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popopo

So it's the summer of 2017. I'm actually surprised I'm still around and haven't gone insane yet, but damn..... how much F^@$!ng longer will it take before someone can finally cure us? I check the forum everyday and in the last 5 years no new treatments have been introduced it seems. Are there no updates? No new treatments wih stem cells, tissue engineering, etc etc.? I also never hear snything about Atala anymore.. I thiught he was close.. I hope these researches are still going and maybe someone knows more.
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

lessor

What was the last thing that we know about athala and penis?¿

popopo

He can regenerate penile tissue. Only problem is that we cant know how long it will take before it's available to any of us...  
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

lessor

I see he can regenerate an ear or vagina, but wit penis and it funcionality, i mean tiny veins and arteries, tunica albuginea, muscle, How he will can?
It seems very very diffivult, more than other organs or body´s parts

Someone talk to him ? how long? What did he say about the penis?

Jack1909

He can do it as everyone's penis shaft is much longer than the outward appendix so basically he can take all the cells he needs just taking them out with an needle..then he expands and harvests them until it's all ready to be implanted.  
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

lessor

i understand thank you
But that was the last thing he said? When was the last time anyone talked to him?

popopo

Supposedly he was gonna start human trials in the summer of 2016. It probably didnt happen so soon, but maybe he's doing it now. I do know that the military supports him and he is doing trials with veterans who have genital injuries. I think we will hear more in the next 5 years because I cannot imagine them giving up on this moe that they came so far.
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

Pretty sure he can already cure all of us but he is still not allowed to. The only chance of being cured i can think about is being proposed to move to Mexico and have all the things done down there.  
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

Jack1909

Besides, I do believe that many of us would not neee such an invasive procedure but just an handful of well done injections.  
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

lessor

but is it possible to talk with him for mail or anything? So we could know how is all going

Jack1909

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

NeoV

The moment they cure or effectively treat diabetes or cancer with a drug is the moment they cure Peyronie's with a drug. It's simply too systemic to be cured with any single treatment, at least for quite some time. For me personally, I've targeted my blood sugar, and lowering myostatin (a kind of tgf-b) with creatine and other supplements + diet. Peyronie's seems to suffer from multiple biases or problems that prevent it from being treated or discussed, but I do wish something like that cream would be developed. I have a bad feeling we will continue to have to take things, and our penises, into our own hands for decades to come.

lessor

if athala can do to grow penis in the future, if i get an implant , Could athala regenerate my cavernous bodies?

Jack1909

Well, in that case Neo, I'm going to kill myself. I would accept a life taking treatment if it makes me feel good, improving my erections,  but what I would not..is an implant. Something coming from the dark ages and based on the absurd concept of getting back people to sex life knocking down their penis forever.

I think no one is expecting a cream...just something that gives you new healthy tissue and that's what regenerative medicine is all about (look at the stem cells presentation at the London urological conference held lately). I understand many of you are concerned with all the plaques you have to cope with but a new option for people who are just suffering from erectyle disfunction would be a great advancement. And it would affects peyronies as well. Because any progress would pass trough a fibrosis reduction..
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

This is so depressing. I feel the aame way jack1909.... I hope it will be worth the wait............. I cannot die right now, but I'm also past the point where I can accept this crap. Too much happened in the last years. I'm slowly accepting my faith.
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

lessor

this process is hard, very very hard really, but i am sure we in one way or another will find a solution. Do not lose hope

NeoV

I didn't mean to be negative there, sorry. I am quite sure that in time there will be more options, even if it's on the genetic level. Of course I am excited about any type of regenerative medicine.
I just meant that, we should think harder, research better, and take the burden ourselves to learn more and figure out more about how to combat the disease here and now.  

suicidecomingsoon

It does not seem like a solution is going to be offered soon by atala for our problem, I have fibrosis in the corpus cavernosa, according to some doctors diffuse others do not see anything. What I want to say is that, pretending that I do more than suicide, I need a solution now in my 20, I could wait until my 30 but not more of the 40. I want a solution in that period, where I can enjoy sex and not when I'm 60, with 60 my youth is over, i want to enjoy my youth or my early adult (35-40)
Atala's promises do not seem to arrive even in the next 10 or maybe 20 years, when they begin to test with human subjects in the army they will have passed more than ten years from now at least. I mean my life is going on in those 10 or 20 years !! No later

Jack1909

Quote from: NeoV on June 12, 2017, 08:09:28 AM
I didn't mean to be negative there, sorry. I am quite sure that in time there will be more options, even if it's on the genetic level. Of course I am excited about any type of regenerative medicine.
I just meant that, we should think harder, research better, and take the burden ourselves to learn more and figure out more about how to combat the disease here and now.

I know it..but, I mean, I've never had the chance to have a pleasant intercourse in my life and I'm about to turn 27. I was operated more than once (getting worse), I travelled around Europe for 2 years (I went in Paris twice, London four times, Wien twice) seeking for just a compromise. I started from a severe curvature and I came to a severe curvature, severe pain and ED. Sometimes is just not possible to find some balance....I know I'm not the only one..
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

Our lives are going on in the next year too suicidecomingsoon. We're all in this and we all want the same and that's a solution one way or another. I'm 22 so what you said about not wanting to be too old I can relate too as well, but these human trials are probably already happening behind the scenes. Another forum I read said 2019 (phallo boards, not gonna post a link here) but other sources said summer of 2016 so we just don't know.. I think if I was a doctor and had knowledge and technology to do something like that I would probably first research everything and THEN come out to the press. I think it's only common sense that his team doesn't inform us about the progress, but that doesn't mean nothing is happening. But yes, there is a chance HE personally isn't the one to help you and me in the upcomming years, but the fact that someone is researching it means others are as well.. It might take a couple of years, but it would be a joke if suddenly research would not continue even though it could help a lot of people and make a lot of money. In the meantime we can't do nothing but improve other aspects of our life or keep trying with treatments that are available now.
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

lessor

You guys how much longer would you be willing to wait for it, you have an age thought in which you would wait no more?

By the way jack i sent you a pm, but your box is full

Jack1909

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

Tychy

Afaik, stem cell treatments are still in the cancer inducing or doing nothing era. I would bet on enzyme treatments or similar. There was a link around somewhere of a biotech company testing a formula for scar reduction. Stem cells is just a long way to go, because they tend to go out of control or morph into the wrong cells (think: hairs growing out of strange places  ;D )

Jack1909

Cancer inducing era? I don't know what time you are coming from...
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

Are you sure Tychy? I read an article where the study said it didnt increase the risk of cancer. Maybe there are studies that say the opposite, but I think nobody knows for sure. Of course stem cells are still in the expirimental phase, but who knows? Maybe one day it can actually work. I don't really care who are what is gonna cure us, just hope it will be sooner rather than later.

To lessor, I don't have a maximum age. I just try to keep going and hope everything will be okay in the end.
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

Tychy

You seem to be right. I reviewed updates and it seems to be working in recent studies. However, take it with a grain of salt, as failures are often not made public and results are overblown for funding (that saying as a researcher myself).

Cryogenically freezing ulimbical cord blood of your newborn is actually a good practice, as it takes away the omnipotent stem cell ethical issues and opens the door to potential future treatments.

Have an article:
https://hms.harvard.edu/news/staving-stem-cell-cancer-risk
Quote
"The spectrum of tissues at risk for transformation when harboring a p53 mutation includes many of those that we would like to target for repair with regenerative medicine using human pluripotent stem cells," said Eggan
...
However, Eggan and McCarroll emphasized that now that this phenomenon has been found, inexpensive gene-sequencing tests will allow researchers to identify and remove from the production line cell cultures with concerning mutations that might prove dangerous after transplantation.

treeza1

I emailed Wake Forrest a few weeks ago and got a response this morning;

Hello;

I am a Peyronie's disease sufferer and was wondering where your research is at in relation to this specific disease. From what I can gather from information online your regenerative medicine team do have a focus on penile tissue along with many others. Do you know if and when human trials will commence and whether it will assist Peyronie's disease sufferers.

Thank you for reading and I look forward to your response.

---------------------------------------------------------

Good afternoon,

We will be recruiting for a clinical trial in the near future using engineered corporal tissue to treat injured corporal tissue inclusive of some Peyronie's disease.   The study will be recruiting in Winston-Salem, NC in the fall.


Jack1909

That sounds great! I m thinking of going there in person and discuss if I am eligible for that or what I am supposed to do in keeping with my peculiar condition..
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

lessor

whats the meaning of near future..? I hate that, it could be 10 years  :(  I wwanna know when those trial will be starting, they could say surely in 5 years and it would be better

treeza1

Lessor the fall is a season beginning in September in North Carolina

lessor

Quote from: treeza1 on June 15, 2017, 03:51:51 AM
Lessor the fall is a season beginning in September in North Carolina
¿

treeza1

The study will be recruiting in Winston-Salem, NC in the fall.

lessor

ok thanks sir, my apologies for not understanding before

popopo

That's great I knew it. Believe me this is a good sign... Last time I mailed them they couldn't provide me any info about when and where. The fact that they tell us this must mean it's really going to happen this time because half a year ago they didnt want to say anything specific because it wasn't sure.  
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

james1947

From Treeza1:
Quote...the fall is a season beginning in September in North Carolina
Hm... And I was thinking (maybe because I am not so good in geography) that fall starts in September in all the north hemisphere :(

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

DELETED

Quote from: treeza1 on June 15, 2017, 04:09:10 AM
The study will be recruiting in Winston-Salem, NC in the fall.
This is a good news. But, there is still many questions for Wake Forest staff, like: is this would be a partial or a full replacement of cavernous tissue for patients from test group? What they will do with tunica? Will they cut part of old tunica and replace it with new growed tunica? And how long will take this trials? 5 years? 10? 15? Or more?

Can you guys send mails with all of your questions about this option to Wake Forest staff? We must show them that there are a lot of people who need cure, for stimulate their commercial interests and speed up this whole process as much as possible.

P.S. For sceptical guys. Yes I know, the situation on this field is horrable and very slow, but let's just  leave alone 1% of hope that lives inside us.

DELETED

Any news&updates for laboratory grown penises clinical trials? Guys, please, send your inquiries to Wake Forest, we must let them know that there are a lot of people who need this treatment.

Also, here's a link about current trials in Wake Forest, I suppose it's just a transplantation, but anyway: https://clinicaltrials.gov/ct2/show/NCT03240822

pey ron

Quote from: Jack1909 on June 11, 2017, 07:20:01 AMmove to Mexico and have all the things done down there

What can they do in Mexico? I'd go there...

Quote from: NeoV on June 11, 2017, 10:36:49 PMlowering myostatin (a kind of tgf-b) with creatine and other supplements + diet

Can you please tell us more about this?
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
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beentheredonethat

sh*t son id donate 20 grand to hurry it up. anything to make this misery end. i havnt been on here in 6 or so months.. seems like the same shite. trick is keep urself busy fellas. try not to think about it

DELETED

Quote from: Jack1909 on June 11, 2017, 07:20:01 AM
The only chance of being cured i can think about is being proposed to move to Mexico and have all the things done down there.

Quote from: pey ron on October 03, 2017, 10:00:42 PM
What can they do in Mexico? I'd go there.

So what was you talking about, Jack1909?

Btw, any updates at all?

suicidecomingsoon

Ten years will pass and this crap will remain the same ..

Jack1909

Quote from: suicidecomingsoon on May 10, 2018, 07:58:42 AM
Ten years will pass and this crap will remain the same ..

Don't think so  
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

tiagofil

I think effective treatments will only be available for next generations. From what I learned CCH was first researched in the 80's and only became available  in 2010 as Xiaflex first for Dupuyren and then later for Peyronie. So it's more than a 25 year gap from first research to availability as a treatment.

And probably new treatments will only be effective in the acute phase, those that have already a chronic disease are forever in limbo, unless some revolutionary surgery appears which I don't believe will happen anytime soon.

DELETED

Jack1909,

Can you finally say what did you meant by saying this?
QuoteThe only chance of being cured i can think about is being proposed to move to Mexico and have all the things done down there.

tiagofil,
QuoteFrom what I learned CCH was first researched in the 80's and only became available  in 2010 as Xiaflex first for Dupuyren and then later for Peyronie. So it's more than a 25 year gap from first research to availability as a treatment.

Atala's project of lab-grown penile tissue is also started more than 25 years ago. But they only planning to start first human trials in this year. How many years will it take? Another 25 years for trials and approvements?

In other words it's over for us...

DELETED

Jack1909,

Will you answer about what did you meant? We're still waiting.

Jack1909

Some years ago some people on the forum were offered to have some regenerative treatments in Mexico and they accepted. The treatment was performed by some wake forest doctors or maybe by other located down there, but still on their behalf. I don't know. Btw To make a long story short, apparently they did improve. Still remember one saying he was able to get an erection again after years of impotence.  
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

DELETED

Jack1909,

That's very interesting... I never seen this. I wonder why there's no thread about this? What kind of treatment it was? If you know more, please let us know. Thanks.

hope794

Really motivating. Has anyone got news about this?
What about the people who tried the treatment? How do you know they got better?
26 yo from Italy.
Peyronie's since abt 2014
Abt 20-25° bend, w/ a moderate twist to the left
ED for 4 years and getting worse
From pornstar-like to moderately depressed - still fighting for a solution.

DELETED

Jack1909,

I'm asking you to write what you know. It's may be helpful for all of us. Any information would be appreciated.

Jack1909

I already told you what I know
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