Sex and Incontinence

Hi BenEcho10,

Wondering how you are travelling with your incontinence now that a couple of months has passed.

Your post pretty much described my current incontinence condition, now 7 weeks after surgery. I am using 8 pads a day. I'm totally incontinent when walking, standing or moving unless I squeeze my pelvic muscles hard, which delays the flow temporarily. I can store some urine in my bladder when seated or lying down, and if I squeeze real hard before I get up I can get 80% of it into the toilet if not too far away. I go through 1-2 pads a night and urinate about 4 times a night. I keep stats on above and there has been no improvement at all in last 4 weeks.

It seems to me that I am well behind where I should be at this time, and that I should have seen some change over the last month. You'll see from my bio below that I have not had a straight forward recovery. I'm unsure if this has impacted my healing, and if so whether it will give me long term problems.

I do my kegels religiously. It would be nice to hear from others who have not improved as fast as they expected, or as fast as the norm, but who have eventually come good.

Berb.

Daveed, I know how you feel too !!!!!
Just hang in there.............

KW

Thanks for the responses Ben and GreenAcres.  While I wish it were different for all of us, at one level it is comforting to know that there are others out there in the same boat. 

Today is 6 weeks from the date of my catheter removal.  Prior to my surgery, my urologist said I could expect to be acceptably continent by this time.  Well, I'm far from that, but just in the last couple of days, I sense a difference.  For the first time I have actually felt a bladder urge during the day.  I have them on average 3-4 times a night, when I am awakened by an urge and pass around half a cup full at a time.  But Sunday was the first time I had one in the day.

It came immediately after running.  I've been a runner for many years, and I ran my first "fun run" post surgery.  During running, I've noticed that my kidneys produce significantly more urine than normal, and it just runs out rather than drips out.  I don't know why this happens but it is consistent if I run more than 30 minutes.  I filled my pad during the run, but then in the car driving home, I hadn't gone 15 minutes when I felt the urge to pee rather urgently, and did a good cupfull, the most I have done since surgery.  Strangely, with a fuller than normal bladder, I had less trouble holding it until I reached the toilet, than when there is less in the bladder.  It was so satisfying to do a semi-normal leak.  By the time I reached home in another 15 minutes, a second bladder urge was upon me, resulting in another cup full.  I sense that in addition to the fact that I was trapping the added volume produced by the kidneys during the run, the running action itself may have stimulated the nerves which trigger the urge mechanism in my bladder - interesting theory that I'll put to my urologist when I see him next.

I haven't had any more daytime urges, but since Sunday, there has been a modest decline in pad usage, down to only 4 in the last 24 hours.  I'm not prepared at this stage to accept that this may be the start of my road back to continence, but it is encouraging.

Thanks to all who have taken the time to post to this website.  I've found it extremely helpful.

John

Good Morning,

This is my first posting.  I'm  54 years old, 4 weeks out from a radical prostatectomy, and returning to work half-days (on my feet all day) in two days.

I'm still leaking but I have the same physician "Stan" (postings from last Spring) has

     - Dr. Satish Karnik in Austin, Texas.

  (Pre-Katrina, my Urology surgeons Dr. Satish Karnik &  Dr. Koushik Shaw were at Tulane.)

After the initial (complete) lack of control following catheter removal a week ago,

  I'm rapidly gaining control by using the

"walking around nude below the waist with a cup two hours a day - zero leakage tolerance"

      method Stan spoke of so articulately in this forum last year.

Time, aggressive Kegel exercises (including the abdomial muscles over the pubic area), the feedback from walking around with the cup, and a zero tolerance for sad thoughts -  are serving me well.

Some comments for those of you researching your surgery options.

My age of 54, biopsy, and Gleeson of 6 suggested I could wait. 

However, the post-surgery biopsy found the the cancer was touching the inside edge of the perineum. 

Waiting would have been very risky.

My pre-surgery research found that while many Doctors are qualified (I got a much appreciated second opinion/consultation from Dr. Matten at M.D. Anderson.), some Urologists are doing more than 3 radical prostatectomies per day - seemingly to "get their numbers up" for those of us looking for the most qualified surgeon.

My research suggested that while experience is important,

      those surgeons acquiring numbers in a flurry of "5-a-day-races" likely did not fully appreciate:

 the "Veil of Aphrodite," the integrity of the perineum, nor the new "parking place" for the bladder.

I haven't really figured out how to navigate this "thread" forum, but I've read quite a few entries.

Swimom, I want to thank you for your many kind and thoughtful encouragements.

Cedarchopper

Hi Ben,

My husband had an open surgery July of last year.  He wore 8-10 pads a day for the first few months.  Then down to 5-6 for about three more months.  We are eight months out from surgery and he is down to 1-3 pads a day.  We are among the slower ones in this area but things still seem to slowly be improving.  Especially when its only one pad a day!  As far as sex and incontinence,  at first, husband would try to empty bladder out as much as possible.  Still, it was sometimes a little wet but honestly, it didn't bother me, it doesn't hurt anything and a shower afterwards takes care of it.  I thought it was more important for him, his ego and well being to know he could still perform.  I think it helps with the healing inside and out, physically and mentally.  Currently, he can pretty well keep it dry during sex but not always.  For myself, I don't care, the leakeage, if any is minimal and its not that big of a deal to me.   

Take care,

Hi Cedarchopper

Re your comment on "aggressive Kegel exercises (including the abdomial muscles over the pubic area)". By aggressive, do you mean high intensity or high volume or both? Do you push it despite pain in the perineum? There seems to be so much confusion about this, I don't know what to believe any more. Some authorities (most) say not to tense buttock or abdominal muscles; yet Dr Walsh's book says to squeeze the buttock muscles, and it appears that your doctor advocates abdominal tensing. I'd be keen to read exactly what program your doctor advocates for Kegels, because what I'm doing is not working - 10 weeks from surgery and 6-7 pads a day.

Also, with your cup method, do you break this into say 4 x 30 minute sessions?

Regards
Berb.

Hey Life,

We all get a little p______d off now and then with this disease. Don't ever feel bad about venting it here on the forum because that is what we are here for. PCa debilitates, humiliates and frustrates us no end. But we have each other and the hope of full recovery - in time. Take one day at a time and look for the little improvements that are bound to come. We crawl, then we take baby steps and eventually we walk again...

Jim

Been trying Cedarchopper's exercises.  Hope they bring about some improvement soon. 

Went back to the urologist a couple of days ago.  PSA non-detectable, which is what I wanted to hear.  Urine test showed no sign of the Citrobacter infection I had for around 6 weeks, so maybe the antibiotics have cleared it up.

My Doc acknowledged that my recovery of continence is slower than normal (I've seen no discernable improvement 10 weeks after surgery).  He assures me that it will come good.  He says that there is a tendency for those who are slow to recover continence to be of lean build.  I am a marathon runner and have a build to match.  He says that I have thin pelvic floor muscles - fit but thin.  A heaver person carrying more weight will have bulkier pelvic floor muscles he says, and the bulkier muscle helps the sphincter do its job more effectively.  Anyone heard of this before?

Berb

Ben,
I hope you are doing well. I know you want to be separated at times from these discussions but I invite you to my thread and poll on stage III cancer treatments. I know you have wavered on what additional treatments to receive and I am curious what you decided or would decide. Please when you can, check out this thread as I am going to make a decision on treatment next week and will absolutly consider your thoughts. I hope that God is answering our prayers on the difficulties you have been experiencing with the post op side affects. You are a fine contributer to this site, but I fully understand if you choose to not over participate. If your continance issues are still preverant, hopefully you are seeking a surgical aid to getting your control back.  I don't think I could stay positive with excessive side affects but I may be heading that way when I choose a treatment for our contraversial stage.

Tony

Post Edited (TC-LasVegas) : 3/29/2007 11:19:31 PM (GMT-6)

Hi Ben and others on this thread.

Sorry to come so late to the discussion. Hope you are still around. Reading this thread has been valuable. I had robotic laparoscopic prosate surgery June 22. Three weeks later, I am plagued with diaper rash and other soreness. Just call me Red Roughensore.

Diaper irritation was an element of this thread early on, so I've got to assume and hope, Ben, that you beat your problems a while ago. Is that so, and if so, how?

I am 61. My continence has been marginal most of my life. Urgency is the issue. I wet the bed and wet my pants until I was 10 or so. By the time I got the TUNA procedure, 4 years ago, I knew every restroom and hidden wooded area on every road in the 30 miles between my house and my work near Boston.

So I was concerned that I might have worse-than-usual continence problems after the surgery. And I was more concerned that I'd lose my ability to have an erection.

Since I settled down, my erections have been nice and reliable, because I've been married for 28 years to a wonderful woman who enjoys sex and likes love even more.

I didn't want to lose old reliable. But I told myself that if it came to it I'd take viagra, and if it came to it I'd spend the money for a pop-up implant. And then if it still came to it, well, I'd always been a *** anyway. [Ooh, the software censored the word that describes women who love women.] I hope this doesn't push the edge of the conversation too far.

So I went to Dr. Jim Hu at Brigham and Womens in Boston. He interned in Los Angeles where they helped pioneer the robotic approach. He's done almost 500 of them, compared to my local urologist, who had done 100. Brigham and Womens is a great hospital to be a patient in. My wife had surgery there last year and we loved the helpful and friendly attitude everyone had, at all levels in the hospital.

I had Gleason 6 scores in the biopsies before and after the surgery. Fortunately, the cancer was not near the edges, where the nerves are. Just before anesthesia, Dr. Hu came over and asked if I had any concerns. "Preserve the nerves!" I said. After the surgery he told my wife, "The last thing he said was 'Spare the nerves.' So I took extra time."

Boy am I happy he did. Dr. Hu said it might take two years before I'd know if I was going to be potent again. But the first night I got home, I had a dream that my wife was about to tender me oral attention. I felt a swelling, which quickly bumped into the catheter, and that was the end of that. But I woke up ecstatic that there was life down there. Wife too.

The catheter was hauled out after 6 days, thank goodness. It was a quick recovery, with no severe pain from the cuts. The night after they took the catheter out, my wife and I had sex, with a little penetration at the end. I was like 80 percent erect or a little more. I was delighted. A few days later it was 95 percent. I think that's pretty lucky, for three weeks out, or even a year or two out. Yes, it starts a little slower, and nods out a little earlier, but it comes back, and it's coming back. The desire and pleasure are still there. Spermless orgasm is strange, but I'll take it.
So I was feeling rather euphoric, and then the wetness issue started not stopping. I'm wearing ultra-thin CVS diapers, which are pretty good, except that you've got to take off everything to change them. I work at home two days a week and walk around in long T-shirts and nothing else, just to keep dry, as I see others on this thread do.

I have some questions: When people here talk about pads, am I missing something? Do pads work as well as diapers and are they easier to change? That would be great. What brand? What is this stairs and cup exercise people keep talking about?

I have diaper rash where the leg meets the trunk, and general degradation of the skin elsewhere. I don't know if some of the latter is herpes -- I caught it around 1970 and I rarely get it anymore -- except when run down -- but it could be. Or it could be crotch rot, whatever that is. Or all of the above. It's red and abraded, and it stings.

Should I go to my local urologist for diaper issues? He says he will take me back. But I feel a little like a cad, since surgery pays so much better than diapery.

Any thoughts are appreciated.

Thank you, lifegyd! Pads R Us from now on.

Hi ~ Gator,   Welcome!   Any chance you might start a personal thread??   We’d like to get to know you!!! and your posting above has good information for Newbies too!!!   It’s a gift we would greatly appreciate.   Every journey is important and it truly can help others.  A nice signature line to let us know where you’ve been and where you are today ~ is extremely helpful.   It’s never too late to join HealingWell….   we’re really glad you found us!!      Here is a thread that will help you in finding the right pad!!!   Buddy switched from Depends to Serenity and they were much better.   Not as bulky!!     Again ~ Welcome and hope to see you soon on your very own thread… In New Friendship ~ Lee & Buddy   (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there)   These pads are hot!    Thread started by dawgfan Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)  

Thanks Lee and Buddy. I will start my own thread. But I am preoccupied right now with rash questions, and I don't expect to always be preoccupied with rash questions, so I'm not sure how this thread will tell my whole story. The way I found this board was by searching Google for incontinence and sexuality. That took me right to a good thread.