i need someone to talk about this

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20yo

Hey everybody. Thank you for reading this.
If you are here, you probably have Peyronie's, so I want to tell you that I feel your pain.
I am a 20 yo guy, and got the disease in 2019.
It has been the most I suffered in my short life. Yet, I can find nobody that understands it. I have
talked to my familiars about it, and they dismiss it with a "there is so much more to life than sex".
I feel like everybody has their own picture of life. Maybe their life didn't revolve around sex. But I used to fantasize a great deal about it (I actually never had sex), and my libido has always been strong. So this feels like an amputation.
It has ripped me away from my normal life and thrown me into a dark depression where I struggle to go on studying, telling myself everyday that it will get better.
But there is no day that I don't think about what I'm missing out. Every time I hear a song about sex, or any reference about sex and romantic relationship, I feel my mood precipitate and become basically unstable.
I feel like I will never know what it means to have satisfying intercourse with a loved one, one of the best things about life.
Life is full of suffering and problems anyway, so it's hard enough without Peyronie's. How can I bare the suffering and the pain if I see no light at the end of the tunnel.
I think it would really help me to find someone to talk (/vent) to about this condition, to feel less alone, so if you are or have been in my situation please write me.
Like others in this forum I have considered suicide many times.
I would appreciate also anyone sharing their dating experiences


P.S.: I am already seeing a therapist. But then again, I don't feel like he gets what it means to have Peyronie's
20 yo, Peyronies Disease 2020(55 degrees down) + congenital curve
loss of length, stable erection, sensation. hourglassing
antioxidants, hyaluronic acid injected & oral, maybe Yachia in future
Recently started VED 2x a week
Still wants sex and a relationship

Wilson

Hi 20yo. You are not alone. I got this disorder in April 2012, when I was almost the same age like you. I know how it's. I remember the first days after getting this. Hot weather beating my face, I don't feel my member during walking (loss of penile sensation) like an amputation and constant regret about injury inside my head on my summer vacation in Turkey. It's a real curse. So, it was my first nightmare days after developing it. Are you from Europe? Forget about general urologists. You need to find a true peyronie specialist, even though you need to travel. Now, after 9 years of wasting my life and suffering with it - Finally, I started research, due to this forum (thanks to forum founder and moderators) and started to talk with some famous peyronie specialists via their sites. Soon, I will try to travel. Hope, that you will find a good specialist. All the Best.
Young and regularly thinking about this issue
Peyronie's without curvature since April 2012 due to injury
Almost constant discomfort and Loss of penile sensation
Still fighting - trying to find a top famous specialist

Tortão Pra Direita

Tell us more about your condition. What's your current regimen? Do you do traction and VED? How bad is your curvature?
 
1993 born. Brazil.
Peyronies since Sep 2019.
Penis developed curvature, lots of plaque, loss of size and axial rigidity. Severe peyronie.
Mar/21 TEP + Titan Touch 20 cm + 1.5 RTE.

Surgery done by Dr. Marco Tulio Cavalcanti, in São Paulo.

Asphyxia

I started many posts on this board for having those same struggles, depression has begun many years ago and it completely demolished my physical health aswell ever since my first thought of suicide.
trying to battle this disease from every direction keeps me sane, somewhat.
It keeps a tiny light at the end of the tunnel aswell.
You can hit me up if you want to chat but i might just depress you even more  unintentionally ::)
Im also curious about your condition and current regimen
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

Xavier99

Hang in there.. What is your current curvature? Most guys can still have intercourse if it's 30degrees or less. There are therapies and surgeries if you seek the right help. It only ruins your sex life it you let it. I've be married to a woman who gets off only to clitoral stimulation.. The intercourse is only for me! I also have enough in notches in my belt to know she's not the only one whose body works like that.. Sex is not just intercourse.
35 yrs old
Onset 05/01/20 diagnosed 05/14/20. Taking Pentox, trental, multivitamin, Zoloft & Tylenol
Traction was painful and made it worse
Lateral plaque by glands 20 degrees left/ narrowing
Lost about 2cm length

Godisreal

Sending love to you, bro. This condition is devastating and I frequently battle the demons in my head telling me I'm f*cked. Everyday. Weather you've had sex or not, it's most certainly the fear of not being able to have satisfactory sex with your dream girl that hits the hardest.
You must understand that this either makes or brakes you.
You have an opportunity, 90% of men does not have. That opportunity is to build something. Build something out of the power you gained from overcoming these demons.
Make yourself proud. Battling a psychologically devastating condition like this gives you an ability to generate an insane amount of brain power and faith. Something only other people with horrible conditions have. But personally, I believe nothing is more challenging, for a male, than having Peyronie's.
You better believe that you can make it. And believe in yourself.  
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.

Anton36

Hey man

      After my peyronies I had a girl. We were together 5 months. If I talk about sex it was nice. But sometimes I lost my erection during second intercourse. One day she started to me kidding about second round. She knew I had a some sexual problems in my mind. Because everytime I tried erection again and again.  When she started to laugh I slapped her face twice. She did not understand what happen. I told her F~@< off. She started to cry. After 1 week she texted me again again. I never answered.

 what we can tell from here is don't get into an inferiority complex
age 25
first symptoms: Flaccid Pain
official diagnosis 2017 after ultrasound
treatments tried All oral drugs

20yo

Hey brothers, I really appreciate all of your responses. I feel like this is probably the only place I can find some actual solidarity and it gives me a lot of hope.
I am indeed from europe.
I have a 45 degree curvature downwards, loss of lenght and loss of circumference (I haven't had the courage to measure). I also have erection problems. At this point I can't even tell how much it's the depression fault, how much is Peyronie's.
I went around my country looking for the most rated Peyronie's physicians, and heard many different opinions. Nobody suggested for traction devices or VED, in fact they suggested against it for my particular situation, so I didn't even consider touching them. Additionally, I asked to my current urologist (he's supposed to know a lot about Peyronie) about Pentox and he said it was a fraud used by dishonest doctors.
Right now I'm just taking orally hyaluronic acid sticks every day and Oasit k (supplements).
In a few months I'm supposed to call my urologist to talk about a possible operation.
Quote from: Asphyxia on January 28, 2021, 04:12:32 PM
I started many posts on this board for having those same struggles, depression has begun many years ago and it completely demolished my physical health aswell ever since my first thought of suicide.
trying to battle this disease from every direction keeps me sane, somewhat.
It keeps a tiny light at the end of the tunnel aswell.
You can hit me up if you want to chat but i might just depress you even more  unintentionally ::)
Im also curious about your condition and current regimen
I can really relate to "demolished my physical health". I used to work out and eat pretty good but now I don't even really care as much anymore. But deep down I know that if I plan on getting out of this, I need to stop this mindset and get back on my old habits.

Quote from: Godisreal on January 28, 2021, 08:27:34 PM
Sending love to you, bro. This condition is devastating and I frequently battle the demons in my head telling me I'm f*cked. Everyday. Weather you've had sex or not, it's most certainly the fear of not being able to have satisfactory sex with your dream girl that hits the hardest.
You must understand that this either makes or brakes you.
You have an opportunity, 90% of men does not have. That opportunity is to build something. Build something out of the power you gained from overcoming these demons.
Make yourself proud. Battling a psychologically devastating condition like this gives you an ability to generate an insane amount of brain power and faith. Something only other people with horrible conditions have. But personally, I believe nothing is more challenging, for a male, than having Peyronie's.
You better believe that you can make it. And believe in yourself.

I really feel your words. The only times I actually see a light at the end of the tunnel are those moments where I come to forgive myself and what has happened to me, and "love" my self as I am, not in spite of the disease but because of the disease, and of how I still fighting it: I feel proud. It might sound clichè, but if we get to the end of this, we are going to be more of a "man" then any random dude with a 20 cm penis.
But then again, this is how I feel on my best days.

Quote from: Anton36 on January 29, 2021, 07:47:06 AM
Hey man

      After my peyronies I had a girl. We were together 5 months. If I talk about sex it was nice. But sometimes I lost my erection during second intercourse. One day she started to me kidding about second round. She knew I had a some sexual problems in my mind. Because everytime I tried erection again and again.  When she started to laugh I slapped her face twice. She did not understand what happen. I told her F~@< off. She started to cry. After 1 week she texted me again again. I never answered.

 what we can tell from here is don't get into an inferiority complex

Fck her dude. If anything you got rid of a piece of crap. Imagine having her raising your children.
A friend of mine posted something on instagram that made me laugh.
It was something like: "There are two types of trash. There is the trash I have to take out in the morning everyday and throw in the bin and then there is the trash that takes itself out and goes away on their own."
Some people are gonna leave us but it is important we keep our self esteem high and respect ourselves.
I'm struggling a lot about this but I will get there.
20 yo, Peyronies Disease 2020(55 degrees down) + congenital curve
loss of length, stable erection, sensation. hourglassing
antioxidants, hyaluronic acid injected & oral, maybe Yachia in future
Recently started VED 2x a week
Still wants sex and a relationship

Asphyxia

I dont trust doctors, and i wonder if you also shouldnt .
they only misdiagnosed me or told me that nothing can be done.

Is it because the curve is downward that they said you cant do traction? I honestly dont know if thats true but maybe you should ask around here.

I encourage you to take matters to your own hands and not just wait for a surgery
You ought to look at it as the last resort.
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

Wilson

Asphyxia, After our recent personal conversation, still can't believe that modern Israeli medicine, which considered one of the best in the world and create modern technologies - simply don't know what to do with Peyronie. Since childhood I always been hearing that most people in my country prefer Germany and Israel for the severe disorders and different incurable diseases and been reading in newspapers good reviews almost with a miracle cases related to German-Israel medicine. Even during the walking down the streets a long time ago - I heard how the neighbors or random people promoted and discussed with each other their happy experience with the Israel medicine. And the current reality now is that those countries simply don't know what to do with a penile disorder. So, It's really weird and mystery!
Young and regularly thinking about this issue
Peyronie's without curvature since April 2012 due to injury
Almost constant discomfort and Loss of penile sensation
Still fighting - trying to find a top famous specialist

Godisreal

Wilson,
That is very true. But the belief that there's not a way to solve this already, is quite frankly an ignorant belief. People just can't admit that money can buy everything in this age.
You really think $10 000 000 couldn't give a Peyronie's patient a perfectly healthy and functioning penis? Come on, guys.
Think about it. Both Magic Johnson & Charlie Sheen mysteriously got "cured" from one of the most aggressive and seemingly incurable diseases known to mankind. Just like that.
They measured Charlie Sheen's level of the HIV-Virus in his body after treatment - it was the same as a healthy non-HIV patient.
The controversy was, of course, found in the fact that he hadn't gotten the treatment done at the local doc. No, he'd gotten it done at the office of an unlicensed Mexican doctor that used "different" methods.
The only similarity found between Magic Johnson and Charlie Sheen, besides HIV, is that they are both VERY rich.
Fixing a fibrotic disorder in the penis? Definitely possible. No doubt in my mind about that. But no simple urologist who's barely covered by your health insurance is gonna fix that. That, I can assure you.
You'll have to look outside the frames.
Not all people are willing to accept that.  
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.

Godisreal

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.

Wilson

Godisreal, you are right. Sometimes I think that we should have been born in a late 22-23 century as Peyronie is a stupid-idiotic crap for the 21 century.
Young and regularly thinking about this issue
Peyronie's without curvature since April 2012 due to injury
Almost constant discomfort and Loss of penile sensation
Still fighting - trying to find a top famous specialist

palo15

Godisreal, why would Charlie Sheen travel to Mexico to be treated by an unlicensed Mexican doctor who used "different" methods to treat his HIV? This isn't 1987. Where'd you hear that from? And this brought his viral load to undetectable levels? Why wouldn't he just have gone to traditional hiv specialists in his own country, and had standard therapy? It would have had the same result of bringing his viral load to undetectable levels. And hiv is not "seemingly" incurable, it's 100% deadly without treatment. It's controllable but not curable. And there's no vaccine for it. Neither Magic Johnson nor Charlie Sheen are cured of HIV and they likely never will be. They go off their medication and their HIV will come right back and progress to death if untreated. That's the reality.

There are 3 reasons why Peyroines is a neglected area of medicine.  1) it only affects 10% of men, (and virtually all of them are of European ancestry, suggesting a genetic component, so the worldwide rate is much lower) 2) the mean age of onset is in men 55-60, and no one really gives a hoot about the sex lives of men over 55 (except men over 55 of course), and 3) it's 100% benign. That means, untreated it will never kill you. Put all that together and it's just not an area of interest for most doctors. It's pathetic that they forget men of all ages can get it and that it can be psychologically devastating. That's the worst part.  
WARNING - This member has been identified as putting out large amounts of misinformation.

AnaDuck

I totally understand, I was first diagnosed in 2011, when I was only a teenager. It devastated me, the psychological distress caused me to throw away an athletic scholarship because it dropped me into a deep pit of depression. I started using drugs heavily to escape the emotional distress, I wanted to die many times; often I felt like a freak and the pain killed me. I totally understand what you're feeling, but I promise that it gets better.

Hindsight is 20/20. Looking back, my reaction was so overboard. However, it was a blessing at the same time. Since I threw away that scholarship, I eventually enlisted into the military, met my wife and I have a family now. It does get better, if it got better for ME psychologically at least, then you have hope, I promise.

Wishing you the best.  
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20yo

Quote from: Asphyxia on January 29, 2021, 04:17:25 PM
I dont trust doctors, and i wonder if you also shouldnt .
they only misdiagnosed me or told me that nothing can be done.

Is it because the curve is downward that they said you cant do traction? I honestly dont know if thats true but maybe you should ask around here.

I encourage you to take matters to your own hands and not just wait for a surgery
You ought to look at it as the last resort.


they basically said that traction is indicated only in certain cases and not in mine, because the cause of onset was traumatic, so traction could do more damage.
I have to say i have been trying manual traction initially but i now decided to trust them, because what else can I do, I'd rather trust them than myself. I would really like to think traction would help me but unfortunately I don't think it's reasonable in my case.
Additionally I read stories of people regretting using traction devices in this forum.
I agree that surgery is to be avoided if possible, but what can I do? As I said my doctor said pentox is useless and antioxidants also are. He's supposed to be an expert of this disease in my nation.

Quote from: AnaDuck on January 31, 2021, 04:20:53 AM
I totally understand, I was first diagnosed in 2011, when I was only a teenager. It devastated me, the psychological distress caused me to throw away an athletic scholarship because it dropped me into a deep pit of depression. I started using drugs heavily to escape the emotional distress, I wanted to die many times; often I felt like a freak and the pain killed me. I totally understand what you're feeling, but I promise that it gets better.

Hindsight is 20/20. Looking back, my reaction was so overboard. However, it was a blessing at the same time. Since I threw away that scholarship, I eventually enlisted into the military, met my wife and I have a family now. It does get better, if it got better for ME psychologically at least, then you have hope, I promise.

Wishing you the best.

thank you brother for this answer.
It really stuck in my mind and helped me.
I am so glad that you found peace and a romantic relationship, and am grateful you shared your inspiring experience.
I'm glad I hadn't the occasion to do drugs otherwise I probably would have done them too. I tried other ways (some healthy, some not) to numb the pain. Now I'm trying to deal with it directly and see where it brings me.
I know I replied really late but i'll still try to ask you.
Do you have any suggestion with dealing with the grief? How did you do it and how long did it take?
Do you have sex now?
It's a lot  of questions, but they would really help me, as currently i'm kinda lost
20 yo, Peyronies Disease 2020(55 degrees down) + congenital curve
loss of length, stable erection, sensation. hourglassing
antioxidants, hyaluronic acid injected & oral, maybe Yachia in future
Recently started VED 2x a week
Still wants sex and a relationship

AnaDuck

With time, I learned how to do other things and try not to obsess over it. I do have sex, I didn't have much of a curve though, I had an indent and erection changes. I realize I had it milder than some, still very psychologically distressing.

I would recommend you getting a RestoreX device. I've been using mine for nearly 3 months, and I've noticed:

More girth, more fullness in the plaque area, a more spongy feel (less hard flaccid) in the flaccid state, and a drastic improvement in erection quality.  
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Hawk

Admin Note:  I split all the posts about RestoreX vs Standard Traction off of this topic.  I put them in a new topic and moved it to the Traction Board.
That topic can be found here ------------------> https://www.peyroniesforum.net/index.php?topic=15341.0
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

20yo

thank you for your reply ana.
I'm glad you are still able to be functional.
I did consider buying restorex, excpept all the specialists i talked to were against the use of traction device. They said it causes more harm than good. I really don't know what to do but i'm realy afraid of harming the scar tissue again
For now my hopes is that i'll be able to experience sex using toys and other ways not directly regarding my penis
20 yo, Peyronies Disease 2020(55 degrees down) + congenital curve
loss of length, stable erection, sensation. hourglassing
antioxidants, hyaluronic acid injected & oral, maybe Yachia in future
Recently started VED 2x a week
Still wants sex and a relationship

Mikel7

Hey 20yo ,       Be encouraged !  You are going to make it through all of this. You will find out what will help
  you and what will not.  Yo u  are still young and will heal much quicker than some of us older gents here.
  You will find a girl that loves you for you and will have a relationship. Listen to your doctor and keep reading and learning from all of us on this forum. This is school for us and the best place to be with this god awful disease. I might add my 2 cents here : antioxidants and supplements will not hurt you and may actually help you. COQ10, ALCAR, Vit C, and some  Vit E  may help with the healing process and the curvature. Also explore heat therapy also.  Remember you are not alone! Every man here also has a penis
and knows what it's like when this ugly monster rears it's head.  :)
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

20yo

thank you brother, i hope you are right that i will somehow heal a little.
i will without a doubt keep myself informed and try to research, because as we already know many urologists will not do it us for us :/
it's true, we are not alone. It does feel like it, when nobody knows of this disease and nobody has heard of it, but the existance of this forum proves it's not like that.
i've read stories of guys here that found a relationship and thrived and this is what really motivates me to push forward, see the light at the end of the tunnel.
again, thank you for your reply and good luck with your healing
20 yo, Peyronies Disease 2020(55 degrees down) + congenital curve
loss of length, stable erection, sensation. hourglassing
antioxidants, hyaluronic acid injected & oral, maybe Yachia in future
Recently started VED 2x a week
Still wants sex and a relationship