Am I really the only one???

[popopo]

Hello people, I know some of you think I'm a toxic piece of crap and maybe I am.. But am I really the only one getting tired of seeing the same treatments adviced to people over and over again??? In short these are basically VED, pentox, cialis and traction. doesn't work? You must have overpumped... can't get out of active phase?? You probably lead an unhealthy lifestyle. If all else fails you can go for an implant. Not happy with that? Your own problem. You must be psychologically sick for not wanting a tube inside your dick and still being left with a lot less size you originally had. But hey!! Size doesn't matter! If you think it does you have mental issues. If you can't be happy with your broken dick you are crazy. People act like this, yet in the last 10 years NOTHING NEW has been discussed in this forum. Closest to a new helpfull topic is fasting and that's not even a treatment it's a diet. I feel like we are left in the dark here and where 50 percent of people are satisfied with the help they got here, I'm sure the other 50 is still suffering and has been for years without any proper treatment coming around. Am I really crazy for wanting more? Am I really the only one that cares about the end result?? I mean why let a doctor butcher your penis if the result isn't worth it?? But that's probably just obsession/perfectionism on my part. Well guess what? It's not. I have all the right to complain. I've been in active phase for years now and nothing stops the progression. I'm lucky enough that the progresssion slowed down, but a full stop?? no more pain and no more progression of the disease?? I'm still not there yet and that's getting old. My doctor hasn't even properly diagnosed me yet. I hope he will next month when I visit him again after years of just waiting and accepting I have no functional dick anymore. I know people hate negativity and therefore try to somehow blame me and my mindset for all of this, but I can't be the only one. I know there isn't much we can do about how SLOW change is happening and how we might never live to see a cure, but I feel like my frustration is justified. I may not have the right to take it out on others on this forum.. that's true. But I'm not hurting anybody by keeping it real am I? Why do I get so much hate for just stating the obvious and saying what a lot of people in the same situation feel deep down? I know it's socially accepteable to be happy all the time and not bother others with your problems, but deep down I know a lot of people (especially young people) totally understand what I say and feel the same.

[Jack1909]

Starting a fundraising could be the way. But, as most of the conversations in here, it ended up talking trash. Alpha men versus beta men, getting some length, so on.  

[popopo]

Talking trash?? I never talked trash in these telegram groups. I don't know if you remember but if anything I was always the one trying to calm down the discussion and not picking any sides. I was usually in the middle of you and another member who's name I can't think of right now. I was always open to the idea, it just seemed like nothing productive ever happened and I don't blame you, I don't blame anybody in that telegram group, it just seemed a bit pointless cause nothing ever happened that's just how it is.

[Jack1909]

Yes you did. Im not ripping into you, I'm just disappointed. After many years having to do with this crap, you are still talking about alpha men and beta men. Something basically should not exist especially for us which we have had the chance to get to the real meaning of how things are down there. You showed me a pic of your penis. It was straight. The length above average. The fact you got to take a picture of your penis erected makes me think you are enough functional to have intercourse. Especially with high dosage of medication. Ok, IM sure the overall feeling is bad, there must be many bumps and lumps, but try, try, try. Give a damn try.

[popopo]

I was in the middle of discussions between you and another guy in the telegram group. I simply agreed with him cause he made a lot of points and you just keep telling both of us we're wrong and nothing is wrong with us cause your own problem is worse and size is not an issue for you we know so you think we're complaining about nothing. Honestly I don't even wanna discuss if size matters or not and I know it doesn't to you because you didn't lose size while we did. I don't really care exactly what makes our problems different and I was done discussing all these issues, but like I said nothing ever happened in this telegram group. I was not there to discuss with you or talk trash, I do not care.. but I would still be in the group (in fact I still am in that group I think) if something usefull was discussed there but it did NOT happen. Don't blame me for that cause I was always open to do whatever it takes but to me it seemed like none of us even knows what that is and what we need to do to get further. Last thing I remember was that you where gonna create a website and that never happened. Like I said, I don't blame you, but definitely do not try to blame me. Also, it doesn't really matter that we see things differently, we could have agreed to disagree and move forward, but I feel like you don't really want to or don't know how and neither do I so now what?

[TDix]

Is your doctor a specialist (andrologist) or just a urologist?

[Jack1909]

No, it was me and other guys which wanted length issues to be involved. And no one wanted to put his face on it.
I wont create anything as long as I will be surrounded with people obsessed with measures. The Russian guy was 16cm, you are art least 15 and, for the record, I did lose size. I had 3 surgery dont you think I did?

Referring to the title you gave to this discussion. What are you asking for? I may speak on the behalf of many in here, we don't understand what your problem is. I don't.  

[kusher]

Alot of stupid ppl evaluate their erection health by masturbating which is really childish and funny. The only way u can test ur erection and function is through sex. This is not my opinion. World class reconstruction urologists opinions. It makes really really sense. Our organ was not made to be rubbed by dry palm. It was made to be inserted into soft wet p~$$%. Jack i respect that after all what u had, u tried multiple times to sleep with women. It not easy I know. It takes a whole other level mentality to accomplish what u attempted  

[TDix]

To call people stupid is inappropriate.  To say that masturbation is different than sex is true, but what if that is all they have?  Condescending comments are not productive to anyone here

[TDix]

Stupid and funny??? You find other men suffering from this condition in that regard?  I feel sorry for you that you are not more compassionate to other men that suffer with something you also suffer from

[TonySa]

Tdix is def ON the mark w such comments...please let's have compassion for one another guys!

[TDix]

Tony I hope that's a typo when you say I'm off the mark😂

[TonySa]

Yes. Sorry, changed it 😊

[popopo]

Jack you're talking nonsense right now. Nothing ever happened in these telegram groups. Don't try to blame me for that and like I said to you before I don't understand why you still assume that your case is the worst ever and I have nothing to worry about. You assume that by the picture I showed you? Well, guess what...? When you showed me your picture all I saw was a big fat cock that could be in porn, but I'm not questioning you, am I? I never once assumed you where making this up and I never questioned anything you told me, so why are you questioning me? And for the record I too tried to sleep with women many times, but I gave up cause it doesn't work the same anymore and I only end up with an even more sore penis. I said before that I still have pain and worsening. So what's the point of "trying" to have sex with women when every time I try it doesnt feel good, it even hurts. I can barely even get pleasure from masturbation for the same reason, but I do it anyway just to relief myself or get myself to sleep easier at night. Sex is no longer fun for me so I stopped trying. Trust me when I say I would have a lot of sex if it did still feel good and I was able to perform. The reason I made this post was just to see if more people feel like current treatments are falling short and if they also think there should be a way to really treat/cure this disease. Not trying to bash you, but I think the real reason you didn't create a site is becausr you're also clueless just like me and wouldn't know how to tackle this problem. You where gonna create a site and then what? I wouldn't know and neither do you, but you rather blame it on me and the other guy in the group than just admit you can't build a website and even if you did you wouldn't know what to do next.

[Jack1909]

I dont blame anyone. I don't need to prove anything and I still believe fundraising is good kickstarter. You don't need to be alone, though. There must be a common goal, also. Possibly people willing to put their face on it. It has been raised 78 million dollars just on a promise of a damn videogame, I don't see why it could not be done the same on a health issue. It's not easy, but we should take a shot. You don't really know how it is, before getting it started.

You are wrong. I do know what my cure is. Autologous graft to replace the big stitch that is responsible for most of my problems. It won't cure everyone, but it would help millions. It might tackle ED, curvature, lack of sensation, plaques...a set of things you are not familiar with. And that the reason why I asked you what do you imagine as a possible cure for your condition. I can't see anything but anti inflammatory power of stem cells. But, here we go again. It would be hard to get stem cell injected into your penis if there is nothing visible, nothing palpable and nothing detectable with a medical test.

What I am supposed to say about what you commented on my penis? So, having a big penis is just what life is about, isn't it? Everything boils down to alpha and beta men. Man, really, no cure will hep you as long as you get so much attention to measures. Porn? No thanks, just a girl to build up a life with.

(I dont remember what picture you saw, but it takes just a picture to me to show the tissue hardening and the curvature)

(

[popopo]

I'm not saying a big dick is everything. All I'm saying is that when I see your picture I see nothing wrong and I actually see a penis that's so big you COULD be in porn, not saying you should do porn at all. I wouldn't want to be in porn either. But you explained to me what's wrong with your penis so I believe you. But when I tell you something is wrong with my penis, you keep questioning me like it's no big deal. If you where my size you wouldn't want to lose more. I understand that for someone like you size is obviously not an issue. I wouldn't care either if I went from 10 inch to 8 inch, but I don't have as much to lose as you do. Of course regaining full sensitivity and erection quality is the most important. But the lost volume is also a problem (to me) and I don't like it when someone who has like twice my girth tells me it doesn't matter when it really does. First comes erection quality and sensitivity I totally agree and that's my main problem as well, but I also want to regain the size and shape I had cause I'm not happy that I lost so much volume when my original size was average to begin with.

[Godisreal]

Seems to me like you completely threw away most of your youth worrying about such irrelevant things popopo. My dick never was anything special, if anything it's more special now than before lol.
My dick is a curved motherf*cker now, it has lost girth which is sad, but I would be insane if I threw away my glorious dreams because my dick is a bit f*cked up.
For you, the good thing is that it's not too late for you to stop whining. My understanding is, you can still have sex and your dick is completely functional. I just read about you having "surprisingly good EQ" ahahahahh man... there are 9 inch monsters that have complete erectile disfunction who are SEVERELY DEPRESSED, because they in fact can't have sex. And if that were you you would have the up most right to whine like a b*tch.
If you had severe erectile disfunction and/a severe curve I would understand your constant complaining, BUT YOU DO NOT.
There are countless members on here that just keep on trying to make your sorry ass feel better, but they stop after a while since you're completely hopeless. Correction; your attitude is completely hopeless. You can still and always better your useless attitude and go chase your dreams man.
You get a little sore after sex? Live w/it, you have lost girth? Fkn get used to it, a cure is around the corner, you have my word on that - but you still won't achieve any form of happiness if you don't fix that outright pathetic & poisonous attitude on life.
F*ck, man, I'm just trying to help you here. Take my advice and stop being so obsessed for the love of God.  

[popopo]

I stopped reading halfway. You are so full of it. You know nothing and make a lot of bold assumptions. Please get some common sense before posting here. Also, if any moderator reads this, please do something about this behaviour. I'm being attacked, basically called a fraud and with a lot of curse words to top it all off. What the hell?

[Godisreal]

You shouldn't stop reading halfway through my text, I'm definitely harsh towards you - perhaps a little too harsh. But I'm not typing any of my texts to drag you down or to make fun of you. I can assure you that. I'm just trying to help you, and it's very sad & depressing to see someone with such a broken view on sex appeal & on life in general.
I know you need to see a therapist and get help, psychologically speaking.
I always put a * on my curse words btw, and again, I'm not attacking you in any way.
But I've watched you complain about the same things over and over again, and I see how many kind people on the forum tries to help you - but with no effect.
Like I wrote to you in PM, I'm just making my assumptions out of what you express and type here on the forum. I don't pull conclusions out of my ass just to mock you, that's not what I'm here for.
I'm here to help people as well as help myself. It's okay if you don't believe that, your opinions means very little to me. I've only been here for a short period of time, but my knowledge often lies at a very high level - not only speaking about Peyronie's disease.  

[popopo]

You wanna help me? Please stop blaming my psyche and tell me how I can cure this disease. That's the point you are missing. I'm not waiting for a pity party, not for psychiatric diagnoses either. I'm waiting for a cure. If you can't help me with that, fine. I don't blame you cause I don't have the cure either, but please stop pulling advice out of your bum.

[TonySa]

Hi guys, maybe just let it be and not respond to each other's posts for awhile while you both cool down.  Seems like you're both well intentioned but just triggering each other...which is easy to fall into when having this damn condition!  

[Godisreal]

You're right, Tony. My goal here is not to trigger anyone, and neither am I getting triggered of popopo's posts. My techniques in order to help people out might seem a bit off the hook or odd, I know that about myself.
And popopo, I think I've mentioned several times that what for me will be the cure for this disease.
And God tells me those methods are the right ones. Check my other threads/posts and read there.
Lastly, I apologize if I've offended you in any way. That was never my intention.
God bless you

[popopo]

It's all good godisreal. In the end we all want the same thing and that's better treatments (or even a cure) for this disease, right? I think it's no use to try and convince you how bad my situation is and you won't convince me that it's mostly in my head either so I think it's best to just give it a rest.

[Godisreal]

Nah, man. I will never tell a member on here that their problems are not real. That's probably the worst thing to hear as a patient, "Give it a rest, you're just imaging things", among other ridiculous statements that both members and doctors utter.
But yeah, we do need a cure - but it's already here according to me.
No matter the severity, all those who have the willpower will get cured.
I can't speak for the law-system or how fast the LEGAL scientific process is going, but I do know that if I let a skilled surgeon (for example the man who performed those famous successful experiments on the rats, which in fact were legal and perfectly according to the plan of the system) I would get my dick back to nursing health.
Please take my word on that, and have some faith.
This disease will be irrelevant in 10 years.  

[melting]

Your frustration is justified and you're not alone! But at some point you have to overcome it in some way.

There will never be a "cure" that's easy go pop a pill.
Deal with it!

There are different ways to end up w/ peyronies. That's were a lot of the frustration dealing w/ it in forums comes from.
Could be a single injury that didn't heal properly, a systemic issue or both.

If you're super healthy and just broke your dick in a bad spot that's a rather "easy" case to deal with. You just have to get rid of the faulty tissue or influence the faulty tissue in a way that restores function.
If you have problems with your health,blood,pelvic floor, chronic disease then that will complicate things and many protocols wont work until the underlying problem is solved/contained.

A Xiaflex type injection that "dissolves" the plaque is the most straightforward "cure" that makes logical sense without having to go through all the DIY we do in this peyronies community.(apart from "cutting it out")

In Germany I had no access to that. So after the first frustration phase I solved my underlying problem(diabetes-bad blood-bad health) and then worked for month and years to soften and remodel the plaques while strengthening the penis tissue around it. The result is a functioning Penis. A lot of right decisions into the right direction will net you positive results. If I had waited for some doc or a cure I would still have no dick to F~@< with.

When I read that you masturbate while being in an active inflammed phase I see you're doing it wrong. Every time your masturbate might create another inflamed tissue that results in another plaque. Now, obviously it's hard to not masturbate but have to overcome that until your tissue is in a state that allows masturbation.

At this point I doubt that any Doc in europe will solve your peyronies. IMO all you can hope from them is to get some medications that assist and get the diagnostic help, like blood/hormone tests, to see if you have an underlying problem that turns every inflammation into faulty tissue.

[Godisreal]

Good explanation, melting. But I can't say I agree on your point about masturbation resulting in another plaque. That's insane. If I masturbate three days in a row, that gets me worse.
Masturbating once a week at full erection, however, won't cause any additional damage.
That is if you do not have any underlying medical condition/constant inflammation like you also mentioned.

[melting]

Well, that's a completely individual thing and everyone should gauge that with logic and common sense.  
If someone is inflamed, not matter where in the body, you won't put more pressure and strain on that tissue until the inflammation is gone.  
And if your foot gets inflamed whenever you're running you should stop running until you know why your foot gets inflamed running.

[Godisreal]

Exactly, I also now realize how I mention wrongful things just to sugarcoat my own behavior lol.
Your statement is correct and it only requires common sense to understand it's concept.
However, the word "pressure" isn't really saying it all. I mean, people often say sex is okay during acute phase and so on. So how could not light masturbation be that as well? Just thinking out loud.
I could masturbate 2 times in a row and nothing gets worse. Then next week I masturbate one time and I get pain again. F*ck, i believe it's time for a no fap of 1 month at least.
God bless you, melting.

[melting]

You could observe in detail what circumstances lead to a problematic masturbation and what leads to a "good" masturbation. Food, intensity(1-10), mood, position, duration etc. and then adjust accordingly.
The range to do it right is a lot smaller for people in our situation with what to get away with.

I see a lot of 101010 ON/OFF statements on these forums.  
You can masturbate like a maniac, death metal grip or like you're playing a Stradivari. And A LOT inbetween.

Same goes for traction, VED and medication.
You can traction your penis until its cold and tissue is snapping apart and you're 100% worse off.
You can traction your penis like protecting a feather and nothing good nor bad will happen, time wasted.
OR you can try to get close(!) to just the right duration, intensity and frequency for your situation.

How often do we read someone tried a medication and says it doesn't do anything?
Pentox for example. Just looking at the half life of Pentox it makes no sense to use the dosage once a day! Rather split it across the day. Such a decision, for example, would, IMO, give you a higher chance to solve inflammation and peyronies(to stay on topic).

There's has to be a rationale, solution focused, behind our actions going forward or we are running the wrong way.

[Godisreal]

Your reasoning makes perfect sense. I personally take Pentox 3 times a day. One in the morning, one at lunch and one before bed. While my curve is present and not very pleasant hehe, I got rid off hard flaccid after approximately 2 months after onset. It was almost constant before, and bam it was just gone. And it hasn't come back ever since. That's a very positive thing for a guy like me, I feel like my case is basically just a few injuries stacked on top of each other ultimately causing Peyronie's. I don't have pelvic floor issues, neither do I have erectile disfunction.
My case is definitely getter better, slowly but definite. My narrowing was pretty severe before, it now "comes & goes" where it sometimes fills out like before and sometimes it looks like a dying cat, God it's thin sometimes.
Anyway, I think I'm gonna go all out no fap for at least 1 month just to see what benefits that gets me. I'm now roughly 3 months into this, and I feel like no fap could help me out a lot. Especially combined with the oral treatment I'm currently on. I've said I'm gonna do no fap a lot of times, but I seem to relapse like a drug-addict every time.
From now on, it's no fap for me.
God bless and take care people  

[melting]

No fap can turn into a rather strenuous exercise for some. As said, you probably can masturbate just do it gently, lubed etc. I personally think a fleshlight(or similar) would be a good tool for a lot of peyronies sufferers cause it avoids the pressure grip many use to get over the edge.
Same with sex. If it's a gentle in and out a vagina can be great for someone with Peyronies Disease but if it's acrobatic positions that bend the penis then it can get worse.

You are certainly right that for some the peyronies is just the end of a cascade of problems. And from a location standpoint the penis is that too. Many do have pelvic floor problems which can start at the back whose muscles are directly connected to the PF which is directly regulating the blood flow to the penis.

GL, I don't want to get too far off from OP, but then again we are discussing small adjustments that could help OP too. Accumulating these can lead to a solution.

[Godisreal]

The following will be a bit off topic, but apparently you never saw my post on another thread, so perhaps you could answer it here instead? It's an answer on your theory on calcification and exiting acute phase and this was my answer that you never saw;

melting, 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?

[mrmiyagi]

The following will be a bit off topic, but apparently you never saw my post on another thread, so perhaps you could answer it here instead? It's an answer on your theory on calcification and exiting acute phase and this was my answer that you never saw;

melting, 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?

You need to go to a pelvic floor therapist bro, they can help a lot. Just do it. They can relax muscles around your penis by massaging inside your ass lmao. It may help to target some muscle releases in your back first because everything comes together at the pelvis so everything has to relax together.

I definitely agree that, especially for us younger folks, peyronies is the culmination of a lot of things. Bad posture  which eventually leads to poor pelvic muscle function, genetic susceptibility, maybe even diet for a lot of us.  

[melting]

Godisreal, that's cause you're everywhere :p
But anyway.. I guess it might help OP too and it's actually in topic regarding what to do and not..

melting, 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.

A lot of them are calcified. I softened mine when I stop the transdermals they harden again at least in the outer layers of the faulty tissue.

There seem to be different levels of how the body deals with injuries. At best it manages to restore the function by replacing/healing the injured tissue with the same material and components. The tunica needs some elastin along with collagen for example which is often missing in scars. The tunica also needs a certain alignment of it's collagen fibers which isn't there with scars.
Now if an injury is continuing to be "open" or inflamed the body might implement more severe measures like throwing calcium at it = calcification which is rather hard.

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.

So that's a big problem and hard to differentiate in giving advise. popopo faced that too reading his frustrations. It's totally subjective and personal.
Having the first answer in mind someone who is inflamed and is stretching the inflamed tissue too much(!) will possibly get a worse outcome cause the body will react alarmed by throwing more calcium at it. So in that case you rather would want it all to settle down and go from there. If you have a cut in your arm you don't stretch the skin apart. You wait for it to heal and then work the tissue if it healed too hard(scar).

That's why most docs say; WAIT and come back when something changes!
In a perfect world our docs would be able to diagnose were we are at and they and we could react accordingly.

I guess that most can and maybe should use VED or traction much earlier than waiting a year until everything is hardened. I personally would speed up any process with transdermals that fit the stage we are in. I'm not 100% sure on how and what when and where though, remember I'm no medical pro, just a guy reading and testing. All I can do is use logic and narrow down what might be the right thing based on what I know(not much but more than my urologist in Germany for example).

It's f**ing hard to determine what action to take and HIGHLY individual. You need to be your very own expert to do that..  
5 minutes of daily VED could result for some in a lot worse situation, for some is a waste of time and for some it influences the plaque formation in a good way. So test, dip your toes into the water and adjust accordingly.

I advise to everyone to use transdermal DMSO + ascorbic acid in almost any stage and case.(research DMSO!) Why? Cause ascorbic acid(vitamin C) is essential in almost every process and especially with the tissues in our penis(collagen), and the formation of healthy collagen, while being one of the least toxic substances around.  

[TonySa]

Or just follow the protocols that are working for many:  https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057