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[popopo]

Hi people, I'm thinking about creating an anonymous facebook page dedicated to the topic of masculinity, penis size, body image, sexuality and the way society affects us all. I have a very straight up view on these topics and I know people may not always agree with me, but I think if everybody would at least try and look at the world trough my vision it would probably be less of a taboo to discuss these things. It's about time men are no longer afraid to admit they have these insecurities in a society that's increasingly more vain and it's about time men talk openly about this instead of suffering in silence. I think the biggest struggle for us is that people simply don't care. There is no awereness it seems and men get told to just "accept" the issue instead of taking action. I'm from the Netherlands and you know what? I hear stories about women getting insurance money to enlarge their breasts because small boobs can cause psychological issues for these women. But at the same time I visit a lot of urologists and they tell me there is "minimal damage" (even though I lost loads of girth and 2/3cm lenght not to mention the awkward barely useable shape) and there is nothing to do about it. No doctor agrees with pentox, cialis and VED (at least not the "experts" I spoke to) and they quite frankly dont seem to care. No, instead of treating my disease I get diagnosed with BDD at the age of 17. Why? Because I shouldn't try to fix the issue. In their opinion I should learn to just live with it, but my physical issue is still progressing and no action is taken to stop that. What bothers me is the fact that instead of accepting that there is something wrong and trying to help they tell me it's mainly psychological. Why? Because it's not peyronie's that's caused my depression, it's the way I cope with it. In other words, from a psychiatrists point of view you can live in the worse conditions and still feel good by learning to cope with it. But this doesn't reallt fix the issue now, does it? And THAT is why I wanna raise awareness.. It's not "weird" to want to have a good dick, it's not weird that you want a healthy sex life and it's also not weird that this issue affects your confidence. What's a man to do? You cannot "think" your good sexlife back, you cannot "imagine" haveing satisfying penetrative sex, you can not "delude yourself" into thinking your dick is fine when it really isn't. I hope people will understand my point of view and maybe people can even relate to what I'm saiying here. If I start the facebook page or blog I'll give a heads up to all the people interested and I'll try to get as many people to follow me as possible. I don't expect too much, but I also do not underestimate the power of social media and if  I convince even one person into better understanding my thoughts and the way I see things I would be glad. Let's see how far my message will spread and let's hope people will care.

[lessor]

Totally agree with you and with each of your words
The attitude of many doctors with these problems is simply pathetic, "live with it" wth!! Would have to break the penis to many doctors and then tell them ahh live with it
Also totally agree with you too in the women´s part and their breast, if we lose size with peyronies or with implant it is not important but with the women its the opposite
Buddy you have all my support with this

[james1947]

popopo

This is the board for such a topic and it is sticky so will remain always on top
Lessor said:

Totally agree with you and with each of your words

My self also totally agree with you and with each of your words.
Regarding the doctors, if they will have lost (like me) 6.5 cm (with years of VED got back 1.5 cm so the lost now 5 cm) and 1/2 of the girth, awkward shape, Erectile Dysfunction, I am sure they were thinking different.
And don't forget, in the modern western world, woman are the privileged, man remained with nothing

I don't know how old you are, but I just want to warring you that such a blog or face book page is a huge time consuming and you should be ready to dedicate many hours per day, for weeks, months and years. And is very tiring and sometimes frustrating also.
I was for a few years very active moderator on this forum, so all the above warning is based on personal experience.
Maybe you don't know, but the administrator (Hawk) that started this forum is very rarely on board and all the moderators that started with him are all gone. And they are people full of eagerness to work and to help with Peyronies.

If you will make a blog and you will want someone to help, you can take me in consideration.
If you will make a FaceBook page, forget about me, I have no FaceBook and will not have. I am a cave man and don't like to be naked in from on billions of people

Wish you good luck
James

[Shankerbill]

I agree with these words too; it is a good idea popopo. James, I am pleased you will make the topic 'sticky' so it remains on top.       I have had this wretched thing for almost six years and mentally it's like trying to walk up the down escalator never getting near the top but constantly sinking to the bottom.
The first NHS (UK) Urologist I saw after waiting many months for an appointment diagnosed 'Classic' peyronies. Having ascertained I was hetero he then went on to say if I were part of the gay community the need for a corrective procedure would be more pressing as it is usually less psychologically destructive to heterosexual males. A totally pointless distinction which I understood to imply there was nothing they could do and I would have to go to the back of the queue and suffer or go private. (Reading the posts on this forum, it is clear peyronies and Erectile Dysfunction are devastating to any male whatever his sexual orientation.) That was my first 'wake-up' call to the ignorance over this disease in the medical profession.           
A short while later I was at a party and overheard a group of girls talking about the TV program 'Embarrassing Bodies'. One episode was about a fellow who had peyronies. They were laughing themselves silly about his bent little willy. I didn't find it funny at all! I think you can only have some real understanding of how devastating this disease either as a sufferer or partner or some close association. Through social networking that could translate into a significant community and an increased lobbying voice. SB

[skunkworks]

The problem is Facebook is not anonymous, and I very much doubt you will ever get participation there because of that.

There is a Reddit page - https://www.reddit.com/r/PeyroniesDisease but it's really just studies etc about Peyronie's. It's anonymous though and Reddit is a very high traffic site so maybe that would be a better place to post personal stories and treatment experiences/information. 

[popopo]

Yeah it sucks. These are the things that stick with me. The constant reassurance that I'm not a man. The way little teenage sluts talk about this stuff makes me choke, but it's all the more reason to either rise above it or go out in style. I cannot imagine myself saiying "[email protected]< the modern world" when I'm dead which is why I'm stuck with life haha. And I totally get that part about walking the wrong way on an elevator, I've been "addicted to weed" for years now, but honestly.. I smoked on and off en even though I do have dependency, it doesn't matter much. The only reason I keep coming back to the ol MJ is because I got too much time to kill. Gotta wait for a solution. I'm 22 so maybe I should just grow up but for now I feel too angry and frustrated to continue without physical help.

[PeetyPeet]

I think raising awareness at a societal level will have a positive knock on effect on the amount of research dedicated to the disease.

The problem is Facebook is not anonymous, and I very much doubt you will ever get participation there because of that.

I fully respect people's right to privacy and anonymity, but I also think when it comes to raising awareness there's going to come a point when people will need to go public.

Not that there's a conspiracy, but it is to the advantage of all the unsympathetic clinicians out there that no one will talk publicly about their poor treatment due to the personal nature of their condition and their need for anonymity. It is a shield for them to hide behind and do whatever they like with little scrutiny.

There is public peyronie's support group on fb if anyone is interested. 61 members.

[popopo]

Exactly, we will need to make this go public but I also checked out the facebook page that already exists. It has the profile picture of a small bent penis.... WTF?! Are you kidding me?? Of course it only has 80 followers. I'm not saying I will do better, but shoving people a pic like that in the face will scare them off running, even I won't join a site like that with my own profile... No, what I wanna do is gradually open people up to my thoughts about all kinds of topics, but mostly targeted towards masculinity, double standards, penis size, etc. etc. but in a non-graphic way. The reason people don't give a crap is because they cannot associate with us. The last thing I wanna put on my facebook is the actual view of a scarred penis, who want's to see that? Really? I can't even blame people for thinking things like "ehmm... gross...." and move on. I just hope I can open some minds in a more subtle way. Life, Death, Attractiveness, Suicide, politics, sexism, idiotic third wave feminism. THAT'S what I wanna talk about. The goal is to create a page where you can share your mind about a lot of topics without being judged or told to "be positive". Just straight up no-BS talk about life in general. In short I wanna highlight the "animal" part of us, if you get what I'm saiying. If we can see ourselves like the animals we are our perspective on a lot of topics will be different. I have a few harsh opinions, like for example, I think people should have the right to go to the doctor and ask assitance on commiting suicide. In a time where the planet seems to small for all of us it's important to end the suffering of some people who will never recover. Sure, people will tell you people who wanna die do it anyway, but what if the person becomes so fed up he kills others too?? Another development I do not really like is how women get empowered and men get less dominant it seems. I don't think men should be above women, but it's ridiculous that some women are still fighting for "equality" but we ARE equal. We're NOT the same, but we are equal in all western community and women should be THANKFULL that she has the freedom they always fought for, but NO it's not enough. Barbie should change and what not.. WTF?! What about HE-man and batman and dragonball z. But if a man even complains about it he displays weakness and is percieved as a lesser man. This is a tip of the iceberg, but I could write about this stuff all day. I already created a facebook profile, but not a page yet. The profile name I picked is Jason Kruger (Why not combine two awesome names that are already taken anyway haha) and my profile pic is La santa muerta (lady grim reaper). I have only uploaded some basic info as of yet, but befriend me and you'll see I'll soon upload a shitload more haha.

[PeetyPeet]

The FB group I found has a stock image of a man and a woman....I suspect we're looking at different pages. But I agree, careful consideration needs to be given as to how any public awareness campaign is presented. Graphic images from the outset aren't the way forward, however I do believe diagrams and honest images will be necessary at some stage, so that people can understand. As with this forum, all such images should be kept in a particular location and viewed voluntarily after warnings. BTW has the PDS ever considered making an FB page?

The key to raising awareness is to let people understand the impact peyronie's can have physically, mentally and on life in general. That means some honest life stories from sufferers, anonymous or otherwise.

You're clearly very motivated and I think that's great. You're also quite frustrated, as are we all. Promoting the cause is paramount but I think it needs to be done in a way that is not perceived as attacking others. That could potentially alienate and put people off. You mentioned societal bias towards women. I know some women who would disagree with you, but I see your point that in some ways it can feel like it's swung too far the other way. You may find your greatest ally is a feminist who sees you breaking down the masculine stereotype by being honest about your condition. Most feminist women I know also have disdain for the 'batmen' and 'hemen' out there.

Good luck with your page. I'm not sure I'm ready to befriend anyone on facebook yet as that would allow access to all my personal details, but I could well like a page.

[Stabler]

I think that a reputable FB page for Peyronies is a good idea however, FB is not anonymous like our forum, you might lose the point of your page by unfavorable postings on it by people who do not have Peyronies. You would need to make sure you monitor it continuously so that it didnt become a place where posters just thought it was a place to talk about sex and not Peyronies,  you don't want it to become a "sex page"

The members of this forum post their stories freely because they know that they can do so and no one will know who they are, FB will not be that way so keep that in mind.

You might consider making the page to just be an informational page, one where no one could post publicly, that however would mean you would need to be the one to update the page on a regular basis.

Just some things to things about

Stabler67

[PeetyPeet]

Comment removed by request.

[Old Man]

Peety:

I am thinking about all those guys who are suffering with their symptoms of Peyronies Disease, Erectile Dysfunction and the ability not to even be able to achieve erections. Much less having to deal with difficult personal relations with their spouses, girl friends and any significant other.

Speaking from my personal experience with the subject of Peyronies Disease and other sexual problems, I definitely would not want to "air my inability to perform sexually" to anyone on an open forum like the Facebook. There are many problems with that server/network that definitely turn me off from even thinking about joining.

So, I have spoken my piece on the matter and definitely will not change my mind about it. I will leave the forum for good if it decides to join activity with that server/media.

Old Man

[PeetyPeet]

Hi Old man, please be reassured, I agree with you completely. I would also not want our forum on a social media platform. I certainly wouldn't dream of discussing my own personal experience with Erectile Dysfunction on facebook. Not a chance.

I was inspired by such organisations as 'Cancer Research UK' who do not have a forum for sufferers on facebook, but they do have a page which they use to advertise initiatives, charity events, significant articles, and in doing so they raise awareness and keep cancer research topical. Obviously peyronies is not so well known, and currently there isn't much happening very quickly research wise so one would run out of things to post pretty quickly , but it was just a thought I floated here for discussion purposes.

As I say, I would not want to jeopardise forum users' rights to anonymity, privacy and safety in any way.

[Kertmccarty]

I read and think why doesn't another more prominent organization like "Cancer sucks " etc step up and help us guys that are so frustrated because of this f'~c<+d up disease to get awareness out I just got my first cycle April 24 and 26 after a long battle with the insurance company because this is a disease and major medical should cover the treatment it possess me off when women get a lump or dark red menstrual cycle they get what ever it takes for them to get better and some insurance companies will pay for women that have had Brest removed get new ones put on that's why I wish a woman group would help the Heman that they want out Im doing my best to talk to people about it and I'm over embarrassment Souly because of the great love I have from my wife I know it's hard for her but she's also talking to other women to get them informed because this is such a rare disease or rarely talked about diseases maybe if there is another women telling another woman that this crap can happen maybe It will spread by word of mouth like it use to be before FB or any other social media platform But I know all of it helps we just have to keep talking about it until we are heard and Why can't us guys talk to our friends if they judge well there not much of a friend that's how I see it Guys don't be embarrassed if you had Kidney disease would you be embarrassed NO so talk to your best friend so they can talk to there sons and maybe we can get this out there and stop or get control of this disease We didn't ask for it but we got it so now we need to start talking about it

[zoli1995]

As for the media content (images, videos) you could probably use the representation of fruits or other objects

[Tychy]

We maybe could also look towards Twitter. It's a bit more anonymous and the people are usually more open posting questions. I had the idea of preparing infographics we could spread. Maybe I find time to do that soon.

Edit: So, I got @peyroniesaware ( https://twitter.com/peyroniesaware ) for the time being. We can talk about the profile picture later Have to work now.

[Toronto34]

Good idea, Tychy. The questions now are what kind of content is posted on that twitter and who decides?

[Tychy]

Well, I should be able to manage that, as I'm already using twitter regularly. I also did not include a direct association "made by..." to keep it legally separated (should bring no trouble). After all it's non-profit. I think it's also possible to give multiple users access using TweetDeck. I'll check that later.

For the content I would stick towards facts, studies and informational pictures ("what is peyronies", "what are common treatments", "how is it affecting people"). We should then sync this on a common vote with the potential Facebook group / site.

I think this should increase the visibility of the topic quite a bit. And that's the only reason I'm volunteering to do this

[csm101]

Love the idea...I support that...

[LeviaThoN]

I think its a great idea. I have been following some of the content posted on line and this is the second video I have seen posted by the International Androlgy guys in London.  Link deleted by moderator Interesting

[LeviaThoN]

Also saw this one - they are posting a lot of videos Link deleted by moderator

[james1947]

LeviaThoN

From 5 posts, 4 have links to:
International Andrology/London Andrology
For me is strange!!!
Do you have shears in the company?
Do you have Peyronies? You didn't wrote nothing in your 5 post regarding what is bringing you to the forum

James

[zoli1995]

Lately I have been seeing a lot more posts concerning this disease on social media, such as from The Independent: Men with curved penises have greater risk of cancer, finds study | The Independent

[Paolo]

Thanks zoli1995 for posting this, very worrying though.

[ethanolmos]

It would be great to rise a bit money and have a promotion in something like in Instagram. I have a service in mind [link removed - Admin]. It allows getting new followers based on geolocation and automatically writes to them. It adds 2000 a day in average. So keep your eye on it.

[Sorry, your first post here and is to a site to raise money. Maybe have good intentions but seems strange - Admin]

[swiss]

Social media is VERY pay to play. Would be nice to have a little donation box or non-profit for Peyronie's disease, in general, I have been thinking about this for a while since I have the media related skills to make something happen at a high level, but nothing has struck me as inspirational or visionary.

[DELETED]

Until some of desperate patients who suffer of Peyronies Disease going to mass shooting with suicide note in pocket, explaining motivation for this action, it's all doesn't make sense. Then yes, it will make sense in society. Also, if you want "raising awareness" you need to spend hundreds of millions for marketing and years of work on this field. Apple spend billions for marketing to sell this plastic piece of crap.

P.S. Who knows, maybe Stephen Paddock have had a Peyronies Disease?

[Oh Boy]

The fact that you talk about mass shootings to raise awareness for Peyronies after 17 INNOCENT children died yesterday from one is sick. I don’t care what anyone says but if you really think that’s a way to solve this problem then you have issues. He’ll even if you said it as a joke you’re still sick.

Really why should anyone have to suffer just because we do. No one should be effected by what we go through. Over obsessed with their dicks. For the love of god if a cure for Peyronie is found tomorrow most men of this very form will make a full 180 and start messing around and trying enlargement and injury themselves again.

To hell with all this crap! Why you guys waiting for cure? Sitting down hands between legs crying like a baby. This forum has a couple thousand members. Why not come together and work side by side with some of the top urologist to make something happen.

[Paolo]

The fact that you talk about mass shootings to raise awareness for Peyronies after 17 INNOCENT children died yesterday from one is sick.

Really why should anyone have to suffer just because we do. No one should be effected by what we go through. 

To hell with all this crap! Why you guys waiting for cure?

AlexSamo, Please do not post content that can only upset the majority on this forum, it does you absolutely no credit whatsoever.

Oh Boy, others do suffer because of peyronie's, it drives a wedge between your spouse, and the effects of it.
Why are we waiting for a cure, most aren't, we are doing what we can and waiting for science and medicine to catch up.

Both posts are extremely negative and can only put off guests from registering here, please be mindful of that in future please 

[Oh Boy]

Paolo

Yea you are right that Peyronies can effect spouses to some degree but nothing near to the extent people on this forum give it credit to. Last year I was seriously depressed due to my situation and I couldn’t focus on anything. It won’t be a surprise to say that I ended up loosing my scholarship at my university. But the thing is this; do I blame my condition/situation or I blame myself. The reality is that it was my fault why I post my scholarship. If i just sat down and studied for an hour more I may still have it. I was depressed yes but in no way shape or form will I blame my bent penis on me loosing my scholarship. It will be the last thing I blame it on.

Now a scholarship and marriage are two very different things but it’s the same concept. Throw the blame on Peyronies yea that’s the reason your marriage failed when in reality I could have probably been your fault. Okay let’s say that you did EVERYTHING and your marriage still failed then thank Peyronies because that’s not a marriage you want to be in.

Now talking about “waiting for cure”. I guess I should have been more specific. Some members of this forum are doing everything they can and I see that. But that's only talking about some members. What about the hundreds of guest who hide and do contribute anything to the situation? Taking a backseat on the plane yea. Look at some of them at most times the out number members 10 to 1. How do you think we’ll ever make progress like this. How many people here are willing to stand and say I have a problem and it is Peyronies? When they won’t even join an anmomynous forum.

Two posts won’t stop them from joining it’s their own pride.

All this being said I see some very positive recent movements here which makes me happy. E.g. NeoV YouTube videos being the highlight. I watched some of them even though they have nothing to do with me. I would love to know who the owner/owners of this forum because I have some ideas of my own.

[DELETED]

Sorry guys, but the real world is very cruel. Nobody gives a f*ck about people with diseases or peoples with bad genetics, cripples, etc. It's all or nothing. As for my post, well, I'm sorry for insulting your feelings, but let's watch an example of major changing in mind of society, for example, everyone remember 9/11, it was a day that changed modern world and if before 9/11 major part of people was very tolerated to some of the religion (don't want to name it, you're already know what it is), after than, people on western countries totally changed their mind about this. It's very sad, but society can change collective mind only after some of the shocking events. If people lives in life full of hedonism and don't even think about others who suffer from any kind of disease or who were born as a cripple, why they need to change something? They're better eat junk food, drink soda, watch stupid TV shows and browse funny videos on youtube on their iphones. And you all know that I'm right, but you can't say it because of total tolerance. Very sad.

[Oh Boy]

Alexsamo

You are right to an extent. Lots of people care about breast cancer. Well breast cancer will kill you so it shouldn't be directly compared to Peyronies, but it got to the stage its at because of all the awareness their community drive everyday.

This comes back to my previous point; how many of us will put on blue peyronies shirts (I like blue so I'm saying blue) go into a mall and speak with people at sight raising awareness? Now It will be better if wifes, mothers and girlfriends came with us so that it looks like a group instead of a bunch of suffers. Make a movement everyday.

My views remain the same but I too will like to apologize to anyone I may have offended, I never meant to.

[LWillisjr]

So let's stay on topic. I would bet there are a lot more here that will wear the "Blue Shirt" thank you think.

[Sleepless]

Hi All,

I think we should also be change agents. 

https://clinicaltrials.gov/ct2/show/NCT03240822
https://clinicaltrials.gov/ct2/show/NCT03463239

Have a look at those clinical trials.  Wake Forest University, for the better part of 3 decades has been developing this technology.  The FDA, which is designed to protect citizens, is in this instances causing a huge lag.  I suggest we support their work, write our politicians and lobby them to support this university and Dr.Anthony Atala.  Petition the FDA as well to accelerate this process.

https://www.whitehouse.gov/contact/
https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?FR=10.30

Cheers

[james1947]

Sleepless

Can you give us more information about yourself? About your Peyronies?

James

[Werther]

Does anyone want to sign this petition as suggested by Sleepless?

[james1947]

First post of Sleepless and he is organizing already a petition against the FDA!
We even don't know if he have Peyronies, connected to Dr.Anthony Atala or else.

James

[Werther]

Who cares if this idea was posted by a newbie whom we know nothing about. It's the idea itself that matters. Don't you agree?

And by the way this would be a petition TO FDA, not AGAINST them.

[Hawk]

I tend to agree with Werther but it is curious that the only post from someone with a Canadian flag is directed at the FDA in America.  I have not even checked these links but will check them today.

If Sleepless is from Mars, or whether he is a brand new member, however, is not the point.  The point is the nature of the petition and whether it is a good idea on its own merits.

[hope794]

Just tell me what you got on mind and i'll totally support you guys. I'm sorry i am not actively helping too much, but i can try to spread the word as much as i can. My english is not great and i would never be able to create something like a letter to FDA.
Keep me updated.

A big hug brothers.

[james1947]

Sorry I don't agree with you all.
I am following Dr. Atala developments from the first time his name was posted on this forum.
It is not the FDA that making barriers to his progress. It is his very slow progress, without going into details.

James

[Werther]

How do you know that this slowness is only due to the process itself? Have you been working there in the last few years?

In case somebody forgot, WFIRM has receveid millions literally from federal grants in order to develop this and other regenerative medicine procedures. Even if the US governement, the FDA or other public agencies involved aren't actually causing any delay I think we should let them know that this procedure is taking forever to go further; if it's WFIRM's fault, they could withdraw their funds and give them to other Institutes that will likely use them profitably.

I don't see any good reason why a petition shouldn't be signed up for this.

Anyhow this would be directed to the FDA and the White House (at least based on the links provided above), so I think that US citizens should make the first moves if we actually want to do anything with this. Then I'd be glad to help in any way I can (and I hope others will too).

I sincerely hope that this thing will develop further someway and that it won't remain a dead project like every past one that I've seen here.

Thanks in advance to anybody who's willing to help.

[DELETED]

The major question is: what can we do to speed-up this process?

[hope794]

American men: PLEASE do something. As Werther said, since WFIRM's project is totally USA based, you guys should and "must" act first. If the project was based in Italy, i am totally sure that all the italians here would have be the first to act. I know it's not easy, but many of us don't know literally anything about USA, many others don't have a proper use of a correct english, and honestly we are not american citizens so we would never be able to write to the government and ask them to say to WFIRM to speed up, since we didn't pay a single penny of taxes. You pay taxes, so YOU have to get angry if they take 50 years to do something.

You have got all our support, if there's any petition to sign, any donation to send, any need of "guinea pigs" for the trials, i bet that you'll find hundreds of men here.
This can be done.

FOR HAWK: Bro, even if you're out of Erectile Dysfunction and Peyronies Disease, why don't you begin something like this? You have the authority, since you're the "creator" of this huge website, to do this. Furthermore, you're not "young" like us and your word will be considered more than ours. It's hard to say, but every government usually does not give a f**k about under30.

[TonySa]

Great ideas hope, but the people have essentially no impact on such funding. ☹️

[Werther]

Are you kidding us? We're talking about public funds and you're saying that people have no impact on these? I didn't know that USA were indeed a monarchy...

[james1947]

Werther, Hope, etc', you are young capable people, why you are not doing what it suppose to be done according to your opinion?

Go ahead, just do it

James

[Noway]

social media is all fine and dandy but more men need to start going to there doctors and talking about these issues because doctors need to report the number of instances this problem comes up then it becomes more of an issue to them and the health board and it will become a top priority on research to find a fix.