5 months after RP

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devlin
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/7/2008 1:03 PM (GMT -6)   
Healthy 46 year old, diagnosed in april 2008, total RP surgery july 7th 2008. 1st psa after surgery 0.3. Doing my kegals religiously, continence getting better. My main concern now is lack of any type of erection. I have extremely low cholesteral levels, rarely drink, but I smoke a pack a day. Had healthy erections prior to surgery. 1 month after surgery I was getting 50-60% erections a few times a day (mostly when I got angry). Erection frequency and strength has diminished since then. Using the pump (how often should I use it?). Viagra does absolutely nothing. Doctor insists nerves were spared. Wife and I do a lot of petting, had orgasms in August and September, but starting in October it started taking longer and longer to reach orgasm. Last time we tried it took 1-1/2 hours to reach orgasm. I now only get 20-30% erection and it takes far to long to reach orgasm, its so frustrating it hardly seems worth it. All my surgeon says is it should get better, but if it doesn't he can install implant. Well its not getting better, it's getting worse, and it's frigging embarrassing and frustrating. Penis seems shorter, and feels like it is dying. I know I should be happy to be alive, but why? I feel my manhood has been robbed from me. I have lost interest in just about everything I used to enjoy. I used to love tooling on my 70 chevelle or playing drums in my rock band, but it all seems so trivial now. Have not been able to reach orgasm since Halloween, its just takes to long, over 1-1/2 hours I/we just give up. Life just seems so empty now.

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 12/7/2008 4:38 PM (GMT -6)   
Hey Devin,

Stay with it!!! You are very early in recovery and can't expect instant results. Read some of our experiences with fixing ED. There are lots of things you can do. Cancer recovery rerquires lots of patience...

Jim
Age 74. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 7/17/08 0.00. 
Next PSA test on 1/28/09
Lung cancer dxed on 5/16/08.  Surgery on 6/25/08  T1N1M0 - Stage IIA  Finished 4 cycles of chemo on 11/7/08.
CT scan on 12/2/08 - in remission!!!
Next scan on 2/26/09.
"Patience is essential, attitude is everything."


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/7/2008 5:33 PM (GMT -6)   
It is a lot harder to orgasm without a proper erection. I went through a phase where I didn't always orgasm, but that seems to have passed.

No reason why you shouldn't use the pump once or twice a day -- not necessarily with the constriction bands. That should help with the length problem. Experiment with the constriction bands, and if you feel like it, musterbation is OK too -- consider it training for real sex.

Also consider injections -- they work well for many, and as with the pump, there is a learning curve. It is important not to give up after a few failures -- which you will have.

You may well have natural erections return, but it could take as long as 2 years, even more. Until that time, you need to keep exercising the equipment. The pump and/or injections allow a lot of fun while doing it.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/7/2008 6:05 PM (GMT -6)   
How unhappy you sound Devlin,
 
If I've ever heard them, those are words of a frustrated and depressed man. Time to find a healthy outlet to express all that pent up frustration.
 
I'm not necessarily an advocate of turning to meds right away (orgasmic dysfunction is often a side effect) but, that may also be an option at some point. Shots for erectile dysfunction are a possibility. Tried them yet? It seems that if you could get function, you would feel so much better and start turning a corner. Good Luck to you.
 
Swim
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/7/2008 7:21 PM (GMT -6)   
Dear Devlin, You are the man you have always been....just wait a little while longer. It takes time, and it takes patience. Get back to your drums....They will give you the beat back to your life. Try what Swim suggested the shot....It works for many., You have a loving wife that understands....You are young and strong and you will be back again. I know it..

Diane
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 12/7/2008 11:08 PM (GMT -6)   
I know your frustration. All I can say is hang in there. I am in the same crowd.
 
I had surgery in July 2008.
 
I had no real problems with erections after surgery. Then in October I started finding it more difficult. At that time I got an infection in the surgery site area. I have been on antibiotics with a drain for a month now. Erections are basically non existent.
 
I go to my doc on Thursday. Hopefully he can shed some light on this... And hopefully the drain will come out too. I am tired of the tubes and collection ball.
 
Anyone have any ideas on the shorter penis like devlin mentions? When I get an erection, it is the same size as before surgery. But when flaccid, it is really really different. So much that I have a difficult time sitting on the toilet and having urine go in the toilet bowl. In 25 years of marriage, I never had urine running down the front of the toilet. Now it had happened a lot. I have not had a chance to ask my regular doc but will on Thursday. The assistant kind of passed it off as not knowing.
 
I too am having some "down" times and wonder if I need some mood drugs. I really don't want them as I had to use them years ago and was glad when I got past that.

Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 12/8/2008 8:08 AM (GMT -6)   
hang in there Devlin! I can't say I know how you feel since I am a wife, but do understand the frustration of dealing with the lack of erections, trying to help Jeff with orgasms, etc. it does get better with time. there are a multitude of things to do - use the pump twice a day, try other ED drugs, use injections, take anti-depressants (which unfortunately may cause ED), go back to what you love to do (besides sex). lots of guys and gals here have been through what you and your wife are going through, so keep posting and keep reading. take care, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!
3/08 - 18 mo PSA <0.1
switched to Levitra - works much better than Viagra & Cialis - fewer side affects
summer of 2008 - have had a few erections with no drugs! yeah!!
8/08 - 2 yr PSA <0.1


devlin
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/8/2008 5:06 PM (GMT -6)   
Thank you all, you have been more supportive and have given me more info in 1 day than my dr. has in 5 months. So glad I found this site.

Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 12/8/2008 9:29 PM (GMT -6)   

devlin-I'm not sure if this will help, but I found that the harder I tried to get an erection, the less success I had.

I had better results during the first year post surgery when I was able to not think about the status of my erection. 

Easier said than done, but, for what it's worth, if you haven't already, just pursue things with the attitude that an erection doesn't matter.

Dave


Age:54
PSA 5/22/06: 5.6
Divinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


apacker1950
Regular Member


Date Joined Nov 2008
Total Posts : 122
   Posted 12/8/2008 10:57 PM (GMT -6)   
Devlen,
You sound like me at 5 months. That's when I started using Trimix. It took a few tries to get the dosage right but it has been working great for my wife and me for 2 1/2 yrs now. My ED seems to be here for the duration but as long as I have Trimix I am a happy man. If your Dr. won't help you with injections, find one that will. Hang in there. It does get better. Happy Holidays one and all!
Age 54 at Dx.   Currently 58
Jly 05- PSA 8.1
Sept 05- PSA 10.7
Sept 05- Biopsy revealed 9 of 12 cancerous, Gleason 3+3=6, T2 stage
Bone scan and cat scan showed hot spot on hip bone.
Oct 05- Surgery for bone biopsy.  Pathology showed benign growth, no cancer in bones. Who ever thought I would be happy to only have PCa?
Nov 05- PSA 15.4
Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, SLC, UT by Dr. Robert Stevenson. 
Home after 3 days.Cath out at 2 wks.
Incontinence gradually improved for about 3 months to 100% continence.
ED- Tried the big 3 pills with no results
Feb 06- PSA undetectable, Started VED which worked but caused discomfort with constriction rings.
May 06- PSA undetectable, Dr. gave me an Rx for Trimx injections. They work great.  Still use VED on off days without constriction for therapy.
Aug 06- PSA undetectable 
Nov 06, May 07, Nov 07, May 08, Nov 08 - PSA undetectable
ED appears to be perminant but doing great with Trimix.


nemo57
Regular Member


Date Joined May 2008
Total Posts : 43
   Posted 12/9/2008 9:15 AM (GMT -6)   
Devlin, I find the more you stress over things the harder it is preform. Get back to the things you like to do. I love to kayak and fish and getting out on the water relaxes me. I know things will be different when it comes to sex but I am glad that the cancer has been removed and I will be around to be with my wife and kids. Good luck and Happy Holidays
New Jersey
Age 51
Psa 0.9
Biospy 1 core positive
Gleason 3+3-6
Surgery date Aug.11, 2008 at Monmouth Medicial Center
Robotic Surgery By Dr. Lanteri And Dr. Esposito
Both nerve bundles saved. Margins clear.
Gleason score stayed at 3+3-6. Cancer contained to prostate.
1-2 pads a day. No problems at night.
ED 25mg viagra at night. Usable erections 1 day after catheter was removed.
First PSA Oct 2008 <0.1


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 206
   Posted 12/9/2008 12:18 PM (GMT -6)   

Devlin   you are WAYYYYYYYYYYYYYYY  EARLY in recovary   do not RUSH  or get frustrated , actually after 6month you are doing well at 30% and maybe even ahead of the curve, i had an open surgery with nerve sparing and TODAY i got back from my 18 month check up, it took about 10 month of work to start feeling any kind of erection, and at 12 months i turned the corner  and was able to hav intercourse with Viagra, today i am 80% natural  and almost back to 100% with meds, desires are still something to be desired , however function is getting better and it does take 18 to 24 months to get back to normal functions (almost) nerves are delicate and once even touched and pushed , regardless of the fact they preserved, it takes a LONGGGGGGGGGGG  time to heal... be patience and keep up the good work , Pumping, Meds and Masterbations  will pay off at the long run ...

Good Luck !! smilewinkgrin


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!!!!


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/9/2008 5:12 PM (GMT -6)   
I too am way early (6 wks post rrp). Quick question: Trimix is an injection? Can you give some details on how this works? e.g. when inject versus when it produces usable results (minutes, hours, days, etc.)?

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/9/2008 10:05 PM (GMT -6)   
It can take about two years to fully recover natural erections, if you are going to recover them. However you can start having unnatural ones much sooner -- this will make the delay much more tolerable.

I had my first injection exactly one month after surgery and first sex too (somewhat gingerly!). If you feel ready for it, and your doc agrees, I say go for it -- you'll feel a lot better when you discover that department is still all working!

The advantage of injections is that they still work even if you have no nerve function at all. Bimix, trimix, and Caverject are injections direct into the side of the penis. Ouch! you might say. But I find it only a little uncomfortable, and the after effects are well worth it. I use bimix, (only two ingredients), and find I have a very usable erection after 10-15 minutes. A bit of massage helps to get things going.


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 

Post Edited (Piano) : 12/10/2008 3:15:00 AM (GMT-7)


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/10/2008 12:14 PM (GMT -6)   
Well, I did in fact cringe and say Ouch!, but will try to focus on the results. Thanks for the info.
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