My history/ status

[Mike_1024]

Age - 49

Age at onset of Peyronies Disease - 47

Very First Symptoms -
Very slight bend to the left of just my head.  I wasn't even sure if it was real or if I was imagining it.  No idea what caused it.

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes -
I was due for a routine physical anyway, so I asked my primary about the bend (I already suspected Peyronies Disease...thanks, Dr. Google). He agreed with my suspicion and recommended a urologist.  I guess the uro wasn't all that concerned because of how minor the symptoms were...little to no pain, no plaque that I could feel, no curvature, just one small bend at the head.  Be gave me a prescription for pentox and said come back in 4 months.   4 months later, the symptoms were gone.  The pentox ran out long before I noticed any changes. So I never went back.

6 months after that, all hell broke loose with my penis.  I don't know for sure what started it. I suspect I had one round of sex where I got much more aroused than usual.  But since then, no particular event has preceeded each step of progression, so I don't know.  But I started to notice a burning sensation in the flesh of my penis when I got aroused.  Not when I peed.  Not like a urinary tract infection, this was in the flesh itself.  Itchy, burning.  I gave it a day or two to go away but by then I noticed a dent on my left side, and the pain became very local to the dent. I could feel the plaque.  From there, things went crazy.  In a month or two, I had a huge dent, a 40 degree bend to the left, plenty of pain.  Then I got another dent on my right side, more pain.  The pain subsided in a couple months, but then I started with an upward bend, close to the base.  More pain, more plaques.

Throughout this second bout, I was looking for information on the internet and I quickly became aware that there didn't seem to be much that could be done, as far as medications were concerned.  I started doing my own stretching by hand.  I assumed (right or wrong) that the next treatment would either be xiaflex (not promising enough to be of interest to me) or surgery (definitely a last resort for me).  I decided to wait until things stopped progressing to see a urologist.

Where I am today, future plans -

So, today, two years after this nightmare started, I have strong elections (although, because of the dents/hinges I have three distinct sections:  the bottom section bends 40 degrees up, the middle section bends 40 degrees left, and the top section,  God bless it, seems ok, but points up and left, thanks to the other sections).  The pain has mostly subsided except for just as I reach orgasm.  Penetrative sex with my wife is practically impossible because of the hinging, but it is do-able.  It just doesn't seem to be worth the hassle.  

I'm depressed, frustrated, feeling rather hopeless, jealous of every normal guy out there, missing any confidence I used to have.  I'm not a big dude...really skinny actually.  My above average equipment was the one thing I had that I felt I had going for me, physically.  Now that's ruined.  I know I am more than my anatomy.  I can talk myself out of my poor attitude.  I'm extremely grateful that this is not life-threatening.  But it is absolutely life-altering.  I'm afraid I haven't adjusted well yet.  I'm finally at the point where I can start reaching out for support (and here I am on this forum).  My biggest hope is for a stem cell treatment.  I don't have unlimited money, time, or energy to pursue treatments that amount to snake oil.  I'm afraid to get surgery because I could see myself having another flare-up come along and undo whatever good the surgery does.  Same with xiaflex (not to mention the 15% chance that it would even help me, and the 100% chance that it would drain my savings).  It sounds like traction has the biggest bang for the buck and the fewest downsides.  I'd like to get to a urologist but I don't know a good one in my area who specializes in Peyronies Disease.   So...yeah...I'm frustrated and I'm kinda just starting to really deal with this.

Thanks for reading through this!
Mike

[Mikel7]

Welcome Mike to the forum! I am assuming that you have read the survival guide --> https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . This is a must for everyone here. I know that peyronies is life altering but you have to get down on yourself. The fact that you are here shows that you will get through this! All of us have experienced these kind of bad thoughts as reality sets in about our penises. With time and hope and a plan of action you will make it through this!  I know finding a peyronies specialist is difficult but being evaluated ny one would be helpful.

Also getting your wife involved with this is a big relief too!  My wife has been a big help to me since I got this over a year ago. She encourages me and tells me that we are going to get through this! This is not the end but it has opened up a door of possibilities and creativity in the bedroom.

I would suggest that you look into starting traction as it will not hurt you if done correctly. I use the PMP and also have the Restorex too.  I mainly have been using the PMP for a little over 9 months now and have seen some progress in restoring my lost length and curvature improvement.  I also use the supplements listed and heat therapy too.

Don't let your mind wander into the what if's.  Try to believe that this is just a "bump"  in the road that will pass with time. It is so much easier to let bad thoughts control our thinking - but don't go there!  Read the forum and get some hope for things to get better!  After I got peyronies it was only 6 weeks after that I had sudden hearing loss with tinnitus and hyperacusis and  talk about devastated!!  But I had to make a decisive choice that my life is not over yet and good things are going to happen to me.  My best to you!1    Mikel7

[Mike_1024]

Thanks for the reply!  I wasn't sure if I should post that here or under "introduce yourself".  Or somewhere else. I don't want to make things difficult for others to find.  I'm actually not sure I'm supposed to be replying in here at all.  I have more to reply to you but until I figure out where I should put it, I'll hold off.  Your thoughts are much appreciated though!  

[Mikel7]

Usually it is customary for new members to post their first post in the "introduce yourself" .  Maybe Hawk or one of the moderators could do that for you.  It is not a law though for you to post there. It just keeps the forum clean and organized.   Mikel7

[Mike_1024]

Thank you, Stabler, for the help moving my post!

[Lostandsad]

Welcome to the forums, sorry that you're going through this.

One of the members here, Monty, seem to have quite a bit of success with VED and manual traction. His penis is pretty damn straight now. I think you should be able to see it in the pictures section of "Progress Of Peyronies Disease". I hope your wife is supportive through all this. That would mentally help you out a ton.

I wish you the best of luck in beating this.  

[Mike_1024]

Thanks, Lost.  I've spent a fair amount of time in here the last two days (almost 4.5 hours, according to the counter at the top of my screen).  I've noticed that traction/VED seems to have some success with very little chance of making things worse.  I'm pretty sure I'll end up going that route at some point.  I'd like to talk to a urologist first, so that's one hurdle.  Getting the nerve to order such a device without feeling like a pervert is another hurdle.  Haha

My wife and I have a decent relationship but these kinds of things are difficult for us to discuss.  She works in a healthcare setting and tends to deal with diseases and disabilities in a very clinical, dispassionate manner.  So that's one thing.  I have a hard time being vulnerable at that deep level, so I've got my own hangups.  So when things are good, we're really good.  When things go wrong, it can be tough to navigate.  She knows what's going on with me.  We haven't talked about it too much though.  I won't have any problem with getting her input on how to approach this, medically.  But the emotional side is hard for me to expose to her.  I'd honestly rather talk to other guys about it.  We both come from really dysfunctional families, so talking frankly about sex has always been difficult for us.  Like I said, when things are good, we're really good.  When things go wrong, it gets tough to navigate.  Lots of room for improvement.  

[Mikel7]

My wife and I have a decent relationship but these kinds of things are difficult for us to discuss.  She works in a healthcare setting and tends to deal with diseases and disabilities in a very clinical, dispassionate manner.  So that's one thing.  I have a hard time being vulnerable at that deep level, so I've got my own hangups.

I can definitely relate!  My wife also has worked 30 years in healthcare and deals with patients everyday. When
I first bought the PMP I also felt like a weirdo and would not let my wife see me .it on.  I then took a big step for me and let her watch me put it on and it was an ice breaker. After that when I purchased my VED tubes I let her watch me perform the therapy on myself and that also put my mind at ease. After that I am now more at ease with things - it's a mindset.  You will make it through this!