Peyronie's following prostatectomy??

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StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 357
   Posted 7/3/2007 1:24 PM (GMT -6)   
I visited my urologist last week, and he told me that the curving in my erect penis is due to plaque that has formed post surgery. He said I likely don't have Peyronie's. Just doing some searches online, though, it seems that this is likely Peyronie's. My urologist told me to take vitamin E.

- has anyone else experienced this? any luck in correcting it, or is it permanent?

- have injections been successful for you in producing erections despite the plaque? do they worsen the plaque?

I will be calling my urologist back, but thought I would check here for other opinions...
____________________


Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: 3+3=6
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches
post-surgery Gleason score: 3+4=7; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006)
- 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007)

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis or Viagra every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (1 for 5)
- Trimix batting average: .500 (1 for 2)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/3/2007 2:20 PM (GMT -6)   
Yeah, Raheeb,

They kinda forget to tell a man he has Kelami Syndrome (urethral manipulation syndrome) as a potential side effect. Paul has the same thing. His has neither worsend or improved. He has had to resign himself to a regualr routine of meds and a pump (2-3 times a week) to maintain his length and girth. There is a site you might be interested in called Peryonies Disease Society.

PS: And yes, some men do recover and yes, shots are okay according to the Uro we use.

Good Luck, Swim
 


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 357
   Posted 7/3/2007 3:13 PM (GMT -6)   
swimom:

- did anyone suggest taking vitamin e? my urologist mentioned this and said 400 mg. I assumed he meant orally, over-the-counter pills. Unfortunately, my urologist is out of the country until July 17th, so I can't reach him. I spoke to some doctor-on-call, he said maybe the doctor meant cream form for the vitamin E.

- when you say "pills", do you mean viagra/cialis/levitra?

- i have made an appointment to see a sexual function specialist on Thursday in the Urology department @ UCLA (where my urologist practices). Sounds like I will get no details from anyone there until then. These doctors are getting on my last nerve (which, unfortunately, isn't quite working!)!
____________________


Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: 3+3=6
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches
post-surgery Gleason score: 3+4=7; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006)
- 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007)

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis or Viagra every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (1 for 5)
- Trimix batting average: .500 (1 for 2)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/3/2007 7:28 PM (GMT -6)   
Raheeb,

Paul takes 400IU vitiman E twice a day. Yes, he does take Viagra every other night still.
 


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 357
   Posted 7/6/2007 12:48 AM (GMT -6)   
Well, I went to see the ED specialist at UCLA Urology today. He said he thinks I have plaque (Peyronie's) because I was injecting in the wrong location (i.e., not at 3:00 and 9:00). I think I did inject in those locations, but whatever... He did inject Bimix sucessfully, producing an erection in which he observed the curving.

Anyhow, he prescribed:

- no sexual activity for 6 weeks
- daily doses of Cialis, L-arginine and pentoxyl-something-or-other
- come back in 6 weeks

So, one step up, two steps back....
____________________


Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: 3+3=6
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches
post-surgery Gleason score: 3+4=7; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006)
- 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007)

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis or Viagra every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (1 for 5)
- Trimix batting average: .500 (1 for 2)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/6/2007 5:09 AM (GMT -6)   
Strictly,

Sounds like a plan! Pentox is successful in reducing scarring in some early stage PD's, from everything I've read. The mix of medications he's (the Doc) suggested is the norm but the no sex order isn't. Stimulation is supposedly very very good for non painful Payronie's. So is a pump. if you have no pain, I'm not sure why he says no sexual activity.

Mine is diagnosed as urethral manipulation syndrome; scarring along the urethra caused by catherization. There is no palpable plaque or nodules. Just a ventral curve. Came on suddenly. It is somewhat less of a curve than it was I think so something helped. Maybe just time.

Have you read any of the Peyronie's Disease Society? May find it useful.

Good Luck, Paul
 


StrictlyInc
Regular Member


Date Joined Dec 2006
Total Posts : 357
   Posted 7/6/2007 2:40 PM (GMT -6)   
Paul -

I am just starting to check out the Peyronie's Disease Society. Thanks for that "link".

I am also looking into getting a second opinion, in particular regarding the six weeks of celibacy. Trying to find a good list of ED specialists.

I can't feel anything when flaccid, but after a successful injection I do notice areas of swelling, and of course the bends.
____________________


Prostate cancer diagnosed: May 15, 2006 (age 40)
Gleason score: 3+3=6
daVinci radical prostatectomy: July 25, 2006
size of tumor: approx 1.1 inches
post-surgery Gleason score: 3+4=7; negative margins from surgery

- number of pads/day at 3 months after surgery: 3 to 5
- number of pads/day at 4 months after surgery: 1 to 2
- number of pads/day at 6 months after surgery: 0 to 1

- 1st post-surgery PSA: 0 (Nov 2006)
- 2nd post-surgery PSA: 0 (Feb 2007)
- 3rd post-surgery PSA: 0 (May 2007)

ongoing post-surgery treatment: Cialis every other day, Viagra "on-demand", ErecAid pump daily Cialis or Viagra every other day, ErecAid pump twice daily (when I can manage it)

- PGE1 batting average: .364 (4 for 11)
- Bimix batting average: .200 (1 for 5)
- Trimix batting average: .500 (1 for 2)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/15/2007 8:25 PM (GMT -6)   

Helping to keep this important thread together for others who will follow…

Thank you for sharing and continuing to update…

 

See new…thread started by: StrictlyInc

08-14-07  Update on my Peyronie's


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 2/26/2008 9:05 PM (GMT -6)   
Re. Peyronie's....I have had it since I was 33 years old....now 57.
 
When I first got Peyronie's, there was pain and curvatures that made erections almost impossible, and penetration definitely impossible.  I started using 400MG of vitamin E and in 9-12 months, things improved greatly.
 
Have had slight curve to the left and some hardness on top of penis near the base, but comfortable intercourse for all these years.
 
Just beginning to use a pump (doc said it was okay despite the Peyronie's) and so far it has not seemed to harm the Peyronie's in any way.
 
I hope this helps you some.
Danman Bob
Age 57
Prostate removal November 2007
Gleason score 9, TC1
Biopsy result - 9 of 12 sticks showed cancer
Despite high Gleason score, cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (1 to 2 pads a day)
Began using Osbon Erec-Aid Esteem manual pump for therapy mid-February 2008
Begain using Viagra 3 times a week December 2007 to stimulate blood flow

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