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popopo

For me personally nothing works. Have been and probably will be in active phase for what feels like forever, but is actually a couple of years. My dick slowly starts to look like a hanging piece of skin and it probably gets worse till it resembles a micro penis. I cannot date, cannot get laid, cannot publicly shower and don't have the drive focus or motivation for anything else. Is there anything I can expect in the next couple of years? Stem cells, new drugs/treatments, new surgery?? Anything?? Don't tell my I should do VED, traction or implant. Been there done that. None of these can give me back my size and function and I'm not gonna discuss this and the reason I say this is because I had people tell me "Implant implant implant!!" before but its NOT the golden bullet some people think it is or like to tell you. I guess I don't even know what I'm looking for right now. I don't feel like anything is helping me anyway. I still hope for future treatments, but I think if I wait for that I might be 90 when I finally can F~@< again.
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

popopo

Let me just add that life is trash right now, doctors are trash and apart from this forum NOBODY CARES! I wish I could say people do, but they don't. Peyronies or erectile dysfunction is not a priority for doctors and probably never will be. To everybody saying there are these wonderfull amazing treatments and you can beat this disease if you just do it yourself. WAKE UP! yes, this forum has been active, but literally NOTHING changed since like 20 years ago and I would know cause I'vr been here for a while. You CAN help yourself in some cases, but you have to be very lucky I guess and I haven't been lucky 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

Patientxyz1992

Man there is potentional future treatmants but will they hot the market, i have serious doubts in my lifetime, i would seriously take a good look at penile venous stripping surgery if your erectile dysfunction is severe enough and you have money to do it, i readed a lot of medical papers on the internet of that dr geng long hsu and i seriously dount that he is lying, heck i saw multiple times anatomy of penis and it seems that most complete anatomy of penis ever pictured is one made by him, i also saw an article in which he preformed surgery on cadevers and after surgery it took much less artificialy pumped blood to reach erection hardness compared to preop, so i think that death people cannot lie, either way im with contact with one of his patients on FT and that patient done his surgery 9 years ago, he was f'~c<+d up before surgery but post op he is significatly improved erections, so i wouldsay that if you have enough money and you are desperate enough and your erectile capability is crappy  and you cannot have sex i would seriously take a good look at all of his medical papers even if somone says that venous surgwrys are abandond i cannot compare standard ligation with this kind of surgery its a lot more advanced and im not sure that it will cure you but i think it has potential to definetly improve situation with erections......other than that all of this are snake oil  sellers
29 years old with injury induced Peyronies Disease - 7 years ago
Straight erections but easy to lose and hard to fill with soft glans
No morning erections
been depressed but not anymore
The biggest problem with my Peyronies Disease is loss of sexual desire.

Godisreal

My friend. I feel exactly the same way about the part where you are disrespecting doctors and urologists. I have never been more afraid in my life, than the beginning of this rollercoaster from hell. Man, I've never been so pissed on and taken for granted like I have with these so called doctors... it's absolutely sick that you have to take matters into your own hands even tho we all had NO KNOWLEDGE whatsoever before we got injured. It's like a forgotten problem. Not even forgotten, but this disease and everything that comes with it is completely left behind. "Qualified" doctors can't help us, so who will? Nobody. That's the sick and true answer. I've been here for barely 2 months and my dick already looks like a half-empty tube of toothpaste.
Urologists tells me there's nothing wrong with me after I show them a picture of my erect dick bending 25-30 degrees upwards. They tell me "come back when it's preventing you from having sex and I will perform a surgery".
I'm afraid my future is completely shattered, and I don't even understand how... all I do is gather money and buy supplements to try and save my beloved dick that used to be a machine.
I can barely get a fkn erection. I'm falling apart, from the inside and out.
Yet there's something deep inside of me telling me not to give up hope.
there's gotta be a way man, there just have to be a way out of this nightmare
Hang in there my friend, for the sake of the potentially brighter future that is to come
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

Jack1909

That's the way it is. We could get together and create a line of action, but all you gave me has been support. I wasted 1.500 euros on a reality that has never been completed. The fact is many are just about complaining and nothing more. I went to London I forgot how many times, I went to Paris, to Wien and even to United States in person. I have been fooled around in each of the places I mentioned. Kuehhas, the high volume surgeon everybody fulls its mouth about in this forum, made me impotent, basically the only problem I didn't have before meeting him. He can't even explain why he made me impotent.

I made tons of tests and consultations and I get out of all the offices with the same old words: "It's about you, everything is fine." Isn't that ridiculous? Before getting the surgery in London I was already mentally troubling but I got erections. I could penetrate despite I felt nothing in most of my penis which was full of ears dogs, as they call the tunica rupture caused by stitches. Now, that I feel far better, sensation is back and i have been freed of those stitches so my overall relationship with my friend down there is far better...I'm impotent. And they say it's in my mind. Good feelings, high libido and all and it's in my mind.

The reality is they don't have a clue. They are still debating over venous leakage and they are doing so slow because basically they don't even care. They know we're are so desperate that we would go anyway, so what's the point. They know they can do whatever they want because of the intimacy of the problem: no one will step in and say out loud what they are doing.

I respect all in here but I think I'm the most entitled to say some things, I really worked my ass off to try to solve my condition, which was a mere congenital curvature in first place. Three straightening surgeries later I'm not respondent to any ED treatment and I was discarded as Implant candidate because I have a neurological disorder ongoing in my penis and my penis is big and that would mean a ridiculous life expectancy of the device (more pumping). I'm about to turn 30 and I'm alone, I tried to get laid many times that in my hometown everybody knows my condition (of course ive been mocked for this, put on chats and been sent vocals). I had a girlfriend, more than one, very patient and all but of course it has led to nothing.

Is there anybody who can say he tried to get it better more than me?
The only thing we can do is act together as a category, creating a reality, fundraising, managing a kind of ONLUS and paying people for making the right and fast research. But that's a full time job.  
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

Godisreal

Quite a story you got there Jack. Sorry to hear about your experiences. The sad truth is, like you said, nobody cares but the people in the forum.
The only thing worth doing is experimenting and trying things to try and correct your personal situation. That's all it is to it. I think the majority of us feel betrayed by the system.
I can promise you all one thing, I'm gonna get rich as a motherf*cker and when I am, I can promise you that I'm gonna kickstart the re-search on this poor excuse of a disease and show all those "educated" people what a bunch of troubled people can accomplish together.
One day, we will raise awareness of this disease, because there is indeed LOTS of research to be done. And that is a fact. There's a reason why this has been a known condition for the last 500 years but yet there's no legitimate cure.  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

kusher

My experience is similar to jack1909. Kuehhas surgery caused my penis to be impotent and I'm also left with non dissolvable sutures. No wonder the stage surgery is not used in usa and canada. No wonder!!
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as age, date of onset, symptoms, treatments tried, etc

Jack1909

Stage, Plication, Nesbit are just little more than names.  
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

TonySa

This is not a magic bullet but there is some research showing 50mg nightly viagra can improve erection quality over several months.  
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

kusher

jack, the VED wont do anything to you. I have been using medical grade ved and honestly it is waste of time. there are no studies supporting the use of ved. just animal models.b

the only thing am doing now is 100mg Viagra b4 sleeping, but still, since stage surgery the left side became dog toy instead of healthy tunica  
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as age, date of onset, symptoms, treatments tried, etc

Jack1909

I think the same, won't have any relevant result but I will give a try anyway. funny fact is like you it happens I have the right chamber perfectly working and the left one not, so I have - even if not complete - multiple nocturne erections (with NO pills). If I take pills I have quite strong ones but as soon as I start any stimulation, I get it lost right away, in a minute or 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

kusher

I'm actually heading to dr egydio in Brazil in few weeks for a comprehensive examination. I have a severe penile narrowing that is affecting the stability the rigidity of my erection. According to alot of specialists I went to, he is number 1 when it comes grafting surgery. I think that is what I need. I just need structural support on the narrowing part then viola i ready to use my tool. Good thing is now u can perform grafting surgery without touching the nuvascular bundle like in ( extra topical grafting by tom lue ) so just heading there to see what my options are  
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as age, date of onset, symptoms, treatments tried, etc

popopo

What could one expect from grafting? Would you regain lost size or erectile function? I just wish I could get my natural size, shape and function back. I'm done living with a dick thats inflammed, continually changing in size/shape and progressively getting less quality erections.
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

TDix

I have had grafting.  9 months in I am straight but still have a few issues.  I have a slight bulge on my left side, and still don't have my old rock hard erections.  I am glad I had it done however.  Way happier than the whole Xiaflex regimen, that caused me to fracture.  What I will say about this surgery is that you need to find a specialist that knows what they are doing.  I honestly believe that had I gone with my urologist who did my Xiaflex injections I would have had a totally different experience.  I regained all my length and actually gained girth.  I still have the feeling of rocks in my dick, if that's a way to describe it.  I will never be how I was prior to this condition, but the same can be said for a lot of things.  It's how you adapt, and work through life's struggles.  I hope I can shed any light on anything you want to know about grafting surgery, because I'm living through it
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Hontas

Everybody here, I had more or less the same experience, send your telegram nicknames to my PM and let's do what needs to be done. Jack1909, i have been missing but now i am going to come back. Godisreal you are not hallucinating and %100 right. Just join in, leave your emotions behind and lets act on it. No surgery no BS, no pussying out. Surgery is BS anyway, i have other plans in mind.

Jack1909

The point Tdix is for 1 like you who had a good outcome, there is another who had got his condition worsening from surgery. If it was a drug, and not a surgery, it would have never reached the market.

You are right, adapting is a big part and I do tell you I would be super happy if I could have intercourse using pills. It would be awesome.  
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

TDix

I agree Jack, it sometimes feels like I lucked out, but I will say Dr Yafi did not push surgery.  He even suggested I could continue with Xiaflex and guaranteed it wouldn't be like before.  It wasn't until he did my ultrasound that we talked over all the scenarios where we both agreed that due to the amount of scar and calcification that surgery was probably my best option.  I believe that makes a huge difference.  He gave me the choice, did not push anything, and we agreed on a course of action.  Even just straight plication would not have helped me he said due to the amount of scarring and hourglassing.  You need to find a doctor that does this.  Offer options and find the solution that fits you.  What worked for me may not work for someone else, due to many factors.  You may have less scarring, less calcification, no hourglassing, etc...just don't do something because someone else who sounds like they are like you did it.  Sit down, run the tests, and have a discussion with your doctor.  Map out a plan specific to your situation  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

popopo

I can't even find a good doctor to properly diagnose me. Let alone be able to advice me on what to do. All they know is I have pelvic floor tension, venous leak and what seems to be some formation of scar tissue, but fpr whatever reason the scar tissue wasn't visible on the doppler while they where able to "feel" the plaque with their hands while I was flaccid. To me it seems weird that they CAN find it with their hands when I point it out to the doctor, but the doppler showed nothibg except venous leak. I'll go back to this urologist and discuss it further but otherwise it seems I'll have to look outside of the netherlands. Then again, if another doctor outside the netherlands isn't able to help me either then I'd rather not spend time effort and money on going there. I recetly moved out and because I'm too depressed to hold down a job money is an issue for me and will be a bigger issue in the future so it's not like I don't wanna spend money on fixing this issue, I just don't want it to go to waste and end up more frustrated AND out of money. I'll just hope this dutch doctor will help me as much as he can and think this trough with me cause I wouldn't know what to do just from reading here. Seems like most options are hit and miss.  
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

Godisreal

I don't understand the concept with "always at risk" tho. I mean, okay, it's an auto-immune disease. That's what it's called. But since a lot of people exit the inflammation phase aka the inflammation completely disappears, they get cured. Right? While some people never seem to get out of it... or does the penis inflammation ever disappear among those who get "cured" or does it just hold a very low level throughout their life? I can't wrap my head around this...
An autoimmune disease can't be cured tho, right? It's very complex all this
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

popopo

Yeah, I don't really get it either. What confuses me even more is that traction and VED are part of the reason I got this "disease", but for many it is the way to treat it. In my experience it doesn't help, but for the next guy it does so I'm not sure why it differs so much from one person to the other.
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

Godisreal

I like how you wrote disease lol, it's a sick joke of a disease.
But I wanna correct my earlier statement in saying it's an auto-immune disease. I rather believe it's a some kind of auto-immune disorder. Like I said, for a lot of people, progression stops/inflammation completely disappears, therefore they are cured. They might be stuck with scar tissue but that's after all what the majority of us are working against.
There's gotta be a difference between patients that we are not seeing, it doesn't sit right in my head regarding some people never exiting active phase and some people get cured. It's still the same disease? But the outcome is different, whatever the treatment.  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

DELETED

"Hope, cope, rope". Not trying to insult anyone. Just stating things as it is without BS.

samsung

Sorry to digress here. Alex, I agree with you. But where is there to go from there? I agree hope is a delusion. I agree coping is b.s. But killing yourself or others is very difficult and ultimately also pointless. I would know. It leaves one stuck in an endless pit. Pretty much 100% of the people on this forum will have no idea what I'm talking about because they are alive. But I think you and possibly popopo and a few others get it. But there isn't anywhere to go with it. There has to be a way. And yet I realize there isn't. Rinse. Repeat.  
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Jack1909

Samsung, honestly speaking, no intention to disrespect, but you're symptoms popped up one year ago..some people have been waiting for more a decade and they saw their all youth taken apart. Just try to see things in perspective. You might understand some of us but I doubt we understand you. I don't myself.

ALex Samo I still dont know how your condition is.  
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

samsung

And no disrespect to you, but my entire life and youth and everything was taken apart in a vastly worse way than peyronie's so, you don't really need to comment. And this is not a contest. I could put you all to shame. Peyronie's is easy in comparison. Was talking to Alex anyway. Forget I said anything. Was directed at him. If he knows what I'm saying that is fine. If not, fine too. In fact, this needs no reply at all. Side issue.

Actually, everyone, just ignore this post from me. I don't want to start a flame war comparing pain. All pain is relative. And yes, I understand it is harder if you are younger. No disrespect intended toward anyone.  
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

melting

Transdermals(DMSO+X) bar none. Anything else doesn't get enough and directly to the site of the plaque.

Obviously if you're in the active phase and inflamed VED and traction can/will make things worse.
If your condition is stable VED and traction is additionally(+transdermals) the way to go. If these caused your Peyronies Disease then surely you overdid them in some way or form.
You can stretch and VED until your dick rips apart.. or do it with low intensity high time stretching the tissue. There's not many more non invasive options to modify the tissue than these 2.
I would recommend to use pure logic and solution focused actions and don't get crazy over emotions and thoughts related.

Yeah, doctors and medicine in the EU suck. Socialism sucks.
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

Godisreal

Big facts, melting. You're speaking from your brain and not from your heart.
When you win, you win forever. You just gotta do everything in your power and keep working for it. I have an inflamed peyronies dick and I'm not even 20 years of age. But again, I have a plan, and I will stick to it. What ever happens, happens.
I've learned that life should be treated more like a comedy than a drama, I will find happiness if I can just have a healthy and non-crippled dick. And I know I will get back there, one day.  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

popopo

At the time I injured myself jelqing and using a pump, but that was years ago when I was 16/17. After that when using VED of course I wasn't overpumping, I was trying to make it better, not worse. But like I said, if I try VED right now even low tension makes it worse. VED just doesn't seem to work for me and I don't really know what else could stop the progression. I'm already on pentox and have been for years, but it still seems to get worse not better. I guess some of us have to wait for better options and I'm trying to do that, but it takes a lot of patience.
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

melting

Healthy lifestyle (breath, posture, movements, air, no stress)
Bloodflow to your penis
Anti inflammatory environment in and around your penis
Anti inflammatory supplements and medications.(which in some form have to actually reach the site that is inflamed)

Once the inflamation is down you can add light(!) tissue modulation.

just my 2c
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

Godisreal

But Melting, is the positive outcome permanent? You wrote in your profile that "dmso and traction solved my peyronies". I highly believe that, but is your success temporary or permanent?
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

TonySa

It'd be great if you put in your signature the actual improvements you had.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

melting

I'm fully functional with no pain since some years now. The link in my signature explains it. Not sure how anything about it is ambiguous or unclear..
I guess and hope permanent..
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

TonySa

Try explain what solved means...pain eliminated, curve decrease from 40% to 20%, increase in length from 4 to 4.5", increase in girth from 3 to 3.5" for example.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Godisreal

The only thing that matters is that the person in question is no longer bothered by the affects of Peyronie's. That's enough for me to include a similar treatment in the future. It should be enough information for everybody else too. It's not magic, it's actual work and patience - which most of the sufferers won't commit to. The same ethic goes for the other treatments as well.
Melting, you're an inspiration to us. A genuine inspiration.  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

popopo

I hate to burst your bubble, but if dedication, putting in the work and patience was all that's needed I wouldn't be here. I would have increased my penis size with jelqing and pumping instead of injuring myself. Not trying to sound negative, but one treatment might work for some, not for others. As a matter of fact I can't even get out of active phase let alone recover the size I lost after months/years of inflammation. It's good to keep hoping, but in reality what we need is an actual treatment or cure instead of fooling around with traction and VED where results will vary from individual to individual and just plain doesn't work for some people or even make them worse. There's something seriously wrong with the way doctors treat this disease and people need to start to realize that. We keep getting the same advice over and over to try traction and VED, well guess what? These where available 20 years ago too, so in a way NOTHING has changed in over 20 years. Sorry for my rant, but I'm getting kinda desperate after all these years with false hope of a better future.
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

Godisreal

I understand your frustration, popopo. As you're saying, the results vary from person to person. That's often because their cause of the disease is different.
Let me tell you something.
Some people refuse to believe it's credibility, but those who injured themselves with jelqing and VED usage are imo very different from those who have many minor traumas + potential low testosterone and so on leading to disease. Same goes with those who have Peyronie's and insulin-instabilities in their genes. The treatment always seems to be different from one another. I'm not saying one case has more probability to solve than the others or that the different cases don't have similarities, but I am saying that one who has injured himself using VED or jelqing etc. probably won't find a solution with VED or such. It doesn't take a genius to figure that out. I'm no doctor, but if I had to guess - I'd say your problem revolves more with the corpora cavernosa's ability to expand, you might have f*cked up its ability to expand properly with all the jelqing you said you've done. The deep arteries leading to the two corpus cavernosa's might have been severely damaged in your case after heavy over-pumping and jelqing, causing poorer & poorer blood circulation to the tissue ultimately causing erectile disfunction and size-loss - that from your saying, doesn't stop getting worse after many years. Ofc the tunicas were probably damaged as well, but you get my point.
If a theory like that one would be accurate, there's a high probability that your case could be easily solved if doctors actually put time into the whole jelqing-injury thing. I highly believe that these kinds of injuries are very different from the "real" Peyronie's. I also read that you was diagnosed with potential scarring, right? You've lost size and also erectile function, but still no visible scars, curves or severe indentations if I understand it correctly. All this points towards a problem that I wouldn't necessarily call Peyronie's, but again I'm no doctor haha... just my 2 cents about it
I do however agree with you to 100% that doctors probably could've found a potent cure for all kinds of penile injuries by now if REAL measures were taken. There is always a slight chance a cure will pop off one of these dark days. The world is a crazy place, my friend. Don't lose hope.  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

popopo

You're right, there probably is a difference, but I gotta add that I do have lower than normal testosterone levels and the jelqing I did and VED I definitely overdid it, but while doing it I never realized just how bad it would become so there might be a genetic "tendency" to these issues I'm experiencing as well if that makes sense. I mean, there are people on these jelqing boards that did worse things to their penis than I did that are now totally fine. Also, there is scar tissue that the doctor can feel with his hand, it just doesn't show up on a doppler. My case defenitely is weird, but still I can't see how something that helps with peyronies would make me worse and the other way around. I mean.. the end result is the same: scar tissue in the penis, so you would think you treat itin the same way. By the way, I recently saw a post by someone who has hourglassing too and his picture looks a lot like how my penis is. The same deformity and his case is peyronies. Anyway, I'm getting really confused about this all myself and even the doctors seem confused. That's my main problem. I mean.. I'm not a doctor, so it's not weird that I can't proprrly diagnose myself, but even the doctors can't. More importantly the doctors can't heal peyronies, venous leaks, impotence or even just increase the size of a healthy penis. It seems absurd to me that the people that study the penis have so little knowledge about fixing any of the problems we're dealing with and I believe in a time where almost everything is possible that's a really bad thing.
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

melting

Everyone who has some idea of Peyronies Disease will not advise you to use VED nor traction when you're in the active phase or while inflammed/injured. That makes no sense. It's like cutting your thumb with a knife and then you stretch the skin apart to "heal it".

You keep repeating that VED is somehow viable in your situation. You're creating straw-man arguments, trying to convince yourself that there's no solution. You apply something that will not work. Then when the result is that it's not working you say nothing will work. That's nonsense.

Apply solution focused logic. No other way out of this.

Quotelower than normal testosterone levels
Tackle that. Low testosterone is associated with higher inflammation levels.  
Are you overweight? Are you healthy and fit? Can you do physical activities 2-3 times a week?
Quotevenous leak
Most probably your pelvic floor is a)unbalanced and b)weak. You can fix that(balance it and strengthen it)
Quotethere is scar tissue that the doctor can feel with his hand, it just doesn't show up on a doppler.
Cause it's still inflammed? Peyronies is mostly diagnosed when the tissue has "settled" and is "cold", which means the inflammation("hot") is down and the body dealt with it by encapsulating/cooling the inflammation with calcification. That's why the doppler isn't showing and probably the doc is confused.

Quotecialis, pentox
I would get back on these. They're not THE solution but help.  
I personally would divide the Pentox dose across the day cause it has a short half life and might be out of your body before it reaches the penis. Low dose cialis will help with having a more stable blood flow through your penis tissue.
(of course the most effective way would be to add transdermal application of Pentox via DMSO)

Forget about any tissue modulation stuff like PE, jelqs, VED etc. for now. You need to stabilize your blood/hormones/muscles etc. first. When that is sorted you can start to stretch the faulty tissue and increase the healthy tissue size,

Don't get me wrong, I understand your frustrations but that can't be the end of the story in any way.
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

Godisreal

What do you mean with "cooling the inflammation with calcification"? If it was like that, all scars and soft lumps would be calcified when exiting active phase. It seems stupid to exclude psychical therapies in active phase, since it's very difficult to remodel a calcified scar - which in your saying, happens for everybody at some point? I don't get it man. There's a very high number of people who use psychical therapies during active phase with great success.
And me, who has a lot of soft & small lumps around the tunica albuginea has no idea if I should start VED or not since everybody tells me different. Obviously I don't wanna injure myself even more. I'm in active phase btw, curve has gotten slightly better while the lumps keep coming more & more. What should I do?  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

popopo

My pelvic floor is actually very strong and too tight. My testosterone is naturally low, NOT becuase I don't work out or am too lazy or whatever. But like I said my doctors won't give me TRT cause in holland doctors don't know how to give proper TRT. It would be fixed with androxal, but that's a drug that's not approved by the fda and none of my doctors care so I just go on without treatment for it cause it's not necessary to them. So what do you do then? And the active phase for me has never ended after years of getting the initial injury. Lifestyle changes don't impact this at all. And NO I do not keep trying with VED cause I don't use it anymore, but I did try it in the past BECAUSE this forum tells me to and like I said even with very low pressure in the ved I get worse. I'm not TRYING to get worse, I just do. I don't understqnd why people attack me for having the wrong mindset when in reality NO MINDSET OR LIFESTTLE CHOICE has ever made a difference in the progression of the disease for me. If this all doesn't make sens to you, then that's okay, cause it doesn't make sense to me either anymore. I'm sorry for being desperate and negatige, but you would be too if you eat right, train hard, try ro get your life together but still end up with a smaller and painfull erection over time. By the way, I am on pentox have been for years and take it in a relatively high dose so that's not it. Is it really that weird that I want to hear something else than repeat with the same treatments that don't work for me? Not saying it never works, but it's obviously not as strong as you'd expect if I and other members don't react to it.
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

Bud luck

I think the "experts" will focus on surgeries and implants, they will make better  implants, nobody wants to find the cure
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Mr man

Hello popopo, godisrral, and any other youngster,

It may interest you to know. The penis is only fully grown at the age of 21. Therefore to have injured your penis at 17 is to have impaired its natural growth. This maybe one reason you have been in the acute stage for such a long time? It's completely understandable that you feel frustrated that this has happened to you at such a young age.

Having been fighting this disease for about 3 years. Am inclined to agree with other commenters on this thread. A logic based approach is required.

You need to stop all physical therapies.VED etc. Untill inflammation has completely reduced. Have you tried taking simple ibuprofen to alleviate the inflammation? You could try the thacket formula in the whole shaft and glans. Incorporating black seed oil. Black seed oil has healing properties. Do this before bedtime. Be open minded and experimant. For example: If there is irritation. Reduce concentrations. Explore other remedies for relieving inflammation. You can easily research these on the net.

What would happen if you stopped taking Pentox? Am just suggesting would it make things worse, better, or no change? Adjust Pentox intake accordingly. Consider stopping it even.

Try and give penis rest, relaxation, and pampering. To alleviate the inflammation.

If your testosterone level is low. Why not buy some oral tablets for this? Similar to what body builders take. You can research, source and buy these on the net easily.

Take a methodical step by step approach. Hope this makes sense?

My case was particularly difficult. After peyronie's I got blood sepsys. The poison in blood cemented and increased the plaque. It went solid hard. Pieces broke off. I lost that tissue permanently. Causing permanent loss of girth. The skin went black and peeled away. Skin necrosis caused me to loose 40% of penile skin. To one side. Causing a twist and bend when erect. When wound healed what came next was a large keloid scar on my penis. It looked like a worm wraped to my penis. Small movement would cause healthy skin to wrap around the scar. Causing stretch and pain. There are no cures for keloid scars.

At times phychologically It was hard. I thought about chopping off penis and not bothering. I even considered ending life. Penis looked a real mess.

But strength came from fairh. Healing came when I stopped obsessiing. Furthermore, when I approached the problem I step at a time. 2 years later. There is no scar, I have regrown enough penile skin for the curve to be streight. There is no more hourglass. Now I am dealing with the peyronie's. Using ideas on this site and other sources.

This was achieved without surgical intervention and with home remedies only. Through research, consultation with doctors, self education  and experimentation. In fact my surgeon is now trialing methods developed by me to remove scars on her paitients. It's a good feeling to contribute.to helping others.

My point is. Don't go by the book, or treat it just like a tick box exercise. Try not to ovethink. Employ the trial and error method. Take ideas from this site and doctors who advertise high success rates. Try them within a timescale the successor says it should work. If they don't work within reasnabke time. Move into the next idea. You wil learn from these experiences and accumulate knowledge.

I have tried countless stuff, before I hit jackpot treatments and success.

There is a silver bullet treatment out there. Waiting to be discovered. One day one of us will find it. Hopefully share it with all.
Latest routine. Started l-lysine 3mg daily, l-proline 5mg daily. Increased vit c intake. Accompanied with almost daily vacuum therapy. Pumping to 100% Exercise caution! Made good progress. L arginine supplements and prescribed potaba are helping.