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Incontenece - expectations versus reality

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Posted 2/14/2012 11:26 PM (GMT 0)
Let's get back on this topic as it's probably one of the most prevalent issues after surgery.  I'm at 9 weeks post Divinci and still using 1 to 3 pads a day. None at night but I do take a small towel to stuff between my legs to catch any drips. I went from 6 - 8 times a night to 2 - 3 getting to the toilet to pee. I still drip during the day and do the keigles at every opportunity.  I'm very frustrated that I still must use pads but understand it's all a natural progression after surgery.  All are unique in how we respond and recover.  Let's  all stick together and share experiences and techniques.  It helps so much. 
Posted 2/22/2012 1:17 PM (GMT 0)
Dear Wet and Weary

I have slept with a bath towel between me and the sheet since my op. You might find that more comfy.

When I was at the constant dripping stage I also had a bath towel on hte floor beside the bed to protect the carpet. Thankfully those days are past

Posted 2/22/2012 2:01 PM (GMT 0)
Herman,

Sounds like your recovery is on par with the average. It's been almost a year since my robotic surgery and I still have stress incontinence and night time leakage. The doctor says I drink too much at night before bed. I am getting over a cold at present. OMG everytime I cough squirt squirt squirt. It's so disgusting and aggravating. Had to return to the large pad until the cold is over. ED is another issue that has seen very little improvement.

"Radical Prostectomy is not for P U S S Y 's"
Posted 2/22/2012 3:34 PM (GMT 0)
Herman: thanks for the post and the tips on what helped you. I'm glad to see you are doing better, and I just might try those intense kegels myself. While in the decision stage of this journey I have to admit that I was more concerned with the ED issue. Oh, I knew the incontinence issue was out there but I was sure I was going to do well with this one. Wrong, it has been hit and miss since I've started this journey. One day on my morning walk I will pissed 390ml upon return. The next day all 390ml and more had leaked into my depend. I've found the incontinence issue to be more frustrating than the ED issue. Before going out, I find myself questioning what the bathroom facilities will be like where I'm going. If it is a restaurant, will they have seating if we have to wait for a table. Incontinence is with you 7/24. ED is with you a couple of times per week when you would like to have sex.

With my own personal incontinence issue, I can honestly say that I’m doing better but not good. I’m dry at night but wear a depend just in case because I had one night where I didn’t get up when I awoke at midnight and I woke up two hours later with some wet underwear. Luckily nothing hit the sheets so I was able to go right back to bed. I keep the depend on until I return from my morning walk where it is almost always drenched. Yesterday I decided to push myself and changed from depends to pads during the day, and I used five pads. That is a great improvement for me. Pads can be changed without having to take my shoes and pants off. Plus, it has given me a better outlook on life not having to wear diapers. Over all I’m better and I’m sure I will see improvement. What I’ve learned is that I need to look at how much I’ve improved over the last month and not even look for improvement on a weekly time frame. Maybe I PC will teach me patients.
Posted 2/22/2012 8:44 PM (GMT 0)
Herman
I was almost without any continence at all for a quite few weeks. I found a convene very useful for trips away. Incontinence is certainly worse than ED.
A drug called Vesicare may help -check with your Doc
I am afraid ED is likely to be long term but after a year or 2 viagra may help
Daily Low dose Cialis can help but it gave me the runs!
Overall I think it is best ot get practised with non penetrative sex, its almost as good if not as good. But not at first.
Posted 2/22/2012 10:09 PM (GMT 0)
Week 10 report - I still use one to two pads a day but now can walk and hold most of the time.  Seems there's no logic in when I can hold and when I cannot.  The usual mental frustrations but I keep at it and the stories of others on this forum is comforting.  Your collective experiences help me greatly. At night I use a small towel and hold it quite nicely.  Now to the john only 2 -3 times vs the 6 or more in the first few weeks.  Cialis twice a week and it's helping achieve a semi-erection.  Did an experiment in the shower last night and it worked well.  As good or better than pre-op.  (Navy submarine training)

I didn't want to join this club but since I'm here I'm proud to read about the challenges and the group compassion and support.

Posted 3/5/2012 7:24 PM (GMT 0)
Hi Guys

Like most of you out there, I didn't really appreciate just how incontinent I could become after the prostatectomy. My catheter wa removed 5 weeks ago and leakage has been very unpredictable. At night I'm mostly dry and the same is true while I'm sitting. Once I get up it's Niagra time ! I seem to be losing in the region of about 200 mls a day, but today It's been way over 400 ! And I haven't really done anything different to yesterday in terms of what I've drun and types of activity.
Any of you guys out there have a kind of seesaw experience while getting back your continence? I must admit, today has really knocked me for 6 and would be very grateful for any help and encouragement you can give would really help.

Best wishes

Tony
Posted 3/5/2012 8:01 PM (GMT 0)
Good responses on the forum and I appreciate all the encouragement.  I'm a little over 4 months post op and the incontenence is almost gone.  I don't have to wear a pad around the house but I do wear one if I'm going out for the evening, but just for reassurance. This weekend I came back home after a full evening out and was totally dry.  Not even one drop in the pad.   I do leak a small amount sometimes while bending or lifting, but even that is getting better.  The last time I measured leakage, I was leaking less than 20ml on a very active day.  Some days with moderate activity I have zero leakage.   So, patience and staying positive helped a lot.  I'm still doing Keggles and hope to see totally zero leakage at some point. 

ED is another thing I'm trying to be patient with.  But I've taken a proactive approach in that respect.  I have an appointment with an ED Urologist March 14th.  I was informed at my last visit at Moffitt that if my penis errection tissue doesn't get the proper blood flow to heal properly, irreversible ED could happen.  I was told not to wait much longer to see an errection harder than 60% that stays awhile.  She recommended I see a specialist that is familiar with post radical prostatectomy, ED and penile rehab.  Seeking a urologist that isn't shy about prescribing Injections is the penile rehab she was refering to.  So I'm going to do whatever it takes to fix it.  Not looking forward to that first injection.

I'll update you on the outcome.

take care, hj

Posted 3/6/2012 2:31 PM (GMT 0)
Good luck to all.

My personal experience is that at about 15 weeks I really started to turn the corner.  I'm 100% dry at night, waking up to pee once a night.  Usally about 3-4 AM, which is really annoying, cause half the time I cant fall back to sleep until alarm rings at 5.  (but thats a different story altogether).

I'm nearly dry during the day, only at one pad per day (and that's usually nearly dry)  when at home I use 'womens' panty liners, instead of bulky pads.  Still too scared to go that way at work though. 

Leakage comes during stress periods,  For some reason I find 'yawns' the worst, I suppose it's because I relax everything.  Only occasional drips from High stress activities.

Also seem to have made progress on the ED front at the same time (related?). 

Posted 3/6/2012 4:05 PM (GMT 0)
I'm glad to see the posts where some of you have experienced an inconsistent continence recovery. My recovery is all over the place. The one big variable that is sometimes hard to quantify is my activity level. I use my morning walk as my main activity to measure if I'm doing better or worse. Today was horrible after a week of doing better. I've learned that it is just going to be that way.
Good luck to all of you
Posted 3/8/2012 11:31 PM (GMT 0)
Herman J: glad to see your extensive pelvic floor exercise (pfe) has been helping you. I was impressed by your focus and drive at doing pfe's so intensely.

One note of caution that may apply to others. I applied to me. I started to do pfe's with a vengeance. I really pulled that muscle hard. Within days I started to leak more than prior to doing intense pfe's. It took about 4 weeks to return to where I was before I started intense exercises. I measure pads so it was easy to correlate the leak increase with the aggressive pfe's I started.

I leak about 10 cc ( 1/3 of an ounce) in 24 hours. Daytime leakage during a typical workday is 6 cc again. With the intense pfe's it rose to 8 or 9 cc during my 13 hour work/commute day.
Just a word of caution. I still do pfe's but have eased back no pulling so hard. Hope you and others are making steady progress. I am but it seems to be lowering at .5 cc per month, with intervals having no progress.

Keep hope alive.
Mike S.
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