I carry extras with me.
    I too am holding onto a glimmer of hope.

    I do still have issues with
    I do still have issues with stress incontinence such as sneezing, coughing, etc. and occasionally when I stretch my legs at my desk. I also am active in Karate and surprisingly I don't seem to leak as much when I am going through the kicking motions. I do sweat a lot so maybe all the liquid is going through my pores and not my bladder. Not sure if it works that way, but whatever is happening it allows me to enjoy my training without having to worry about filling up a pad and leaking while I am standing and moving during class. I do take the precaution of using a fresh pad before class though. Again, I have seen a dramatic improvement since March and am still encouraged when I seem to be able to hold it now when I couldn't in the past. For example, it takes me approx 20 - 30 minutes to drive to work, which is normally when I do my Kegals, to and from work. When I would get out of my car, I could not hold the 30 minute build up until I got into the building to get to a restroom. Now I can hold most to all of it before I get to the restroom, with maybe a trickle along the way. I consider that a battle won but I still have battles to fight before I can declare the war a victory. Even though I had hoped that my progress would be much quicker than it has been, the progress I am making still keeps my spirits up.
  • lion1
    lion1 Member Posts: 241
    #13
    kreinholt said:

    I do still have issues with
    I do still have issues with stress incontinence such as sneezing, coughing, etc. and occasionally when I stretch my legs at my desk. I also am active in Karate and surprisingly I don't seem to leak as much when I am going through the kicking motions. I do sweat a lot so maybe all the liquid is going through my pores and not my bladder. Not sure if it works that way, but whatever is happening it allows me to enjoy my training without having to worry about filling up a pad and leaking while I am standing and moving during class. I do take the precaution of using a fresh pad before class though. Again, I have seen a dramatic improvement since March and am still encouraged when I seem to be able to hold it now when I couldn't in the past. For example, it takes me approx 20 - 30 minutes to drive to work, which is normally when I do my Kegals, to and from work. When I would get out of my car, I could not hold the 30 minute build up until I got into the building to get to a restroom. Now I can hold most to all of it before I get to the restroom, with maybe a trickle along the way. I consider that a battle won but I still have battles to fight before I can declare the war a victory. Even though I had hoped that my progress would be much quicker than it has been, the progress I am making still keeps my spirits up.

    Encouraging and Well put
    kreinholt,

    Thanks for sharing that. My spirits also remain high, I keep moving forward. I do believe that in the near future I will finally make a decision for more treatment. I know my Doctor is not gong to rush anything though. Sometimes I think that they want to exhaust all options before any further surgery is attempted. I am hopeful, but it does seem on my end that I am not improving on the incontinence side, pretty much staying the same.

    On the Sex side there are times when I am good without Cialis and then times when Cialis is neeeded for a good erection.

    Lion1
  • JR1949
    JR1949 Member Posts: 230
    #14
    lion1 said:

    Encouraging and Well put
    kreinholt,

    Thanks for sharing that. My spirits also remain high, I keep moving forward. I do believe that in the near future I will finally make a decision for more treatment. I know my Doctor is not gong to rush anything though. Sometimes I think that they want to exhaust all options before any further surgery is attempted. I am hopeful, but it does seem on my end that I am not improving on the incontinence side, pretty much staying the same.

    On the Sex side there are times when I am good without Cialis and then times when Cialis is neeeded for a good erection.

    Lion1

    Incontinence after RP-even with Vesicare
    Hi guys,
    I forgot to mention that I am trying Vesicare with my urologist's approval. I think it is helping, but I wonder sometimes. Have any of you tried any of the bladder control drugs?
    What was your experience?

    I will see my urologist end of the month and plan to discuss plans for incontinence and erections.

    JrR1949

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