29yo - my story

[StayingPositive]

Well, I've been lurking here since I discovered this terrible condition and I figured it was time to actually start posting and contribute to this community. Here's my background...

I'm 29 years old and live in the Northeast US... I was diagnosed with Peyronie's in late March, but I believe the very first symptoms started in September of 2011. Last year, my fiance decided to call off our wedding and end our relationship... needless to say, I was pretty devastated (if only I knew what was to follow). I think my Peyronie's journey started about 5 months later during my first post-breakup sexual encounter. The girl involved and I were both pretty drunk and I went for round 2 with less of an erection than I should have... big mistake looking back, but I didn't even know injury from that was possible at the time. I vaguely remember her coming down a little too hard on my semi-flaccid penis, but didn't think much of it at the time. A few days later the pain with erection started. My first thought was STDs, so I googled as much information as I could find and came up with nothing. Must have just been a little too rough, I figured. I still hadn't stumbled across Peyronie's in my search (probably because I had no curve so I just ignored it) but the painful erections persisted for a few months. Nothing too bad or even remotely unbearable, and it wasn't constant either. It was pretty much going away when one night in March, I clearly injured myself with a new girl I had been dating. We were just going at it a little too hard, I popped out and I jammed my penis against her pelvis (ouch). Very painful, but I didn't lose erection and didn't hear a pop, so we finished. Even then, everything seemed relatively normal until about two weeks later when I suddenly woke up one morning with a huge hard swollen band about a 1/4 inch under my glands. I freaked. Ever since then, my life has pretty much been hell. Googled the hell out of my symptoms and self-diagnosed Peyronie's. The first Uro confirmed that in 2 minutes, shrugged it off like no big deal (even though I had ED already at this point), and gave me the wait and see approach (actually prescribed 2000IU of Vitamin E... good thing I looked into that before taking it!!). Made an appointment with Dr. Metro in Philadelphia (as I had seen his name mentioned on this forum) and Dr. Muhall in NYC was too long of a wait. In the meantime, started on Acetyl-L-Carnitine, Ubiquinol, Vitamin E & L-Arginine. Saw Dr. Metro in mid April (whom I would highly recommend based on his very positive and caring attitude towards the condition... he gave me a lot more than the 5 minutes I got from the first hack Dr.) then prescribed me Pentox & low dose Cialis. That's when I got some erection function back and noticed the curve(s). From the base, I point very much to the right (although I remember this happening on occasion before this all started so I wonder if I was born with that or have been dealing with this a lot longer than originally thought) followed by a weak "hinge" also on the right that I worry about causing potential buckling during sex (something I have not tried since I discovered the plaque) and up towards the glans I have a slight curve to the left. All in all, I bet I would be able to have sex based on my curve, I'm just very scared of making it worse.

I know I haven't been on Pentox (or really anything) long enough to really see any improvement yet and the pain is bearable... so my plan is to start on single cylinder VED within the next few weeks as a test run to see if I should get a prescription for a 3 cylinder device upon my six month follow up with Dr. Metro. This disease sucks so much and changes so frequently in the acute phase that I can't really tell if I'm making progress, getting worse, or staying the same. I'm otherwise healthy and relatively young, so I just keep staying the treatment course and really really having a lot of hope things will improve. I've come to terms with the fact that sex will most likely never be quite the same as it once was, but I'd really not like Peyronie's to completely ruin my life. It's been said many times on the forum, but being young and single with this condition is a terrible punishment... ladies in their mid 30s and up definitely have different sexual expectations from their partners than younger women do. And guys who are in a relationship (of any age)... treat those women like gold because as bad as it might be dealing with this as a couple... it's a million times worse as a single man. My biggest advice I'm seeking right now is how to successfully bring this up to anyone whom you are dating, as I'd like Peyronie's not to kill my dating life and hopes of finding someone special.

Thanks for listening! Stay positive!

[james1947]

stayingpositive82

You are here already so welcome to the forum.
I would like to say that you are doing the right thing because the biggest chances to stop the Peyronies progress or even revers the symptoms are in the acute stage.

I don't agree with you regarding:

I've come to terms with the fact that sex will most likely never be quite the same as it once was

as nothing is not final in life except one thing.
Regarding having sex, my private opinion is not to stop. Other forum members may disagree, but for me is a very important thing, just have to be more carefull and I can't have a full erection.

Hope the treatment will help you and you will be back where you was before this disease

Best wishes
James

[reynell]

Welcome to the forum

I agree with james, being so young you need to stay positive by staying active. I am worried about your mental state as much as your physical state. If you give up with sex you've already put one foot in for failure

I know it must be very difficult for you at your age. Stay positive and part of that is enjoying your relationships.
Hang in there

[PablitoNJ]

I stopped because of the pain and embarassment. After starting up again, I realize that it would have been better to keep at it, even if just occasionally. As reynell has said - remain positive. And as james has said - be careful. My two cents - communicate and talk about it with your partner.  

[StayingPositive]

Thanks for the responses guys! I guess I should have been more clear that I haven't been avoiding sex soley because of this disease... the girl I was seeing and I broke up before I even got a real diagnosis. I am actually dating someone new, and although I do have some understandable anxiety about bringing this up... I'm thinking it's going to be discussed in the very near future (because we are starting to get increasingly physical). I'll admit I'm a little nervous because it will be not only the first time having any kind of sexual relationship since the plaques appeared, but also because it will be the first time having to tell a potential partner about this. But, in a really weird way I can also look at Peyronie's and be grateful because in the past I probably would have jumped into bed with her a lot sooner... and that isn't in general who I really want to be anymore. Looking at the positive side of this disease as a single man (if there is such a way to do that), having Peyronie's has definitely given me a new appreciation for sexual contact as far as it being something shared between two people who care about each other and not quite as casual as it sometimes had been for me in the past... not that there's anything wrong with that either... I just took the act of sex for granted before having Peyronie's.

[james1947]

I suppose most of us

took the act of sex for granted before having Peyronies

stayingpositive82, happy to see that you stay positive with this disease. It was devastating for some of us.
Wish you all the best regarding your new GF.

James