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RoyHobbs

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Long time reader, first time poster
« on: December 27, 2012, 07:07:00 PM »

Hello gents-

I'm 35 and first came across your forum in July of 2011. I figured it was time stop peeking through the window and actually come inside. Here's my story:

In late May of 2011, at age 33, I started experiencing pain while erect. It wasn't until July that I came across information on the internet that led me to the possibility that it might be peyronies. My job at the time included a massive amount of travel. So unfortunately I waited until late Sept. to finally see a doctor. So four months in I finally saw my GP who referred me to a urologist. I live in Los Angeles, by the way.

At the time of my visit to the urologist I was still experiencing painful erections, and while I was able to locate one small plaque beginning to form on the right side of my shaft just below the head, and I was able to feel an area of pain on the top of the shaft just below the head (where another plaque was forming), I showed no curvature.

My doctor seemed knowledgeable and immediately agreed with my GP's (and my own) diagnosis of peyronies. He said it was a positive sign that I was still experiencing pain because the meds would have the greatest effect in the inflammatory stage. He prescribed L-Arginine 1000mg, Cialis daily 5mg, and Pentox 400mg 3x daily. I was already taking vitamin E, but I upped it to 800ui a day. He also told me about the VED, but the idea of my 34 year old self subjecting my penis to a daily routine of this was so embarrassing that I told him I wanted to wait. I should also mention that he did not conduct an ultra sound on my plaques, although he did do it on my bladder- new patient and all.

I checked back in a month later with a follow up appt. This was the beginning of November 2011 and I still showed no physical signs of peyronies, beyond the plaques. The tender portion on the top side of my shaft had grown and I now felt small plaques on both the right and left sides just below the head. Still, I swore off the VED. He agreed we should wait.

Finally, in mid November 2011, five mos. after first experiencing pain while erect, I noticed a dent on the left side of my shaft just below the head. And of course this freaked me out. Up until then my mental state had remained relatively stable. But seeing the physical change and being single, I started to experience major anxiety.

Slowly but surely over the next several weeks, the physical state of my penis began to worsen. I lost a little bit of length and girth at the top third of my penis, but I was never huge to begin with (roughly 6 inches). In January of 2012, I finally decided to order the VED, but I would have to wait another month before supplies became available through my doctor's office. I began in Feb. After a month of use, my doctor saw no change in curvature (now around 65-70 degrees) and had me meet with a rep to make sure I was doing it right. Turns out I wasn't. I was removing the penis between each cycle and reapplying lube.

I revisited my urologist again a month later in March and with still no change he said the VED was unlikely to work. I asked if this might be due to calcification and he said maybe. And still he did no ultrasound. He also told me I could stop taking L-arginine and took me off pentox. He kept me on cialis 5mg. Finally, he said surgery might be the only step left if I couldn't perform sexually.

Over the next few months my psychological state would bounce back and forth between "my life is over!" and "it is what it is, and at least I'm not paralyzed and or have burns all over my body." These are the kinds of things you start to think about. I also entered a 6 month sexual dry spell.

Now this entire time I had been reading this forum and gaining as much information as possible. I started the 26 week VED protocol in March and have tried every supplement under the sun. Finally, in July of this year, because I felt like I might be back in a inflammatory state due to some pain, and based on what I read here, I called my doctor's office and asked if I could be put back on pentox. They said it wasn't a good idea because it was a blood thinner and that it was unlikely to do anything after the inflammatory state anyway. To recap, I was only on 1200mg day for six months (Oct-March). And that was that. I was doing VED and took cialis and every other supplement I had started taking myself. I added the L-Arginine back into the rotation a couple of months after I stopped (may 2012). I haven't been back to that urologist since, although he kept refilling cialis.

Fast forward to a few weeks ago. Thanks to this forum, I came across the infamous Dr. Lue. With xiaflex on the horizon and realizing that my urologist, while having best intentions, really didn't know the ins and outs of this condition (he hadn't even heard of xiaflex as of July of this year) I wanted a second opinion. I figured if somewhere down the road I needed xiaflex injections or needed surgery, I wanted someone who actually specialized in this area. And so a week and a half ago, 18 mos in to this wonderful journey known as Peyronies, I visited Dr. Lue. I'll post what he had to say in treatment section of this forum. Let's just say for now that it was refreshing to visit someone who knew what the f%$K he was talking about.

Today my curvature is at nearly 90 degrees. It's a straight upward curve, with a slight bend to the left. My plaques have adjusted and I now can't hardly feel any on my right side, but feel a slight one on my left where there's still a dent when erect. The upper half of my shaft, starting below the head, feels covered in one long plaque, the hardest section in the middle. That's where the bend starts. There are no plaques at the base and my erections are back to being full. And it appears I've regained some girth, but overall I'd say I've lost at least a half inch in length. Luckily, while not great, I'm still able to have sex. I've been with four partners since the curve topped out at 90 degrees, and no one has expressed pain. I guess because the bend is where it's at? I am with someone I really like an have only had sex once. It wasn't great, but she also likes it rough so I think I was nervous. I haven't told her about my condition and she didn't ask about the bend. Further proof that a lot of this is in our own heads.

Anyways, I want to say thanks to all of you for giving me a place to come for information and support. I'm sure there's a ton of guys out there who read in the wings but do not post.

Cheers,

Roy
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Skjaldborg

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Re: Long time reader, first time poster
« Reply #1 on: December 27, 2012, 10:21:55 PM »

Dr. Lue is great. Saw him a few years back and he and his team were incredibly reassuring and knowledgeable. (I live in Norcal, by the way.)

I got this at age 29 form a very minor injury during sex. Pentox got rid of the pain in a matter of weeks and did help return some lost size. I took it for a total of eight months and have continued to experience minor improvement since stopping the pentox almost 3 years ago.

Worst case scenario, there is always surgery. I suggest keeping with the pentox and cialis and following Lue's advice; he knows his stuff!

Best,

Skjaldborg
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funnyfarm

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Re: Long time reader, first time poster
« Reply #2 on: December 28, 2012, 12:31:47 AM »

Very good news, it seems most guys keep taking the pentox so I am glad you were able to discontinue and not lose ground.   What dosage were you on and how long did you have Peyronies Disease before starting ? Thanks
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When you are in tune with the unknown, the known is peaceful.
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