Don't know what to do anymore

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Jack1909


I'm writing because tomorrow I'm gonna turn 26. 26 means 10 years from the moment I've started to worry about my congenital curvature..you probably already know about my story: it's so peculiar that it spread speedy on the forum. Till 2012 I was good even if I could not have intercourse due to the curvature. By that time I already have had one "serious" surgery attempted and failed, but I was good. No pain, no bad feelings..and no sex. In 2012 I went through an authentic butcher and from my life became impossible. You know I tried to fix what It could fixed having a surgery with kuehhas..now I'm almost two years away from that.

I was repeated many times my condition is unique, something like a fake peyronies provoked by a big fibrous stitch..but the surgery was a failure. Ok, I achieved something, but not enough to survive. I never asked perfection, just not pain and a straight penis. Incredibly, I almost had what it looked impossible to me: feeling it not so bad by touching and getting rid of all the crap I had inside, excepting the big stitch.

Anyway, the deformity is still there and the pain increased. I think the nerve regeneration started after the damage I had in 2012, went wrong..so I have recurrent pain around the stitch and a feeling like stabs all over the left side of the shaft.

The point is I don't know what to do anymore but I can't go on this way. Having sex or having a girlfriend is not my priority anymore! I just want to have pain relief in order to start over to build my terrible life. I forced myself to finish my studies and I am about to graduate: I'm putting all the commitment to find new things to do or to think about..but pain just doesn't want to leave me.

Yesterday I went to the club, I did not feel like going but a friend of mine who lives in London was in town so I forced myself to go..after a while a I had to leave because of the pain.. When I was driving home it was even more clear that I'm not a free man anymore.

I tried drugs painkillers everything but I think I'll never get rid of pain if I don't get rid of the stitch. The stitch is pushing on nerves and maybe it's involved in failed nerve regeneration. Kuehhas told me to try to remove it again, but he did not gave me guarantees
I don't know what to do. I was about to get in touch with Atala thank to a contact I had, but it was not possible. I thought to go to wake forest university without getting in touch with anyone..it would be a desperate try, but I don't have so much left.

31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe ED after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

popopo

Hey man, I'm sorry you have to go trough all of this. It sucks to hear that there is in fact no cure and I think you're not the only one that's worse off aftef surgery.

I think for now all you can do is give it rest and hopefully the pain is manageable with painkillers and will eventually fade.

I think it will be very hard to find a doctor who can give you the help you need because it's just impossible to cure for now. I really thinknyou should try and contact dr atala, because he might be the first to be able to help you.

If you actually get the chance to talk to him, please tell me. Like you I also believe he's the one to cure us but I can't get into contact with him. He doesn't reply to mail and I really have no other option since I'm here in Holland.

Be well and keep us updated.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Jack1909

I had a solid contact, dr. Cinzia Marchese. She said she would have exposed my case to him in a stem cell meeting and she told me if I was available to go in US to be examinated. Of course, I was. But she suddenly disappeared and I could not contact her anymore, via mail nor phone. My father is a doctor and after a first positive contact could not go on..

Having just a chat would be useful, something to grab and hold on...

I'm gonna fly in us in October and chain myself around a post outside the building if necessary..I don't have nothing to lose, I can't go on this way..too pain and drugs do not help.  
31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe ED after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

popopo

Hey, I totally get your frustration. I don't have as much pain as you I think, but over time the stinging hasnt gone and I also barely have a penis left.. I wish you the best of luck, but are you SURE dr.Atala has the cure allready? I also never heard anything about the study he was supposed to be doing this summer. I read that he wanted to try penile transplantations on humans using lab grown penises. If he's capable of doing that, he will be able to help us. But since I haven't heard anything yet, I'm not so sure. Do you have any more information?
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help