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Other Peyronies Disease Discussion Boards => Psychological Component - Seeking and discussing solutions => Topic started by: Jack1909 on September 26, 2018, 11:49:49 AM

Title: Don’t know what do anymore
Post by: Jack1909 on September 26, 2018, 11:49:49 AM
Guys it's been a while, I'm writing as I've not been thinking straight for a while. Actually I'm pretty confused.

Everybody got some insight into my story and how this summer I tried to force things showing up at the wake forest university. Unfortunately things went bad and I wasn't even given any L hope or something. Because of this I split up with my GF as both we can't tolerate this thing no more. Anyway we still like each other.

My sleep is so poor (also on medications) that I get tired just doing anything. Anyway, I enrolled in an university course and I'm trying to keep up with the lessons. It's more than the excruciating given the absence of sleep combined to pain.

Anger and anxiety got me caught some diseases often related to a prolonged unbalanced mental status: after tinnitus I got Vitiligo. It's not a joke.  Because of this all I had to get back to my parents whose I'm involuntarily tied up. And I'm 28.

I still don't know how I got this far starting from a congenital curvature, which means an healthy penis. I can't find any solution to my problem and I started to think about penis transplant....
Even implant looks to not be indicated for my unique case.

Don't know what do as I tried everything to improve my condition but all I got has been slipping down from one problem to another one. Waiting is not an option anymore, I just want to set up things in order to have a family in the near future. If I can't, well my life is meaningless.

Title: Re: Don’t know what do anymore
Post by: diehardpatriot on September 26, 2018, 12:59:31 PM
When do you get pain, how often do you get pain, and where do you get pain?
Title: Re: Don’t know what do anymore
Post by: Jack1909 on September 26, 2018, 01:18:11 PM
I have different pains:

The pain from the stitch remained from the 2012 surgery, on the left side but very close to the neurovascular bundle, which reminds a lot when you got a testicle crunched\squeezed. In fact, when it's at its highest it makes me feel breathless or feel like vomiting. I think it comes from the crunching of the nerve. This pain is not dependant on the use I do of my penis

The other pains are basically triggered if I try to masturbate or use it, like if there is burning surface underneath the skin ready to flares up.

Those things combined make me think that implant would just possibly get them worse, and in general, would give me a penis usable just in theory.

The fact is that my sexual activity is zero since 2012..and the pain looks like it last forever.
Title: Re: Don’t know what do anymore
Post by: lessor on September 26, 2018, 01:31:05 PM
Hey jack is not possible to get removed that stitch by a surgeon or something like that?

Title: Re: Don’t know what do anymore
Post by: Jack1909 on September 26, 2018, 01:54:40 PM
Kuehhas failed on it; terlecki told me he can basically remove everything even the whole penis if he wants...yes, nice answer wasn't it??

The point is removing it without making more damage. The ideal thing would be a treatment capable of reducing it in size in order to make the alla thing more feasible. But the ideal treatment lies in not yet available treatments hands.

It looks like everything is messed up and unclear, also when it comes to ED: how is possible to have severe ED to the extent I have not seeing my penis fully erected for years and coming from a night in which I had multiple spontaneous erections. Just becauase I took a miserable dose of 5mg cialis. Sometimes I think I'm not really impotent I just have physical obstruction to complete erection (the stitch).

I'm very confused and so are doctors.
Title: Re: Don’t know what do anymore
Post by: lessor on September 26, 2018, 02:26:29 PM
But that stitch was placed by a surgeon so if a surgeon placed it, it should be possible remove it, i dont undertand why Kuehas failed.  And about telecki what a crap of answer.. this doctors dont understzsnd the hard is this for us wtf
Title: Re: Don’t know what do anymore
Post by: Jack1909 on September 27, 2018, 06:51:51 AM
Yeah it was placed by a surgeon but it triggered a huge fibrotic reaction in the surrounding area, blending into the other tissues. It's so big than it looks like a sharp metal object. So thats why is so tricky remove it.
Title: Re: Don’t know what do anymore
Post by: skunkworks on September 27, 2018, 09:08:21 AM
Quote from: Jack1909 on September 26, 2018, 01:54:40 PMterlecki told me he can basically remove everything even the whole penis if he wants

What a scumbag.
Title: Re: Don’t know what do anymore
Post by: diehardpatriot on September 27, 2018, 02:16:47 PM
I really don't understand why these doctors aren't giving you a solution. For the guy that said he can remove the whole things. F~@< that guy.. some people are literally scum of the earth. Anyway, I'm guessing that stitch is a permanent suture from a plicatiom surgery ? I don't understand why he cannot remove it, or even just excise that whole area and place a graft over it, if you get ed then an implant can solve that. At this point I am sure you just want to be void of the horrible pain, then have a dick you can at least use even if it's implanted. I give you props for dealing with pain for 6 years. You are extremely tough. Geesh. My advice is to get in touch with American doctors if you haven't already
Title: Re: Don’t know what do anymore
Post by: PJC80 on September 28, 2018, 03:44:33 AM
Hey jack sorry to hear that your struggle continues.your story is both horrendous and inspiring for the fact that your still fighting after all this time.have you looked into targeted high speed vibration therapy?it's a bit left field but it's supposed to break up fibrous tissue at certain frequencies.it could be possible to minimize the fibrous tissue enough to go back in and get rid of that stitch.you could even add castor oil,serrapeptase and anything you can think of to throw at it.I hope things turn around for you soon.
Title: Re: Don’t know what do anymore
Post by: Jack1909 on September 28, 2018, 04:54:54 AM
Hi, PJC80..I never heard about it, do you have any link or something would give me some insight into the matter please??


Diehardpatriot, the problem is that everybody is scared of making more damage, given a condition in which basically the neuropathic disorder is at its maximum. That's why in the past I was already discouraged when I asked for an implant.

To keep the crap updated, despite taking a sleep pill, I slept 2 hours and that made me miss the class I was supposed to have from 8am to 2pm....If I had a job I would have already got fired...
That's ridiculous.
Title: Re: Don’t know what do anymore
Post by: PJC80 on September 29, 2018, 04:09:07 AM
Hey jack I found a link.if you scroll down to just under half way you'll see pictures of a soccer players arm and that's where the definitive information will be.
https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2258238/&ved=2ahUKEwjXrrzF_t7dAhUFdt4KHf9ABXwQFjAAegQIBBAB&usg=AOvVaw0djZO168sovBHNqT6OgkAH
Title: Re: Don’t know what do anymore
Post by: diehardpatriot on September 29, 2018, 11:38:06 AM
Is the neuropathic disorder caused by simply too many surgeries? Or is it caused my constant pressure on the nerves due to scarring? How can they ever heal if there's plaque pushing on hem? This needs to be addressed
Title: Re: Don’t know what do anymore
Post by: DELETED on October 01, 2018, 02:01:41 PM
Quote from: Jack1909 on September 26, 2018, 11:49:49 AM
I can't find any solution to my problem and I started to think about penis transplant....

Sorry if this is a stupid question but do you think it would be possible in case of Peyronies Disease? I've had a conversation with Dr.Van der Merwe (he performed first successfull penile transplantation in 2014 in South Africa) and his reply was like "It's not available for anyone who have own penis". In other words, he's able to perform transplantation only for patient without penis. I don't know what opinion have Dr.Cetrulo about this (surgeon who performed first penile transplantation in USA in 2016).

Quote from: Jack1909 on September 26, 2018, 01:54:40 PM
terlecki told me he can basically remove everything even the whole penis if he wants...yes, nice answer wasn't it??

He said this exactly in that sense?! He didn't mention about Wake Forest's penile transplantation trials?
Title: Re: Don’t know what do anymore
Post by: Jack1909 on October 09, 2018, 06:13:44 AM
I know it's not even in the realm of possible, Alex...it was just a definition of how much I'm desperate.


He did say that, he tried to be funny but obviously it's not the kind of thing you want to listen  after traveling 5000 km. He said I'm not fit for them but im the fittest available instead. I have basically an object inside so I'm not at risk of devolving any plaque...In fact I don't have any. The problem is limited around an area that it will be roughly 2 cm..
So I'm super fit. The point is I'm not a veteran and that's all. No matter if he didn't say it straight.

That's the problem guys, I don't have Peyronies Disease, even if I have many of your symptoms. That's why I'm not respondent at any of the treatments you might be..
Title: Re: Don’t know what do anymore
Post by: diehardpatriot on October 09, 2018, 02:27:42 PM
So you don't feel any hard tissue ?
Title: Re: Don’t know what do anymore
Post by: Jack1909 on October 09, 2018, 04:03:11 PM
Expect for the stitch area, which is hard as f....yes, no hardnesses. I mean, yes, some diffuse fibrosis but nothing really palpable