ED and continence

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Hawkflyer
New Member


Date Joined Jun 2008
Total Posts : 9
   Posted 6/27/2008 10:37 AM (GMT -6)   

Considering that I am only 3 weeks out of a radical prostectomy with robotic surgery (the good old daVinci Machine) I am feeling fairly good in the healing department.  My doctor informed me that at 2 weeks out of surgery I could start taking my Viagra and start working on the ED issue. He informed me that I could even have sex if I was feeling up to it. What I found on the first day of taking Viagra was that I had about a 30 percent erection. I was all excited and thinking that I was on the right path to a normal sex life. Sadly, this has been my only success and nothing has happened since even while taking the Viagra. Now, I am not so sure. My wife thinks that it could also be in my head and that I am too hard on myself. I was a very sexually active guy prior to all this mess and all I had to do was think sexy and I was up and ready.

 

I have noticed a strange sensation down there, like being tickled from the inside of my urethra. It’s not unpleasant. There have been other times that I get an aching sensation from deep inside. I chock that up to still healing and am not very worried about it. I have also noticed that I am not getting a very good stream when I urinate. I plan to discuss this with my doctor when I see him next. This surprises me after that catheter was in me for a week. It comes out thin and not as a single stream. Kind of a shower spray that goes everywhere. It has forced me to sit and pee to prevent a huge mess. I have also found that I have much better continence in the morning with a greater chance of leaking as the day grows late. Greater chance…what am I saying, I leak. I’m going through 2 or 3 pads a day. I was hoping for better.

 

What I am truly surprised about is that I can still have a fairly good orgasm without an erection and without the seamen popping. I never experienced this before, as I never had an ED issue prior to surgery. I have had several orgasms from self-stimulation. I’m no doctor but I believe that an orgasm is the ultimate Kegels exercise. Man, talk about the pelvic floor tightening up. I almost cramp down there from the muscles contracting as result of this activity. Therefore, I think I will lay off this activity until I am more completely healed in there. With that said is there a way that you other guys prevent from getting excited. For example, I watch a movie with my wife and some hot scene is going on and I still feel the desire inside. I just can’t do anything about it.

 

This whole thing does get frustrating sometimes. I know I will get through it but I get tired of peeing on myself and not being able to have intimate relations with my wife the way we used to. I worry that I’ll be the statistic that doesn’t get my continence or penile function back. I know the doctors told me about the post surgery conditions, I just didn’t comprehend the effects it would have on my stress levels. Life sucks sometimes but I know that what doesn’t kill us will make us stronger.
 
*******************************************************************************************
 

47 Years Young.

PSA 5.4 - Discovered during Annual Physical with Family Practice Doctor.

First time I ever had a PSA drawn. I believe that my Doctor saved my life.

DRE negative.

3 of 10 cores positive, in left lobe only.

Pre Op Gleason score 4 + 3 = 7.

Biopsy pre-op - rated T2a.

Da Vinci Robotic RP surgery on June 4, 2008 – Both side of the nerves saved.

Biopsy post-op - rated T2c – both sides had cancer as noted in pathology.

Post-Op Gleason score 4 + 3 = 7.

All margins clear - no cancer outside prostate as noted in pathology.

Post-Op PSA not yet completed.

DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 6/27/2008 10:45 AM (GMT -6)   
Slow down and take a few deep breaths....
 
You are TWO weeks post-catheter and only using 2 or 3 pads a day.  That is excellent.  I was using about 8 to 10 a day at that juncture.
 
As for ED, have patience there, as well.  Sometimes it takes up to two years to return and yes, sometimes it never returns.  If the ED continues, I suggest you look into a medically approved vacuum pump for therapy and if a few months go by with continued ED problems, you might consider injections for both therapy and intercourse.
 
Good luck to you.
Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


Hawkflyer
New Member


Date Joined Jun 2008
Total Posts : 9
   Posted 6/27/2008 10:55 AM (GMT -6)   
Is there any difference from a medically approved vacuum pump and a cheaper pump that you can purchase from an adult store? I haven’t looked weather my insurance will cover the cost of the medically approved pump and I hear that they are expensive. I will opt for the medically approved unit even if it means a larger out of pocket expense. Just curious.

47 Years Young.

PSA 5.4 - Discovered during Annual Physical with Family Practice Doctor.

First time I ever had a PSA drawn. I believe that my Doctor saved my life.

DRE negative.

3 of 10 cores positive, in left lobe only.

Pre Op Gleason score 4 + 3 = 7.

Biopsy pre-op - rated T2a.

Da Vinci Robotic RP surgery on June 4, 2008 – Both side of the nerves saved.

Biopsy post-op - rated T2c – both sides had cancer as noted in pathology.

Post-Op Gleason score 4 + 3 = 7.

All margins clear - no cancer outside prostate as noted in pathology.

Post-Op PSA not yet completed.


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 6/27/2008 11:10 AM (GMT -6)   

I have never looked at the ones in an adult store, so I am not sure.

The medically approved ones have a safety valve to use when you pump too much too soon.  Not sure if all pumps have this.


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


VaFan
Regular Member


Date Joined Mar 2008
Total Posts : 203
   Posted 6/27/2008 2:56 PM (GMT -6)   
Hawkflyer,
My husband and I are going thru similar situation as most on here are and I know how frustrating and lost you feel. But with an understanding wife and finding intimate ways to be together other than the "norm" will get you thru this. Kents surgery was April 10th and right after he had what seemed to be very normal erections. Then back to nothing. Sure, its not easy because we had a very active sex life too but its all part of the process with this horrible monster. As with the incontinence, he was convinced he would never pee like before again..going everywhere, using pads, etc. Now he is pad free. Just happened one day.
You have to give yourself time. We have been told this so many times but once you start feeling better, you think all should be ok again. With this, its just not that way. Read all you can. You will learn so much and of course always ask whatever you need from these wonderful people on this forum. The have been such good friends to us as they will to you too. No question is too small.
Cindy and Kent
Age 51 Kent Cindy 49
January 08 PSA 5.2 round of antibiotics went to 4.3
February 08 another round of antibiotics went to 4.2
March 17,08 had biopsy, 2 days later told cancer was on
one entire side of prostate.
Gleason 3+3
Doctor thinks its best to get the whole prostate with Perineal  Prostatectomy.
Surgery scheduled for this Thursday April 10th. Only took 1 1/2 hours. In recovery 1 hour.  Both nerves were spared.
Home 4-11. Cath out 4-22. Incision looks completly healed on the outside by 4-25.  Incontinence "a thing of the past" as of 5-28
lst PSA 0.04 June 3. YAY!!!
viagra up to 100 a day and feeling some change. Keep our fingers crossed.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/27/2008 3:56 PM (GMT -6)   
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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/27/2008 4:31 PM (GMT -6)   

Hawkflyer, Welcome to the forum.  Some short answers for now....

RE your strange sensations down there:   I have had what I call 'knitting pains' for the full 8 months since surgery.  Not all the time, but it feels like something is just inside, pinching me.  I am hoping that's nerves regenerating.  To have a variety of sensations 3 weeks after surgery isn't unusual and even to be expected.  Things are adjusting, settling, healing and such, so it will take a while to get it all sorted out.  Give it a couple months to settle down.

The urine stream:  It's still soon after removal of catheter and it takes a while for the swelling to go down internally, from the urether all the way to the bladder.  If it doesn't improve shortly, or if you show any sign of infection or stoppage, see you doctor and get his opinion...In any case discuss it with him when you get back for a checkup.

Orgasm without erection:  That's something else, isn't it.   Just goes to show you ain't dead yet...lol  Yes , that's a fact of life after surgery, you can have dry orgasms with a flaccid penis.  No harm from it, and it's even good therepy for regenerating nerve healing, so don't worry about it.  If it doesn't hurt, then it should be ok.  If you wish, you can wait a couple weeks and try again.  If your worry about getting excited is about damaging something, don't worry about it.  If its the mental part of frustration of being excited and no erection, then there's a variety of ways left to keep intimacy and satisfaction for you and your wife going.  There lots of other ways to achieve it, without the erection.  The less you worry about it, the greater the possibility of faster recovery. 

It's a long and emotional journey back for most of us guys, so join the club, we're all in it together now.  tongue


James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
5/7/08 ED- Viagra, pump, no response- Trimix .075ml continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0


Hawkflyer
New Member


Date Joined Jun 2008
Total Posts : 9
   Posted 6/27/2008 5:42 PM (GMT -6)   
You guys are all great. You make me feel much better with a few typed words. I wish I had found you earlier. Like when I got that first PSA. With that said, I will be around and I will be monitoring and posting on this forum on a regular basis as I proceed through this healing and growing process. As so many of us on this forum has had the same experiences is feels great to openly discuss this with all of you. This is not something I could do with just anybody. I would be very embarrassed discussing these issues with even some family members. We all have a special connection that in some way makes us all a family. I just want to say thank you…to all of you. This is a process that gets very frustrating and downright aggravating at times. It just isn’t fair but it is very real.

47 Years Young.

PSA 5.4 - Discovered during Annual Physical with Family Practice Doctor.

First time I ever had a PSA drawn. I believe that my Doctor saved my life.

DRE negative.

3 of 10 cores positive, in left lobe only.

Pre Op Gleason score 4 + 3 = 7.

Biopsy pre-op - rated T2a.

Da Vinci Robotic RP surgery on June 4, 2008 – Both side of the nerves saved.

Biopsy post-op - rated T2c – both sides had cancer as noted in pathology.

Post-Op Gleason score 4 + 3 = 7.

All margins clear - no cancer outside prostate as noted in pathology.

Post-Op PSA not yet completed.


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 6/28/2008 12:42 AM (GMT -6)   

It is still early in the game as far as erections go. With nerve sparing and you being young you have a good chance of gaining your erections. I was fortunate as mine came back pretty good with no meds, with Lavitra they are back as good as ever. (See my signature below.) Remember as good as the orgasms are flacid, they are 10 times better with a full erection. Having the desire without the erection can be torture. I have not had the tingle sensation you mentioned. The continence will get better too. I know you have heard it before but do give yourself time to heal.

 

 

 


Age 59, psa 4.7 in Jan. 08. Biopsy: one positive sample out of 13. 1% of one sample cancer. Prostate removed on 3/5/08. Nerves spared. Cath out 12 days later. Continence good. No pads needed since 6/10/08. First PSA: Less than 0.1 on 6/17/08. First erection five days post op and have been improving well since then. Full erection now possible but not as easy to maintain as pre op. As of 6/18/08 with Lavitra a full erection easily maintained is now possible. I am pleased with the progress so far. Married to same wonderful woman for 39 years.
She is still beautiful and sexy as ever. A great help in my recovery !!


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 6/28/2008 7:17 PM (GMT -6)   
you do need to take your time on the ED front, your nerves were pulled and touched and take a long time to heal , seems like you will regain potency as you had already some sensations, i am a year post op and still not at 100% BUT HOPE WELL ON MY WAY AS I CAN HAVE AN INTERCOURSE with meds , and i consider myself lucky to have no incontinence issues, 0 psa, and usable erections after a year, so you are very very early in the process, take your time and practice alot ..

Good Luck and keep posting

GB :-) :-)
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 6/28/2008 8:01 PM (GMT -6)   
BTW -
the cheap pumps from the sex stores work just fine. Make sure you get the kind that has a cuff around your penis - not the kind that create the vacuum against the skin of your abdomen. All the pumps have the quick release valve and, with some work, you will discover how to get the most out of them. They don't feel at all erotic, so don't get your hopes up!
Paul
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
10/07 PSA 5.06   (Biopsy 11/07  1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC  www.roboticoncology.com
Saved both nerve bundles.
Path Report:  Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at six weeks
Pad free on March 14 - (10 weeks.)
ED - Take 100mg viagra every night.
Totally usable erections at 10 weeks.
 
 


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 6/30/2008 11:00 PM (GMT -6)   
Dear Hawk,

My guy was diagnosed at age 51, and you will see by our signature that he had the robotic assisted, nerve sparing surgery. I just want to let you know that the sex life is now better than we started to think it would ever be, here a year and a half after surgery. Up until six months ago, B was thinking that he was going to need injections to get the kind of erections he was used to, and he was ready to go that route. But, just about 13 months post surgery...voila...Viagra is all he needs for us to get-it-on just like old times. Are we joyful? You bet!!!!!

You know, a lot of what I read indicated that 18 months, or more, after surgery would have to pass in order to achieve the kind of recovery one wants in the sexual healing. But knowing that did not prevent the fear, depression, and frustration. I hope you and your wife can have faith that time is on your side here, rather than not.

Best wishes,

Becky

Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery, then intermittent drips 4 wks out

Full erection, 12th day after surgery

2 mo’s post-op, some ED after penetration

3 month PSA 0.03

6 month PSA non-existent

1 year   PSA  non-existent

Erectile function--up and running!

 


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 7/1/2008 9:06 PM (GMT -6)   
Becky, Congrats !!!
Ain't it great !! Mine came back in less than four months.
My wife and I are enjoying each other again also.
Best of luck to you both.
Age 59, psa 4.7 in Jan. 08. Biopsy: one positive sample out of 13. 1% of one sample cancer. Prostate removed on 3/5/08. Nerves spared. Cath out 12 days later. Continence good. No pads needed since 6/10/08. First PSA: Less than 0.1 on 6/17/08. First erection five days post op and have been improving well since then. Full erection now possible but not as easy to maintain as pre op. As of 6/18/08 with Lavitra a full erection easily maintained is now possible. I am pleased with the progress so far. Married to same wonderful woman for 39 years.
She is still beautiful and sexy as ever. A great help in my recovery !!


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 203
   Posted 7/2/2008 7:43 AM (GMT -6)   
B&B's World said...
Dear Hawk,

My guy was diagnosed at age 51, and you will see by our signature that he had the robotic assisted, nerve sparing surgery. I just want to let you know that the sex life is now better than we started to think it would ever be, here a year and a half after surgery. Up until six months ago, B was thinking that he was going to need injections to get the kind of erections he was used to, and he was ready to go that route. But, just about 13 months post surgery...voila...Viagra is all he needs for us to get-it-on just like old times. Are we joyful? You bet!!!!!

You know, a lot of what I read indicated that 18 months, or more, after surgery would have to pass in order to achieve the kind of recovery one wants in the sexual healing. But knowing that did not prevent the fear, depression, and frustration. I hope you and your wife can have faith that time is on your side here, rather than not.

Best wishes,

Becky

Becky this is  great news !!!....
...  and  alot for other members like myself to look forward to ...i am only   over a year post open RR   and am fvery happy  with my nerve sparing procedure , no incontinence issues at all from the get go , PSA   at one year mark improved to 0.0 , and ed  progressing on scheduale   now at 80% without any help and almost at 95% with Generic Viagra and usable  erection.....  i hope at my 18 months  Anniverssary i wil be back to Pre surgery condition!!!   mean while i try practicing ALOT!!
 
Keep us posted ...
Good Luck !!
GB :-)
have FUN 

April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!

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