New member with an old problem.

[Knight]

Hello! I have been dealing with Peyronies for approximately 7 or 8 years. I honestly don't know where it came from or even when it started. It has been like a bad dream but I know it could be worse (which is one of my fears). I have seen 2 urologists and both seemed a bit baffled and unsure. They were kind enough, but neither had any answers. I am now entering my 2nd week of Transdermal Verapamil 15% treatments from P D Labs and researching them further is what led me to this site. I felt hope when I started the therapy but after reading the posts on this site I am less optimistic that this miracle jell is going to straighten out the issue (bad joke, I know). I live with almost constant discomfort and itching. It's almost like I can feel my tissue crawling inside my body. The jell actually seems to be making that worse at times.

I can still penetrate  , but it's nothing like it used to be (or should be). My wife is very committed and understanding so that isn't a problem. But mentally I don't know if I'm strong enough to live with this. Other than Peyronies Disease I'm in excellent physical condition as a body builder of 20 plus years who still lifts and runs consistently and maintains a very rigid diet. I'm very much a "perfectionist" and everyone on this site knows what we have is anything but perfect. But I am a fighter, so at this point I'm in it for the long haul to either defeat this curse or at least lessen it's effect on my quality of life.

I came here looking for the secret cure or at least a few success stories. So far I'm not finding much for hope but I will keep reading!

Sorry we had to meet this way!  

[LWillisjr]

knight,
There are many success stories, but no secret sure. There are multiple therapies up to and including surgery. No one thing works for everyone. But with your positive attitude and the suggestions on this forum you have options to fight this.

What are some of your symptoms: pain, ED, degree of curvature, etc.?

[Knight]

Curvature to the left (even while flaccid), more discomfort than pain but it is almost always there and itching, itching and more itching. I would say it points at about 10:00 while erect. I don't have any problem getting erect but it is uncomfortable. I have a very hard lump on the left side down at the very base and it runs across the top and even on to the right side about 1/2 way up the shaft. I have a very distinct and scary looking hour glass thing going and while erect it is quite thin at the very base.

It's extremely hard to talk about and even posting on an anonymous internet site is difficult.

The 2 urologists I have seen both recommended doing nothing as long as I could still penetrate. They said they knew of no real successful options or treatments. The last one gave me the Peyronies Disease Labs pamphlet but he didn't think Transdermal Verapamil 15% would do me any good because my injury is so deep. But after reading the literature and thinking about it I decided trying this had to be better than doing nothing. When I found out my insurance would cover it I felt hope because they must know something about it. Now after reading posts on this site I'm not sure what to think.

When I found this site I was surfing the net trying to figure out what this stuff actually is and what the chemical make up of it is and how it is made. I still haven't found those answers....

I don't want to waste a year applying irritating snake oil twice a day if the stuff doesn't work.

[james1947]

Knight

I am proposing you not to waist time with Transdermal Verapamil. Read the Verapamil board on the forum and you will understand from where is coming my advice.
Better you go on Pentox, low dose Cialis and Ubiquinol (or CoQ10 if you are younger than 40). This combination helped and helping many on the forum.

James  

[Knight]

Thank you for the advise James! I actually ordered L-Arginine and CoQ10 last night and plan on reaching out to my urologist for Cialis and Pentox today. I am 53 so I will look into Ubiquinol as well.

I'm also considering the VED thing based on what I am reading on this site. Would you recommend that as well? I found a few on EBay last night, but not the specific brands that seem to be preferred on this site.

What a frustrating disease to deal with...

[Jonbinspain]

Knight55387


You may wish to look at Citrulline Malate as a better alternative to Arginine, especially if you use the gym. Whichever way, I would recommend that you buy in powder form - that applies to ALC too, it's far cheaper, and both are easily dissolvable in water.

[james1947]

Knight

Our body uses Ubiquinol. CoQ10 is transformed to Ubiquinol in our body. While getting older, our body makes this process more slow or very slow. This is the reason to take Ubiquinol.
The only reason to take CoQ10 is the price, much cheaper than Ubiquinol.

Regarding VED, I am using it not so often now, but in the past using it daily it helped me to regain some length and girth.
You have to know that using VED needs consistency and it take long time to see results. Myself had results already after some two months.
By the way, I am using a cheep VED and it works fine. The medical VED is not available where I am living now.

James  

[Knight]

Thank you for the explanation James. I will order some Ubiquinol as well! I made an appointment with the uro for next week to convince him to give me prescriptions for Pentox and Cialis. I'm going to go in armed with the information I have so far pulled from this forum to get him some education on Peyronies Disease.

I will do more research on the VED before making a purchase. I just wonder how a man with a family can find the time and/or privacy to go through that routine so consistently. But as frustrating and as uncomfortable as this condition is I'm sure I can figure out something if it is going to have a positive result.

I often wonder if my body building diet of high protein and all the supplements I have used and experimented with over the last 23 years had anything to do with causing this? I honestly don't remember any injury during sex that caused me any pain. But I suppose it doesn't really matter where it came from, what matters is how to defeat it and have as normal a life as possible.

Thank you for your help brothers! It really helps just to know I'm not alone and to realize others are in far worse shape than I am. My heart goes out to them.

[james1947]

Knight

One of the reasons I can't use now VED daily is because I have moved temporarily to a very small house and with an almost 15 year old son and 4 years old daughter is almost impossible to have any privacy.
Regarding Peyronies you are right, doesn't matter how we got it, important is to treat it.
It may be also from many micro traumas, not just from a big trauma.

James

[Knight]

I can definitely relate to the privacy issues James as we still have a 14 year old boy at home! Old Man is already giving me some good ideas on figuring out a schedule that might work. I still have much to learn about the VED before making the commitment but I'm very interested!

That Transdermal Verapamil sure doesn't seem like any long term solution. I think it burns worse that the Peyronies Disease itches. Miserable.....

[inkhorn]

I can definitely relate to scheduling problems. Grown children coming and going, grandkids, dogs all over the place. How about this one. Trying to fit in getting laid and needing to use the VED to get the erection!!Got caught a few times, oh well. A good trainer once said to the guy who said he didn't have time to work out, "There is somebody on a tred mill right now that is a lot busier than you". Keep marching brothers. Regards Inkhorn  

[IhatePD]

knight55387,

My urologist prefers using a traction device over a VED. He likened it to using braces to straighten out your teeth. You apply traction over a period of time rather than just momentary application of pressure.

That said, I am also using a VED and traction and I personally believe that the VED is very helpful and will continue to use it. Using sweat pants and work out shorts in the summer, I am able to carefully wear the traction device around the house without anyone knowing it. The VED requires privacy in the bathroom.

I get up at 6:00 AM everyday now so that I can start with the traction and use the VED before I shower. I am making the time necessary to attack this disease.

If I am reading or watching baseball and very soon football game, I will have my traction device on and I have been averaging about 6-7 hours per day. Please understand, I have a very strong tendancy to "over do" things although the Andropenis traction device recommends building up to 9 hours per day of traction, no more than 2 at one time.

If you are going to use traction, I don't like the strap type devices as it "crushes" the penis just behind the glands to hold the penis in place. I have modified my Andropenis with the Vac3 adapter from autoextender.com and it is much more comfortable. They sell their own traction device. The vacuum type device allows me to wear it a lot longer each day. This based upon my personal experience.

Find a way and make the time to deal with this disease.

[Knight]

You guys are all awesome! You've given me much to think about and more importantly hope that together we can find a way to overcome and defeat this bitch of a disease! Thank You! I will take all suggestions to heart and do my research to figure out what might work best for me. As I proceed I will report back here to share results or any new findings. Thank You!

[Knight]

Well, my visit with the uro didn't go the way I had hoped. He gave me a box of Cialis but refused to write me a prescription for Pentox simply because, "he had never prescribed it before". What a flippin moron. I told him about you guys and that some were having success using it in combination with the Cialis. He even looked it up on the internet right in front of me and even though the information he found stated it was being used to treat Peyronies he still refused to write a prescription. I felt like breaking his junk off and seeing if he still felt the same way about Pentox and still refused to think outside the box for possible treatments.

He did agree that a VED would be a good idea (to wit I wondered why he never told about the VED the first time I saw him) but he wants me to meet with his rep and see if we can get my insurance to cover a more expensive model. Old Man has already hooked me up with a resource for a reasonably priced single cylinder so I don't know if it's worth wasting another week or 2 trying to get something for nothing out of my insurance company.

He also wants me to continue trying the Transdermal Verapamil even after I expressed my concerns based on the testimonials I've read on this forum.

I'm blessed to NOT be in as desperate a situation as some of you are, but I just don't get the stubbornness of these so called trained professionals. This guy gets his "certification" from Dr, LeVine out of Chicago, whom I have heard mention of on this forum, but apparently Pentox is not part of their school of thought.

If the stuff (Pentox) isn't mood altering, addictive or come with mega side effects why should he give a rats ass if I want to try it based on other peoples success with it?

They don't give out common sense when these guys get their degrees do they....

[IhatePD]

knight55387,

I had the same experience with my urologist. I had been going to him for an enlarged prostate when I developed Peyronies Disease in September 2012. His response was the usual take some vitamin E, wait six months to see what happens and sometimes it goes away on its own. He told me there was a new drug in the works that looked promising - Xiaflex. He told me had a patient that was part of the trials that told him he improved "80%", whatever that means. I asked him about Pentox at my six month visit and he looked it up and told me he didn't know anything about its use for Peyronies Disease. This doctor is great for all other male issues except Peyronies Disease.

So, through this forum, I found another doctor to treat my Peyronies Disease. I just wish I had done it sooner as the disease progressed in the seven months I wasted.  He was part of the Xiaflex trails and was very positive on its use. Now I am on Pentox, Cialis, Actyl-L Carnatine, L-Arginine, VED and traction. I believe I am starting to see some progress as the distal narrowing (from the middle of my penis to the glands) seems to be a little fuller right not.

So, I now have two urologists, one for my prostate and one for my Peyronies Disease. I will do whatever it takes to beat this disease.

[Jonbinspain]

Knight 587;

Re Pentox, everybody reacts differently to it - or so it seems from what read here. In my own experience, there were some side affects to begin with;  anxiety level increased ( I don't have a problem with that)  stomach doesn't seem to like it much either. However, if you persist, in most cases these side effects will diminish, or disappear, as the body becomes accustomed to the Pentox.  

[Knight]

I'd sure like to give Pentox a try. I think I'm going to start over with doctors and try to find one that is up to speed with using this drug to treat this condition. My doctors reaction to my  request was so negative I'm still just baffled. I'm thinking of looking at uro's at The Mayo Clinic in Rochester, MN. Anyone had any experience with the Mayo Clinic for treating Peyronies?

[chefcasey]

Knight:

I understand your frustration with getting on pentox.  If you really want to try it, but don't want to jump from doctor to doctor hoping one of them may prescribe it, you can always order it off an online pharmacy.  I know some of them are shady, but I have found some good ones myself as well as others here on the forum.  I'm not promoting them, but I've ordered from river pharmacy and it is the real deal, and cheap.  

[Knight]

I am willing to look into any and all options. Can you hook me up with a reliable link?

[james1947]

https://www.riverpharmacy.ca/index.php
Is my supplier.

James

[Knight]

Thank You!