Freaking Out! by Kev

[freakingout]

Hi,

this is my first reply/post on this site and the site is very confusing. I was diagnosed with Peyronies this past Friday and I have been devastated no only by the effects of what it has done to my gear but mentally as well. I didn't get much from the urologist I saw except take 1000mg viotamin E per day and that it wasn't going to help, that I would never get the 2 1/2 inches in length i lost and it would only get worse in time. The Urologist dealt me a hand of doom and gloom and my firast symptoms first came upon me back in June and I didn't even give it much more than a "I'm just not into it tonight and when i am next time things will be normal" My gear curves to the right and it won't get hard at the base on the right side and it isn't painful and wasn't an injury that brought it on. I don't know why it happened but that it did and I am freaking out. I went to my cardiologist and told him and asked if maybe I needed a stint on one side and he laughed and said no, just testosterone injections and you will feel 18 again. Ok i have had 2 injections and I do wake up with wood but instead of it pointing up at my chin while shaving it points forward and off to the right like it is very sad. I don't know what to do so I started to read on the internet which the urologist strongly recommended i didn't do. He said there is nothing but false information and gimmicks to rip off the desperate that are victims to this disease. He told me that i should get used to it and face that there is no treatment and no cure. I am 50 years old and wasn't that gifted to begin with but was content with my 7 1/2 inch diamond cutter that stood at attention and got so hard a cat couldn't scratch it to maybe 5 inches kicked off to the right good for nothing but frustration when trying to have sex and it falling out over and over. I have lost my game here folks and need someone that will talk to me and tell me the truth and if there is anything that can fix my junk. I want my old junk back regardless of how unhappy i was with it in the past I would be more appreciative now knowing that this would've happened to me. Anyone that can communicate with me and offer sound advice would be greatly appreciated. I am sorry if I posted in where i shouldn't have but I am at work and people are walking by me and I am trying to be discreet and couldn't wait until I got home tonight. Thank you very much.

Sincerely,

Kev

[guyincog]

freakingout,

We all know how you are feeling.  It's terrible and it's not something any of us can really do to comfort you other than to just tell you that you WILL be ok in time.  It might take a long time but just wake up every day saying 'there are people out there like me, going through this thing too, and they are dealing with it, so can I'.

First off, get to a doctor you can trust - a good urologist.  If you don't have pain that is great.  The gold standard on this site seems to be pentox, and in some cases using a VED to stetch things out.  The biggest thing is to make sure you talk with a doctor so you know one way or the other what's going on.

Second off, don't freak out.  The penis does not heal like a normal part of the body.  You're not going to see overnight improvement or anything like that.  The main thing is to realize your life is NOT over and that there are many other people out there who went through the emotions you're going through and came out the other side being OK with things.  It just takes a ton of time.

Third, I know this may not be the right place to say it, but you are going through a really difficult period.  This is going to be an emotional rollercoaster.  None of us can say 'snap out of it' and make you feel ok.  Get help, talk to people, confront it.    Stay active, keep healthy - if you freak out and pull inside and stop doing stuff it's just going to make you feel even worse.  

This is as emotional and psychological an injury as it is a physical one.  Try to keep positive thoughts in your head.  You will get through this.  

[Hawk]

Your doctor said do not go on the internet, get used to it , there is nothing you can do.  All bad advice.  he is correct that there are many sites selling snake oil to desperate victims.  He is correct that random internet chat won't do much for you and he is correct that there is no "cure" as such.

This is what there is:
This site that was carefully developed by patients for patients.  The men here have experience.  Many of us have seen and communicated with top experts in Peyronies Disease.  Many of us have been treated by doctors with every know Peyronies Disease treatment from surgery to oral medications, injections, and devices like traction and VED's.  In fact there are doctors here that have Peyronies Disease.  All of us have fought the psychological battle and many have come out strong and intact.  Many of us are in relationships that lasted through this and many are in relationships that started after Peyronies Disease.

This site sells nothing, and gets no support from anyone that does sell anything so no one here wants your money

There are many things proven to help through clinical trials. We know what those things are.

To start with, be calm.  understand you have to patiently educate yourself and weigh options.  You will have to understand your options to decide what approaches are best for you based on access, cost, and time commitment.

Here is a good list of reasonable options.  Some of this will make no sense right now.  That is where the self education comes in. We will help.

No rough sex, healthy life-style (no smoking, good sleep, minimize stress)
VED, traction, PAV coctail,
Supplements like Acetyl L-carnitine, CO Q10, Alpha Lipoic Acid
warm soaks or heat lamp.

Almost every one of these things can be damaging if used to excess so learn before you rush.
_______________________________________

Now it would be good to know a few things like:
Age?
What did your medical doctor conclude?
How long have you had symptoms?
What are your symptoms?
What treatments have you tried and what were the results?
Do you have insurance or means to get treatment?
where are you in dealing with the psychological aspects of Peyronies Disease?
Are you in a relationship?

Regards
Hawk
PS: What did you mean when you said "the site is very confusing." ?

[Norm]

Settle down, man. It is not good news, certainly, but it is not the end of the world either. All of us here have had that same horrible realization when we looked down and saw our best friend pointing off in another direction. Mine takes a hard 70 degree left dogleg, quite a shock the first time you see it! My Uro was not as gloom and doom as yours, but he did not offer much hope. If you want some hope you came to the right place. The guys on this forum are very supportive and helpful. And there are more than a few success stories. Hang in there. Spend your spare time reading this forum. Evaluate all the different approaches you find here. Pick one and go with it. We will all offer opinions, but no one here is going to try and sell you anything. The most consistent advice you will find here is to be proactive. Don't wait two years like I did. Get started now. Good luck. Be patient. And be an active part of this group of friends.  

[james1947]

freakingout

You have stated that you have lost 2&1/2". It means you had Peyronies for relatively long time.
How long time ago you begin to see your penis bending?
How the doctor diagnosed you? He made an ultrasound and physical examination?
Regarding your sentence:

....site is very confusing

You have different boards for different subjects and then topics that are specific to one thing or general in a subject.
For example the board in a specific subject:
Oral Treatments for Peyronie's Disease - PDS - Peyronies Society Forums
and then a topic dedicated to:
PENTOX - Side effects - Peyronies Society Forums
You may find also some posts on a subject that are related to other things because are somehow connected to the subject.
The moderators are (very rarely) splitting some topics if they gone completely out of the subject. Don't have censorship on the forum, everyone can express his view free and as Hawk stated this site is of Peyronies sufferers supporting each other.
Regarding treatment I will write bellow what I am doing, daily. I also lost 2&1/2" to Peyronies, get back 1/2" by now. Started treatment very late, I mean almost three years after the onset.
2*400mg Pentox – morning/evening  (3*400mg is better, I have too many side effects)
4mg Cialis (cutting the 20mg in 5pcs) – evening (5mg not available where I am living now)
2*500mg Acetyl L-Cartinine – morning/evening (some taking 1500mg or 2000mg daily)
2*1000mg L-Arginine – morning/evening
2*100mg Ubiquinol – morning/evening (some taking 3*100mg daily, younger people can replace with CoQ10, but you are 50 so you should use Ubiquinol)
VED, 20 minutes
You can expect improvements after six months or more, some people have faster improvement. Consistency is the key of this treatment.
You can read the board to understand each treatment component benefit

Welcome to the forum
James