Hello,

I am 39 y old and suffer from Peyronies Disease all my live. Just now, I'm recovering from my 2nd Nesbit operation last Tuesday.
I got my 1st Nesbit operation in 1993 totally by change as I had an emergency operation in 1990 where I lost my right testicle (age 18). Nobody told me at the time that Nesbit was an typical and last resort procedure for Peyronies Disease next to congenital curvature (first diagnosis in 1992).
I discovered myself in early puberty that something was abnormal but I found nobody to talk to about it. I found myself standing with my back against the wall since my early teens.

Got me quite messed up this condition. Brought me to an total social isolation and poverty. Rejected and emotionally destroyed by my family since childhood because I could never perform as they expected.

I am from Belgium and would like to find members from Western Europe to share experiences or to meet IRL. I searched for years for information on penis deformity and possible causes. Didn't even know that this is an actual condition till some months ago when I discovered this forum when doing deep searches with my symptoms.

So please, if you are from Western Europe, contact me. I do speak Dutch, French, German and English quite well.

I will post my personal full story later on.

Quote from: Clyde1972 on November 12, 2011, 09:58:43 PM
Hello,

I am 39 y old and suffer from Peyronies Disease all my live. Just now, I'm recovering from my 2nd Nesbit operation last Tuesday.
I got my 1st Nesbit operation in 1993 totally by change as I had an emergency operation in 1990 where I lost my right testicle (age 18). Nobody told me at the time that Nesbit was an typical and last resort procedure for Peyronies Disease next to congenital curvature (first diagnosis in 1992).
I discovered myself in early puberty that something was abnormal but I found nobody to talk to about it. I found myself standing with my back against the wall since my early teens.

Got me quite messed up this condition. Brought me to an total social isolation and poverty. Rejected and emotionally destroyed by my family since childhood because I could never perform as they expected.

I am from Belgium and would like to find members from Western Europe to share experiences or to meet IRL. I searched for years for information on penis deformity and possible causes. Didn't even know that this is an actual condition till some months ago when I discovered this forum when doing deep searches with my symptoms.

So please, if you are from Western Europe, contact me. I do speak Dutch, French, German and English quite well.

I will post my personal full story later on.

It is possible to have peyronie at 13 years old?
Are you perfectly sure that you don't have congenital curvature?

He does say that he was diagnosed with congenital curvature.  

If you are willing to travel to the UK I can suggest a Uro.  Feel free to PM me.

Not sure if you can have actual Peyronies disease as an early teen. I will meet my Uro next Monday and ask his opinion on that. As I said, I always had an abnormal curvature as from early puberty and was allready operated for it. So I have the same question.

The Uro back in 1992 diagnosed it as congenital curvature, but as I said, I met up with this Uro by change given the emergency operation for Tortio testes in 1990. I do not know whether this Uro was familiar with Peyronies Disease.

Even the actual Uro - an expert penile surgeon - who recently operated me thought initially that it was still congenital but badly corrected in 1993. Reading through his medical report (to my generalist) he states that he had to remove old scar tissue. When discharged from hospital recently I asked him how the operation went and he said to me that he discovered old scar tissue unexpectedly once my penis was degloved while operating and that he had to remove this scar tissue.

I am quite confused. Had Nesbit done back in 1993 as presumed to be congenital, abnormal curvature came back showing a real bent. In August an September I visited 2 Belgian Uro professors who both thought it was congenital and both suggested new Nesbit procedure. I had the new operation on November 9Th. As the recent report states removal of old scar tissue I guess it was also the result of Peyronies Disease in early 1992. If that was the case I must have had Peyronies Disease since puberty or maybe longer as I was circumcised for medical reasons as a child. Peyronies Disease is caused by abnormal scarring due to micro-trauma. Even surgery causes micro-trauma as they cut while operating. I wasn't sexual active before 1994.
Will discuss on that with the follow up consult next Monday. I sincerely hope it is not Peyronies Disease but not sure for the time being. I knock on wood.

Only thing I can say is that you have to search for an experienced Uro surgeon with Peyronies Disease knowledge. Mine is an expert in penile surgery. Other thing I can say. First consult several and think twice before you have Nesbit. It is really painfull, both physical and emotionally. I did hardly sleep for 12 nights in a row since the recent operation.

I know of a Peyronies Disease specialist in London and a Peyronies Disease specialist in Brussels, hence the professor I went to see in August. As I did not want to take any chance I also directly went for an 2ND opinion with an expert penile surgeon closer to home who diagnosed the same. I probably also know Peyronies Disease specialists in Paris where former prof Lariche developed a new Peyronies Disease treatment technique called Lariche technique.

Hope my experiences will help.