Intro

[pianowire]

Hello everyone,

I have been signed up on this forum for a while but never used it much in the past. I've had Peyronies Disease for at least 5 years now. There is so much I could write about it that I could write a small book. That makes it difficult writing here. Maybe I am too much of a perfectionist.

Let me start by telling you how my Peyronies Disease is slightly different from most people's. I don't have a curvature and I've never really had any physical pain. Except for the one day I was having sex for the first time since about two years and I noticed something was wrong. My Peyronies Disease has resulted in a major loss of girth and length. In the active phase I remember having a slight curvature but no more than 15 percent. I have an enormous thick scar that runs al the way from base to just about under glans slightly to the left topside. I'm a grower not a shower and when it grows it is now about 1.5 inch shorter than it was before Peyronies Disease. I was lucky to have been above average and now apparently it is average or a little under that. You might say, 'what's the problem then?' It's a huge problem for me and that is all I need to say about it. I am sure you more than anyone else can understand this. Not to mention the ED it has caused for the majority of the past 5 years. Whether the ED was of a psychological nature or a physical one I will never know but I am glad to say this has gotten better.

The following I am writing hoping that some of you might recognize a pattern. The onset of my Peyronies Disease was at a time of enormous stress. I don't want to get into details but trust me it was huge. A month after realizing something was wrong my then girlfriend and mother of our kid left me. Not because of the Peyronies Disease but as a result of all the stress and large financial loss. At the time I was drinking copious amounts of coffee and eating liqorice (not good for T-levels). I was also eating spelt bread which I now know I do not tolerate well. The stress and the spelt caused terrible constipation at the time. A few years later I also learned that my T-levels were also extremely low. This must have been the case when the Peyronies Disease first appeared due to stress. Hi levels of cortisol and adrenalin can be detrimental.  

On my journey I have made a lot of mistakes and perhaps any of you reading this in time might be able to avoid making the same mistakes. The first mistake I made is that I did not do much about my condition at first. I was extremely busy saving what was left of my life. Financially and in any other way imaginable. I should have at least in the active phase tried all the possible oral remedies out there and who knows what might have happened. The next mistake I made is that I went to see the regular GP and he referred me to a regular hospital where I was diagnosed by the hospitals urologist. I now know how little they know about Peyronies Disease. The notion that Peyronies Disease must be the result of physical trauma is preposterous. This was one of their beliefs. They also told me to continue having sex as much as I could. With whom? A prostitute? I was a Rockstar at pulling women but not anymore I was. Not at that stage of my life with Peyronies Disease and ED. I haven't been in a real relationship since. I asked the urologist about Xiaflex which was only just introduced at the time. He adviced against using syringes and to some extent he did have a point which I learned later on. Nonetheless I have learned to despise western medicin. All they are capable of is prescribing pharmaceuticals and use knives. And because they limit themselves to these modalities they do not have a real cure for Peyronies Disease.
The third mistake I made is that I did let people stick needles in my dick which only made matters worse and cost me money. The clinics that promise you a bigger unit by injecting PRP, using shockwaves, etc just as easily claim that they can cure your Peyronies Disease. The problem is that they don't have a clue about Peyronies Disease. I later learned that a true Peyronies Disease specialist would use ultrasound while administering the injection and would inject into the scar only. These clowns injected everywhere and then gave me a VED device and told me to go use it that same day. That wasn't a very good idea. The punctures from the injections were then blown up with a VED and created entirely new scars in entirely new places. I should have been told to wait at least a week.
The fourth mistake I made is that I had another round at PRP but this time with a renowned world famous Peyronies Disease specialist. To cut a long story (and lots of money) short, it didn't help one bit. If anything there is now a new small scar on my scar.

I have tried many things in the mean time. I have tried eating raw food but wasn't able to stick to it. I have been in ketosis without interruption for at least 6 months. I have done Intermittent Fasting 16/8 for two years straight. I have jacked my T-levels up to far above where they should be with exercise, clean water, Tongkat Ali and lots of other supplements. I have done chelation. Neurotherapy. I have had my field read and healed with the same equipment. That actually showed me that I had adrenal fatigue and was getting too much aluminium in my system. I have done a one week detox with more enemas than I care to remember. I did a five day water fast. I did a Teloscan with the subsequent healing. I have looked at the mental aspects that might be causing Peyronies Disease. Sounds weird? Lookup Dr. John Sarno and you won't think of it as weird anymore. His theory is that the pain in his patients was caused by a local ischemia in the muscle caused by unprocessed rage in the subconscious mind. And as it turns out scar tissue can come from trauma but also from ischemia. Coincidence? I think not. The people who really understand cancer, and I don't mean oncologists, will be able to tell you interesting stories about the mind body connection and cancer. Radical Remission is an amazing book on the subject. They made a documentary on Sarno called All the Rage. You need to see it a few times before it hits home, I read all Sarno's books.
And before I forget, I tried the Amazing liver cleanse but not sure if I got it right the first time.

I have recently started taking Pentox and Voltaren gel locally. I might even go for the Pentox injections and I am also looking at stemcell treatments. Yes injections again, if you don't take risks you won't get results. Where I live I can get Pentox without a prescription and it is dirt cheap as well. Cialis I can buy the same way. If anyone knows about stemcell treatments in Europe please let me know. Looking at dryfasting as well. Taking all kinds of supplements still for higher T and atophagy without fasting. There is a new company in Israel that analyses stool samples and then through a mobile app gives you bespoke advice on which foods to avoid and which to combine for lower bloodsugar responses. They analyze your biome which is unique to you. Amazing, unfortunately only available in the US and Israel at the moment. Ouch. I really want this.

My advice to people who only just got diagnosed? Get extremely healthy extremely fast. If you are overweight lose it all. Check your T-levels and if need be fix it. Hypogonadism is one of the potential causes of Peyronies Disease. Get healthy in any other way you can think of. Be wary of pharmaceuticals. Yes I am on Pentoxifylline but there are studies that show this can have a positive effect and it is not a heavy pharmaceutical agent. I don't experience any side effects. If you smoke, quit. If you drink, drink less or if possible stop doing that. I like my coffee but I stopped drinking coffee. That helps reversing adrenal fatigue. Your body can heal itself but it will only heal this when everything else is in perfect form. Let's say your body does not share your priorities. The body never lies. What is it trying to tell you?

I am convined that life happens for you and not to you. I have learned a lot of stuff on this journey that otherwise I would not have learned. So in part I am thankfull but I am praying for an end to this. I will never give up.

Any feedback is more than welcome.

[Bubba dawg]

I had low T and was really stressed out when my peyrones started. Just had surgery and had to be out of work with no pay since I am self employed. Just was really stressed!. I had lost 50 lbs due to stress. I was just 10 lbs over weight before that and very active. I dont think we will ever figure out what causes it. We were stress but many weren't having that problem. Could have many causes and many solutions

[pianowire]

Stress can very easily cause low T, especially if the stress continuous over longer periods of time. Low T messes with your body's capacity to heal wounds. It is very interesting what stress does to your body. It elevates blood sugar levels. If you take in lots of cafeïne you create a temporary state of insulin resistance making matters worse. People under long bouts of stress often have skinny buts and legs because gluconeogenesis converts the protein in their muscles to glucose. I am personally convinced that you need to get your T levels where they belong before you can cure your peyronies. I am also a strong believer that metabolism and insulin are involved. And don't get me wrong, I'm no advocat of T gels or creams. I tried those and they are horrible in the long term. I stopped that and now I am boosting T in natural ways only.

[Paolo]

I think a cascade of stress started off my peyronie's too, IMO it has a causal element in peyronie's manifestation.
I have found Gelatin 'hugely' beneficial in calming the mind due to the many amino acids contained within.
Paul.