Is there even research being done for a CURE?

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popopo

Hello, been away for a looong time cause I never read anything new or interesting here. Seems like medival treatments like stretching devices, a penis pump and pentox (which i've been taking on and off for years now without actually noticing any effects) are still the "best" options out there. So with that said.. are there even new developments for treatments/cures for peyronies disease, errctile dysfunction, scar tissue in general or even penis enlargement that might be usefull for us? More and more I feel like the forum hasn't changed in years and there might never really be something for us. I'm 24 now and got this at 17 and I feel like I'm wasting my life waiting for a day that will never come.
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

DELETED

popopo,

If you haven't read the forum for the last couple of months, you need to know that a lot of people here found a "cure" in IPP. I'm not agree with this point, but what can we do? If "the best" option in almost 2019 is to going to the surgery of implantation of silicone inflatable tubes, which was firstly performed almost half-century ago. Time is running out, but nothing is changes.

Gabriel

Hey popopo,

Welcome back :-)!

Just so you know, some of us seem to be experiencing great improvements with keto diets (see recent topics)... That may be worth a try for a few weeks/months ;-)!

- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

james1947

Welcome back Popopo :)
Proposing you to checkout deeply the newly organized ED forum, especially the implant subject

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

JS1991

Stem cells (expensive and not perfected) and fasting are your best bets in my opinion.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

ruff

Quote from: JS1991 on December 06, 2018, 05:58:20 PM
Stem cells (expensive and not perfected) and fasting are your best bets in my opinion.
Ive done both, havent helped so far. 1 month out for stem cells so maybe takes more time
Age: Late 20's
Date of Onset: 2014
Symptoms: Down and left curve 60+ degrees
Treatment: Plication surgery with Levine in 2022 after failed stem cell, traction, shockwave, and other treatments.
Current Status: Now straight. Here to help.

Hontas


suicidecomingsoon

Currently there is no cure and the current stem cells are a scam and besides that you will spend thousands of dollars for nothing

Stabler

While there is no cure at this point I do think it is progress that there are now TV and Radio commercials about Peyronies Disease, at lease not you can see it is being addressed.

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

JS1991

Quotethe current stem cells are a scam

Woah, pump the brakes; very dramatic. My penis grew and the tissue has smoothed out, I would hardly call that a scam... actually I would call it what I've been calling it, which is a treatment that is too expensive, yet can have good effect for some. If it cost $1000 I would urge everyone to get it now, but unfortunately it's closer to $10000. You're positive as always I see, lol.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

Jack1909

The cure is tissue replacement...

The funny thing is even just cadaveric tissue might work. Why no one even investigated tunica transplantation? Some study suggest it might work and it might open up to some kind of penile tissue bank...

Oh, of course, The fact the cure does exist doesn't mean it will be available.
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

Michiganguy19

Peyronies Disease December 2015.
Caused by Reactive Arthritis, November 2015.
Length before erect: 7.2in
Girth before erect: 6.5in? Just a guess. Was 5.9 after loosing girth/having hourglass and first measuring.
Length erect. 6.2in
Girth erect: 4.1

Whyisthishappening

the only thing that completely cured people in this forum besides surgery and xiaflex is water fasting ,and two guys one with amino acids and  another one with sycamore tree leaf tea and bee pollen.
I would like to propose something here but do not know how to do it
can we start a journal club or something in this forum trying to find in a more organized manner some answers
hontas  recently gave some answers about a gene
 also i don't know what's going on with birchbiomed fs2 ,we can forget mediwound's compound for the immediate future and also if you go to scleroderma news you can read about a compound based on cannabis
alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

DELETED

Quote from: Whyisthishappening on January 25, 2019, 04:22:11 PM
the only thing that completely cured people in this forum besides surgery and xiaflex is water fasting

Are you serious?

suicidecomingsoon

Quote from: Whyisthishappening on January 25, 2019, 04:22:11 PM
the only thing that completely cured people in this forum besides surgery and xiaflex is WATER FASTING ,
Hahahaha sometimes this forum is so funny

Jack1909

Getting back with some news in a little time, I am setting up a non profit project for tissue engineering in the treatment of peyronies and Erectile Dysfunction. I do believe together we can make a change. The technology is already here it s just about applying it, crowdfunding is the way. A marginal problem oriented company as Foregen has gathered half a million so far for reversing circumcision..

Waiting for WakeForest will kill us, we can take the process over and wash it away from any business purpose.

The only thing it takes is the willingness to do it and crowdfunding is the only chance we have to get around the hypocrisy of the medical community we deal with. We are already studying the best place to set up the facility and the research groups we need to turn to.

I hope you will contribute guys
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

Sounds like a plan to me. I'm not rich by any means, but if others chime in I might donate as well. We gotta start somewhere, right?
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

Whyisthishappening

alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Hontas

Jack1909

PM me and lets do this. Actually, this could be used for finding out what its cause is as well; to prevent it from happening again.

Jack1909

Popo no one needs to be rich, I'm not. That's the power of crowdfunding, it takes just a little contribution to get to staggering amounts of money.

I'm trying to be online for the end of the month, the overall purpose is about tissue engineering for both Peyronies and common aging Erectile Dysfunction, which allows us to open up to bigger numbers in terms of people who might be interested in.

I'm trying to do the things in the most scientific and correct way, I'm involving people in the field and I'm considering to involve universities as well. I can't discard any option at this time.

I think it's worth a shot as I'm super convinced that the technology for curing most of us is already here.  
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

skunkworks

Quote from: AlexSamo on January 26, 2019, 04:37:00 PM
Are you serious?

I have had substantial results from fasting. Not commenting on the rest of his post, just that particular snippet.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Hontas

Funding for a cure in genetics also could be a nice addition, since genetic engineering is 100 times more advanced than it used to be, the real cure lies within genetic modification etc...

popopo

I think it depends. For some it's caused by genetic predisposition, others an injury or even lifestyle choices like smoking or being overweight. But any knowledge that could help us is appreciated.
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

Hontas

I am fairly certain it is about my immune system attacking myself

popopo

I'm not sure I have the same thing. I do have had sharp pains, an unnaturally blue or sometimes unusually pale appearance and progression of loss of girth/shape/size. This happens even now after years of getting injured. Then again, maybe if I never injured it by jelqing in the first place none of it would have happened. My case is at least partially because of jelqing.
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

Whyisthishappening

hontas is right,finding the cause is very important
alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Hontas

You have to think about what is causing it and pinpoint it so that you can find a cure. That is what doctors fail to realize.

NeoV

I've said it before, but the day heart disease and cancer are "cured" is the day Peyronie's will be. Interestingly, both are now known to be caused by energy dysregulation, primarily carbs, with a dash of genes that make us susceptible.

I do think that protocols for prevention and treatment will improve along with awareness however. If I knew about how Peyronie's worked at a young age, I feel that I could have prevented nearly 100% of my symptoms. Imagine that?

Bubba dawg

I dont think there will be a cure for cancer, heart disease or peyrones anytime soon .  Maybe 1000 years from now. Just too many factors as to why people get these diseases . Treatments will continue to improve. Just think Xiaflex did not exist 5 years ago. Not exactly sure when it was approved. So some drug companies are working on better treatments. I think you are looking at Star trek days before human will be disease free. That is if life survives that long.  
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Jack1909

Tissue engineering is a treatment, not a cure..a cure would mean reversing the damage induced on tissues and it's far more complex.

That's why we should expect big things from it. A surgery in which traditional grafts are replaced with healthy tissue is pretty close to me and it will be a game changer for many of us. Or at least a huge improvement .  
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

Hontas

No an actual cure would mean that the underlying mechanisms that worsen this disease or activate this disease are neutralized. Effectively making your wound healing process the same with another normal person, that is the cure. Tissue engineering is already here so we should pursue that immediately.

Do you guys' disease actually ever stop worsening in the long run? Really surprises me to be honest.

JS1991

I'm slowly curing myself with fasting. After 7 weeks several points of inflammation on my penis are no longer tender to the touch and now actually difficult to find, I've nearly filled in a dent that I had, nearly cured hard flaccid, etc. Check the water fasting thread in the alternative treatments subforum for more. Science backs it as well as other members of the forum who have had similar results. Believe me or don't; I offer my knowledge, do what you want with it. I'm at the point where my inflammation is so low that I'm debating incorporating traction and VED again in order to restore dimensions and increase penis size on top of the incredible autophagy benefits of fasting. My prediction is that aggressive dry fasting + physical therapies will be the protocol that defeats this disease in the end. It's essentially reversing the damage + regenerating + adjusting overall size to the extent you want with physical therapies.

QuoteEffectively making your wound healing process the same with another normal person, that is the cure.

That is literally exactly what I am doing.

So to answer the overall question: Is there even research being done for a CURE? Yes, I've been doing that exact research for the past year, as well as self-experimentation, with success, and it continues to this day. Check the water fasting thread for before and after pics of my dent filling in. At this point, my main concern has shifted from "will I ever be cured?" to "how quickly can I do this and gain my full, unrestrained sex life back?".
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

DELETED

Jack1909,

Maybe we create a chat in some messenger and give to the people the opportunity to join and help you with your project?

DELETED

Jack1909,

Your PM box is full, please delete some messages.

As for our talk in PM: Tomorrow I'll send you all of the articles and studies and I ask you to create a group chat in Telegram, can you do it tomorrow? I will join immediately and I'll ask other guys to join as well. Thanks.

Michiganguy19

You guys really think not eating is going to cure this? What happens after you eat again? Giving your body no nourishment doesn't seem healthy to me

Quote from: JS1991
link=topic=11166.msg106813#msg106813 date=1549500669

I'm slowly curing myself with fasting.

Peyronies Disease December 2015.
Caused by Reactive Arthritis, November 2015.
Length before erect: 7.2in
Girth before erect: 6.5in? Just a guess. Was 5.9 after loosing girth/having hourglass and first measuring.
Length erect. 6.2in
Girth erect: 4.1

popopo

They're talking about intermittent fasting where you consume the same or just slightly less food just in a "feeding window". For example, I do this as well and eat only between like 4/5 in the afternoon until 8/9 in the evening, then I don't eat and just drink water and coffee in the next like 20 hours. I believe it works for getting leaner and if you keep eating well you shouldn't lose strength or muscle either. I also don't think it will heal my peyronies and haven't noticed anything really in that regard, but I do know intermittent fasting or even fasting a whole day once in a while has health benefits and you can look it up the science is there. It's not the cure some people make it out to be (in my short experience so far) but an overall healthy lifestyle (with or without fasting) can only help I think.
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

Whyisthishappening

popopo how long are you on IF any Peyronies Disease related benefit?  i was for 4 months ,then cause f work OMAD for seven weeks and now i am for a month on IF again,saw a slight improvement Peyronies Disease related but mostly genral wellness  was far better,thats why i am thinking fasting and tried hard dry fast for 20 hours my goal is to try 5 days of hard dry fasting
alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

skunkworks

@Michiganguy19 The science on why fasting could help with this condition has been posted in multiple threads here. That + the reported experiences of trusted members here with a lot of experience with this condition, should be enough for you to at least consider the idea that it might be helpful.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Bubba dawg

I have not seen any reports of fasting causing a dick to lose its curve or bend.  
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

popopo

I've been fasting for a couple of weeks now with a few cheat days inbetween. Combined with exercise it helps me get leaner, but so far my penis is still getting worse no matter what I do it seems. I just try to stay healthy and hope for the best.
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

skunkworks

What was the longest single stretch of zero calorie popopo?
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

popopo

20 hours, I do intermittent fasting so I still eat daily.
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

Michiganguy19

Everything is a waste of time. Nothing works. Just the honest truth.
Peyronies Disease December 2015.
Caused by Reactive Arthritis, November 2015.
Length before erect: 7.2in
Girth before erect: 6.5in? Just a guess. Was 5.9 after loosing girth/having hourglass and first measuring.
Length erect. 6.2in
Girth erect: 4.1

skunkworks

@popopo, intermittent fasting did absolutely nothing for me with regards to my Peyronie's. It was only when I started doing 2-4 days of zero calories that I saw improvement, dents filling in etc.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Michiganguy19

Quote from: skunkworks on February 17, 2019, 11:03:46 PM
@popopo, intermittent fasting did absolutely nothing for me with regards to my Peyronie's. It was only when I started doing 2-4 days of zero calories that I saw improvement, dents filling in etc.

What happened when you started eating food again? I don't understand how to do this. I'm already sickly underweight from being so depressed.
Peyronies Disease December 2015.
Caused by Reactive Arthritis, November 2015.
Length before erect: 7.2in
Girth before erect: 6.5in? Just a guess. Was 5.9 after loosing girth/having hourglass and first measuring.
Length erect. 6.2in
Girth erect: 4.1

popopo

It's important that you make up for the fasting periods not to lose to much weight. I eat in 2/4 hours what I normally would eat in a day, so I think if you would go for a whole day of fasting you'll have to eat for two days in the day before if you don't want to get weak and lose muscle.
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