Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

ALL Members PLEASE Add a Signature line with age, history etc
PROFILE -> FORUM PROFILE -> SIGNATURE
More instructions here -> Signature Line - History - Peyronies Society Forums

Pages: [1]   Go Down

Author Topic: Nothing works  (Read 806 times)

0 Members and 1 Guest are viewing this topic.

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 541
Nothing works
« on: November 19, 2019, 02:34:40 PM »

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 [email protected]< again.
Logged
Age: 24
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

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 541
Re: Nothing works
« Reply #1 on: November 19, 2019, 02:40:13 PM »

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..
Logged
Age: 24
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

  • This member has been warned for abusive behavior/inappropriate language.!
  • Voting Member
  • **
  • Country: hr
  • Offline Offline
  • Gender: Male
  • Posts: 34
Re: Nothing works
« Reply #2 on: November 19, 2019, 05:27:59 PM »

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
Logged
This member has been warned for his abusive behavior and inappropriate language.!

Godisreal

  • Solid Contributor
  • ***
  • Country: se
  • Online Online
  • Gender: Male
  • Posts: 212
  • Child of God
Re: Nothing works
« Reply #3 on: November 19, 2019, 05:48:42 PM »

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
Logged
Youngster with Peyronie’s and high erection angle, peyronies onset in September 2019.
Mild/Moderate dorsal curve, occurred overnight after re-injury. Flaccid narrowing. Hard flaccid. Flaccid pain/discomfort

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Nothing works
« Reply #4 on: November 20, 2019, 06:03:04 AM »

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 Erectile Dysfunction 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.
Logged
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,
relationship status, etc
** You will waste less time and get better answers **

Godisreal

  • Solid Contributor
  • ***
  • Country: se
  • Online Online
  • Gender: Male
  • Posts: 212
  • Child of God
Re: Nothing works
« Reply #5 on: November 20, 2019, 08:43:11 AM »

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.
Logged
Youngster with Peyronie’s and high erection angle, peyronies onset in September 2019.
Mild/Moderate dorsal curve, occurred overnight after re-injury. Flaccid narrowing. Hard flaccid. Flaccid pain/discomfort

kusher

  • Solid Contributor
  • ***
  • Country: mu
  • Offline Offline
  • Gender: Male
  • Posts: 117
Re: Nothing works
« Reply #6 on: November 21, 2019, 03:57:09 AM »

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!!
Logged
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

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Nothing works
« Reply #7 on: November 21, 2019, 09:44:19 AM »

Stage, Plication, Nesbit are just little more than names.
Logged
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,
relationship status, etc
** You will waste less time and get better answers **

TonySa

  • Think Tank
  • **
  • Country: us
  • Online Online
  • Gender: Male
  • Posts: 3094
Re: Nothing works
« Reply #8 on: November 21, 2019, 05:46:16 PM »

This is not a magic bullet but there is some research showing 50mg nightly viagra can improve erection quality over several months. 
Logged
PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

kusher

  • Solid Contributor
  • ***
  • Country: mu
  • Offline Offline
  • Gender: Male
  • Posts: 117
Re: Nothing works
« Reply #9 on: November 21, 2019, 07:30:03 PM »

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
Logged
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

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Nothing works
« Reply #10 on: November 22, 2019, 03:04:22 AM »

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. 
Logged
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,
relationship status, etc
** You will waste less time and get better answers **

kusher

  • Solid Contributor
  • ***
  • Country: mu
  • Offline Offline
  • Gender: Male
  • Posts: 117
Re: Nothing works
« Reply #11 on: November 22, 2019, 01:47:54 PM »

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
Logged
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

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 541
Re: Nothing works
« Reply #12 on: November 22, 2019, 10:58:46 PM »

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.
Logged
Age: 24
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

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 520
Re: Nothing works
« Reply #13 on: November 23, 2019, 01:44:30 AM »

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
Logged
46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

Hontas

  • Major Contributor
  • ****
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 376
Re: Nothing works
« Reply #14 on: November 23, 2019, 11:22:42 AM »

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.
Logged

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Nothing works
« Reply #15 on: November 23, 2019, 12:39:55 PM »

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.
Logged
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,
relationship status, etc
** You will waste less time and get better answers **

TDix

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 520
Re: Nothing works
« Reply #16 on: November 23, 2019, 02:29:29 PM »

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
Logged
46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 541
Re: Nothing works
« Reply #17 on: November 23, 2019, 03:09:52 PM »

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.
Logged
Age: 24
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

  • Solid Contributor
  • ***
  • Country: se
  • Online Online
  • Gender: Male
  • Posts: 212
  • Child of God
Re: Nothing works
« Reply #18 on: November 23, 2019, 04:55:25 PM »

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
Logged
Youngster with Peyronie’s and high erection angle, peyronies onset in September 2019.
Mild/Moderate dorsal curve, occurred overnight after re-injury. Flaccid narrowing. Hard flaccid. Flaccid pain/discomfort

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 541
Re: Nothing works
« Reply #19 on: November 24, 2019, 06:51:08 AM »

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.
Logged
Age: 24
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

  • Solid Contributor
  • ***
  • Country: se
  • Online Online
  • Gender: Male
  • Posts: 212
  • Child of God
Re: Nothing works
« Reply #20 on: November 24, 2019, 08:28:49 AM »

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.
Logged
Youngster with Peyronie’s and high erection angle, peyronies onset in September 2019.
Mild/Moderate dorsal curve, occurred overnight after re-injury. Flaccid narrowing. Hard flaccid. Flaccid pain/discomfort

AlexSamo

  • Solid Contributor
  • ***
  • Country: ru
  • Offline Offline
  • Gender: Male
  • Posts: 142
Re: Nothing works
« Reply #21 on: December 01, 2019, 09:48:38 AM »

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

samsung

  • Major Contributor
  • ****
  • Country: us
  • Online Online
  • Gender: Male
  • Posts: 343
Re: Nothing works
« Reply #22 on: December 01, 2019, 11:06:27 AM »

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.
Logged
44 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. 2 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

Jack1909

  • Major Contributor
  • ****
  • Country: it
  • Offline Offline
  • Gender: Male
  • Posts: 460
Re: Nothing works
« Reply #23 on: December 01, 2019, 03:27:28 PM »

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.
Logged
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,
relationship status, etc
** You will waste less time and get better answers **

samsung

  • Major Contributor
  • ****
  • Country: us
  • Online Online
  • Gender: Male
  • Posts: 343
Re: Nothing works
« Reply #24 on: December 01, 2019, 04:08:41 PM »

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.
Logged
44 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. 2 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
6 Replies
1849 Views
Last post April 20, 2014, 04:52:21 PM
by james1947
4 Replies
2447 Views
Last post May 20, 2014, 02:42:14 AM
by MeMo
4 Replies
911 Views
Last post January 08, 2018, 10:47:38 AM
by swiss