Peyronie's Disease Treatment Results

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hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/16/2009 9:33 AM (GMT -6)   
After being on Edex and Trimix Injections for 9 months, I have started to develop a curve that is related to Peyronie's Disease. I know there are alot of old threads on here about it, but I'm curious to find out if someone has had success recently in treating it. I saw my urologist the last week of June and he diagnosed it right away. He put me on Vitamin E 400 IU (3 times a day) and said I should use a VED extensively.
 
Has Vitamin E worked for anyone? The PD websites are very contradictory in regard to Vitamin E. Some say that it's worthless, other's swear by it.  
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


offpsa
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 7/16/2009 10:27 AM (GMT -6)   

I got peyronnies disease some 10 years ago.  I took more vitamin E than you are for 3 years, no change. I never did anything else to try to cure it.  As the disease moves slowly up and back down the shank, it lead me to believe the vitamin E was working, but it wasn't. 

There was a period of 2 years where I didn't try to have sex, it was awful, it never hurt, but it was crippled, like a broken stick.  Then I got prostate cancer, but now I am fine, I still have peyronnies, but it is milder, just a lump, so I am capable of sex.  Thank goodness I was large in the beginning, because I am shorter now.

I've read that too much vit E causes prostate cancer, and I sure wonder if that's what caused mine.   I have no idea what caused my peyronnies, as I am a very healthy guy.  Was it depressing.

I hope you don't really have it, or that yours is gone before you know it.


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/16/2009 10:43 AM (GMT -6)   
I'm pretty sure I have it but the curve is only 15% so I'm still functional. My urologist and the web sites all agree that the cause has not been discovered. And that it is not a result of the open Surgery.

Anyway, I don't have to worry about the prostate cancer. That's all gone and my PSA is remaining at zero.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 7/16/2009 5:30 PM (GMT -6)   
Welcome to the Peyronie's Club! We are a small  group I guess given the number of postings. I too have Peyronies, mine developed after doing trimix injections for about six months. My urologist/surgeon wasn't very helpful at all on this issue, He said there wasn't much I could do about it. nono Isn't that great.  He did tell me to take Vitamin E, which I have. I also added l-arginine which I saw on a Peyronie's website somewhere.
     The other thing I did to try and help this problem is purchase a Quick Extender pro traction device. The device is recommended by the Chicago Urology Institute, a reputable clinic.  This is a light weight metal brace with springs on it that puts your penis in a stretched position when wearing it. Some guys use this device to make their penis longer, all I want it to do is make it straighter. You wear the brace and tilt your penis in the direction opposite the curve you have by pulling on the plastic tubes. I wear it all day long, taking it off only when sleeping, exercising, or going to the bathroom. I've worn it for over a month now. At first it does take some patience to get used to wearing it, it doesn't really hurt but is awkward at times when sitting and going into standing. I don't remember now that I'm wearing it most of the time. The doctors say you have to wear this thing 8 hours/day for up to 8 months to get rid of most of your curvature.
      The question is of course does it work? I dunno, my penis may be slightly straighter than it was a month ago. It certainly isn't curving more and more like it seemed to be before I started wearing the device. I do notice that when having sex with wife that my penis is easier to straighten for penetration than it was before so I think the scar tissue from the Peyronies Disease is looser. I will continue to wear it because, frankly what else can I do? Like you said the vitamins may or may not help. In theory this device should work, anyone who has seen those African girls with long necks from  the rings knows you can stretch tissue. I also only inject trimix once/wk now to minimize further scarring, using the lowest possible dose to get a penetrable erection. I supposse I should quit using the trimix altogether but then no sex at all would really suck. If after 2 years from surgery I haven't improved anymore I will seriously investigate getting a penile implant.
    
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/16/2009 8:01 PM (GMT -6)   
mspt98
 
My experience is similar to yours. Have you tried using a VED or pump? My doctor recommended that, also. But I think that I may have caused the PD by using too tight of constriction rings last fall when I first started with the VED. Because my scaring is right where I had the rings.
 
Anyway, when I use the pump now, it's without any rings. I just run the battery powered one and keep it on for 30 minutes.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 7/16/2009 8:50 PM (GMT -6)   
I have seen suggestions that Peyronie's can be caused by injections, but others have rubbished the idea. It seems to me that you might be able to correct curvature by injecting more on one side than another. The usual advice to to alternate injection sides. In my case, I have a very slight curvature to the left. Should I inject more on the left or the right side to try to correct this?

Also what is scarring like? In my case, I have a few little bumps near my usual injection sites, but they are not what I would normally regard as scars.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/16/2009 10:27 PM (GMT -6)   
My curvature is up, so that one is kind of hard to correct. When you go to the PD web sites, it seems to be the most common type of curvature.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 7/17/2009 8:48 PM (GMT -6)   
I had tried the vaccuum device a few times but never could really get it to work right. Even when I shaved. As to the PD  I don't feel any bumps on the side of the penis that curves. But there is definately a noticeable  permanent skin discoloration in a  narrow line from base to head on that side so that must be where the scarring is. I don't know if this was caused by having the VED too tight one time or from having some 4 hour erections from trimix when trying to get the dosage right. I've thought about just injecting my once/ wk trimix on the R side to prevent more curving to the left, but the american urological nursing association and California uro groups still recommend alternating each side with each injection. I am on my own with this problem since my uro/surgeon says he doesn't treat many PD guys, he recommended me to his partner. But I just don't have the time to go see him since I live out of the geographic area where I had the robot surgery, nobody did it locally. Ill keep wearing the quick extender device, I have no other ideas on this.........
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/17/2009 10:32 PM (GMT -6)   
I have the plaque on the top very close to the base of my penis. When the urologist examined me, he recognized it right away. It's like a hard muscle under the skin that doesn't relax. It also extends about one inche up the shaft so when I inject, the curve goes up because there is more blood flowing in on the bottom side.
 
It outright reduces the blood flow on that area of your penis  which is why you get the curve. I strongly suspect that I used too tight of a constriction ring last fall when I was first using the pump. The Peyronies Disease Society has a section where many researchers believe that trauma to your penis can be one of the reasons for PD. For me, the plaque is exactly where I had the very tight rings.  
 
 
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 7/17/2009 11:35 PM (GMT -6)   
Interesting post, after reading it I went and examined myself to see if I could find the muscular area you refer to. I could not. All I find is that strange discoloration in a line  on the L side of penis from base to top. Please keep posting if you find out anything new about this strange condition. This appears to be a rare and puzzling problem with few answers, and a condition nobody wants to talk about. Its hard enough to get anybody to want to hear about prostate cancer, nobody wants to hear about this. Please let us (me) know if you learn anything more, I am out here in the twilight zone for sure............
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/18/2009 8:36 AM (GMT -6)   
Actually I couldn't find it at first either, the doctor had to show me where it was. I have found that when I inject or use the pump, the plaque is more noticeable. With the injection, I can actually feel the engorged area inside my body, then the plaque (which is a reduced area) and then  the engorged part of my penis.
 
On most of the PD web sites, the conclusion is that it may clear up by itself in 10 to 12 months. But if it doesn't, the plaque has become calcified. Then you are looking at surgery or implants. So I'm doing the vitamin E very diligently.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 7/18/2009 1:51 PM (GMT -6)   
You were right hb, after reading your last post I went back one more time and with enough prodding and pressing I did find a muscular ridge 1/2 way down the L side of my penis. This ridge is actually visible under the skin if I bend my penis enough to the right. So there's the culprit. Let us know how you did with your program, I'll continue with vitamin E, arginine and traction device to see what happens for me..
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/28/2009 9:00 AM (GMT -6)   
mspt
 
I have good news. My plaque is receding or it has stopped growing. I think mainly due to the Vitamin E and Pump use. I did switch to a all Natural source for the vit E. One that has all four Tocopherols as opposed to only the Alpha. Whole Foods has the brand.
 
I suspect that I may have found one source or reason for this to occur. It showed up within a month after my noctural erections re-started. I had been wearing really tight underwear at night which I got to hold the pads after the surgery. Had never thrown them away last year.
 
I suspect that the really tight underwear was actually restricting my penis from getting hard in the middle of the night and causing the trauma that you read about with Peyronies. So now I wear nothing to bed.
 
We'll see if this continues.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.

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