What I once was

[restore]

When I think about how my erect penis looked and felt before this disease, I get very down.  Always had a very uniform, straight, hard, weighty erection.  Now what firmness is very spotty, being pliable and floppy at the end.  It bends easily at the indents and I'm not the same man wanting to take my woman with reckless abandon.  I now approach her precariously, and we do our lovemaking with great focus and care to make sure I don't, or she doesn't, hurt me any more than I've already suffered.  I don't look forward to sex, it's more of a chore than a delight.

Sorry so negative, my mood for now.  

[MikeSmith0]

I totally understand and relate 100%.  This disease is something that only rapists deserve, and it has ruined a big part of my life.  The best psychologists I know don't even have much to say beyond "that really sucks" and "don't let it consume you". Yep... easy...  

[restore]

thanks Mike, man I wouldn't wish this on anyone.  But something in me tells me the future is hopeful for us, just wish it would happen sooner.  I'm glad this disease is rare, but that's the very thing that keeps the research so slow.  Think we would have more promising therapies now if it was more widespread (which we DONT want!).

[chefcasey]

I think hope is all we can have to keep us going.  The thing that scares me is thinking down the road.  I'm 27 now, what will it be like when I'm 28?29? 35?...Will my quality of life be permanantly reduced for the rest of my life?  Will I ever have my confidence back?  Will I ever be able to live life without thinking "how is this or that going to affect My Peyronies Disease?"  Will I ever just accept my deformed penis?  Will I ever truly not get freaked out by looking at it?  Am I going to be stacking all these meds and supplements, pumping, and extending my penis everyday for the rest of my life?  What, when, and where is the endgame?

I still have pictures of my old dick that I used to send to an ex girlfriend of mine who lived far away.  When I looked at them a few days ago, I couldn't believe how far I've deteriorated since then.  I was thinking of getting rid of them just because it hurts to see what I once was, but then again, if I ever do start improving it would be nice to have something to compare with.

One can try to take this disease day by day, but trying to fight it everyday is just so frustrating and you get fatigued.  Some days I and I'm sure the rest of us just feel like shutting down.  I know I and the rest of you guys did nothing to deserve something like this.  Whatever mistakes we've made in life, we've paid for it and then some with this disease.  That being said, I think we're overdue for some good luck, hang in there guys.

[MikeSmith0]

I think hope is all we can have to keep us going.  The thing that scares me is thinking down the road.  I'm 27 now, what will it be like when I'm 28?29? 35?...Will my quality of life be permanantly reduced for the rest of my life?  Will I ever have my confidence back?  Will I ever be able to live life without thinking "how is this or that going to affect My Peyronies Disease?"  Will I ever just accept my deformed penis?  Will I ever truly not get freaked out by looking at it?  Am I going to be stacking all these meds and supplements, pumping, and extending my penis everyday for the rest of my life?  What, when, and where is the endgame?

Yeah I have exactly the same concerns... I am in my early 30s.  I remember a month where I took 20 pills a day - just to try to do anything... and nothing happened... except my stomach was a mess.   I can't do that for life.  Plus the worrying what will affect it, etc... I totally undertstand that.

I still have pictures of my old dick that I used to send to an ex girlfriend of mine who lived far away.  When I looked at them a few days ago, I couldn't believe how far I've deteriorated since then.  I was thinking of getting rid of them just because it hurts to see what I once was, but then again, if I ever do start improving it would be nice to have something to compare with.

Ha - I have this too - some from when I was really young (taken on a polaroid!) in college... my dick looked HUGE!  I can't even believe that was me.  Then it actually was smaller in my late 20s but still fine... now it looks like something is seriously wrong.  I look at it as the goal end-state...but maybe that's too unrealistic

One can try to take this disease day by day, but trying to fight it everyday is just so frustrating and you get fatigued.  Some days I and I'm sure the rest of us just feel like shutting down.  I know I and the rest of you guys did nothing to deserve something like this.  Whatever mistakes we've made in life, we've paid for it and then some with this disease.  That being said, I think we're overdue for some good luck, hang in there guys.

I'm convinced i was a rapist in a past life. That is the only sense I can make out of it.

[Skjaldborg]

Quote from U.S. Army Captain D.J. Skelton regarding an injury that cost him his eye, destroyed the roof of his mouth and shattered his left arm in Fallujah, Iraq in 2004.

'I can either dwell on what happened and be miserable and pissy and complain or I can look at what I do have left and figure out how to make the most of my new life... how to make what I have work while always looking for creative ways to make up the difference.'

He chose to remain on active duty and will redeploy with the 2nd Stryker Cavalry in Afghanistan soon.

This is the attitude that we need to have to overcome this disease. Look at what you have left and figure out how to make the most of your new life. Don't back down. Keep trying new things. Get surgery if you need it if all else fails.

Forget "what I once was" and start working with what you are now.

-Skjald

[chefcasey]

skjald-

That's very inspirational.  I've always think I could have been strickened with something worse like being paralyzed, lou gherigs disease, penile cancer, terminal cancer or a whole host of other terrible things.  It's always the ailment that we have which we think is the worst.

I think most of us could get our mind around it if it weren't for the fact that men are hardwired for sex, there's just no way around it.  When a wrench like this get's thrown in the mix, it's incredibly hard to fight natural sexual instinct.  It's also different from other things in that you don't have to be ashamed of a lost arm or leg, people accept and understand it, but try explaining to someone(especially a woman) that "I have this rare condition where my penis is filled up with scar tissue from some sort of sexual trauma, and as a result, it's crooked, bent, and shrinking".  I have a couple times, and I'm never surprised that while they appear to be sympathetic, there's always a little smirk or chuckle when they hear about, even from my own family.  I don't mean to bitch or complain, but this forum is all we have sometimes to vent, because no one else understands.

[Brightdog]

I read the original post on this thread and I thought "Oh, yes. You speak for many." When my Peyronies Disease was at its worst and I was having trouble getting any action on it, I finally blew up and went to my doctor and told him I was making the Peyronies Disease my "hill to die on". There was so much ugly stuff in my life, and I felt the Peyronies Disease was something I should be able to change. And I hadn't realized how much it was bothering me until I talked to him and the tears welled up - tears of anger, frustration, pain.

Now I am post-surgery and doing many of the things the rest of you are doing: VED, traction. Being careful about sex. I am ready to resume sexual activity, but my wife is nervous about her own ability (she is older than I am and post-menopausal) and the truth is she is more than a little weirded out about the surgery etc. Mourning the loss of what I had and trying to learn how to be happy with what I have left. And, yes, it's difficult. Some days, when I'm spending another boring 15 minutes in my bathroom using the VED, I think "Is this what my life is about now?" Of course it isn't - not totally - but I have to do what I can for my health. And as far as I can see, I will have to keep doing it until I give up on sex altogether.

What choice do we have?

And there are more of us than we know. All those men who have Peyronies Disease but are afraid to have it checked out. Men who are avoiding intimacy because they are afraid of being laughed at, or afraid they won't be able to please their partner the way they want.

I am clawing my way back, slowly. At least I can still have an erection without pain - which I couldn't before. The feeling is just coming back now, after surgery last July. I have gained something like an inch since the surgery (I lost almost 3") and at least I look okay flaccid. I am worried about hard pieces I can feel - but I cannot tell if they are part of the graft, if they are pieces of the plaque that was cut, or if they are a new development. I hate having to spend so much time thinking about my penis.  

[Woodman]

brightdog- Are you saying that post surgery you have to use the VED and or traction indefinitely?

[Brightdog]

Woodman, I do not know how long I will have to use them for. I know at least a year is indicated.

From what I have read, a predisposition to Peyronie's does not go away. My Peyronies Disease was the result of trauma - and it built slowly. Well, I have had more trauma (ie the surgery) and my guess is that I will have to cycle through the therapies to make sure the Peyronies Disease does not return or is manageable. So I might not have to be on VED/traction forever, but I expect I will have to use them for the first year and then get to take a break for a few months and then go back for a cycle etc.

BD