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popopo

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Raising awareness on social media.
« on: April 01, 2017, 04:54:19 PM »

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.
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lessor

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Re: Raising awareness on social media.
« Reply #1 on: April 01, 2017, 09:38:33 PM »

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
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james1947

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Re: Raising awareness on social media.
« Reply #2 on: April 02, 2017, 02:12:52 AM »

popopo

This is the board for such a topic and it is sticky so will remain always on top :)
Lessor said:
Quote
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, ED, 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 8)

Wish you good luck
James
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Shankerbill

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Re: Raising awareness on social media.
« Reply #3 on: April 04, 2017, 08:05:18 PM »

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 ED 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
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skunkworks

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Re: Raising awareness on social media.
« Reply #4 on: April 04, 2017, 08:46:56 PM »

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

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Re: Raising awareness on social media.
« Reply #5 on: April 04, 2017, 09:44:13 PM »

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 "F^@% 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.
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PeetyPeet

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Re: Raising awareness on social media.
« Reply #6 on: April 05, 2017, 02:31:06 AM »

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.
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popopo

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Re: Raising awareness on social media.
« Reply #7 on: April 05, 2017, 07:21:31 AM »

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.
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PeetyPeet

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Re: Raising awareness on social media.
« Reply #8 on: April 05, 2017, 01:52:47 PM »

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.
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Stabler67

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Re: Raising awareness on social media.
« Reply #9 on: April 05, 2017, 08:16:06 PM »

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
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PeetyPeet

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Re: Raising awareness on social media.
« Reply #10 on: April 06, 2017, 01:32:53 PM »

Comment removed by request.
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Old Man

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Re: Raising awareness on social media.
« Reply #11 on: April 06, 2017, 02:41:05 PM »

Peety:

I am thinking about all those guys who are suffering with their symptoms of Peyronies Disease, ED 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
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PeetyPeet

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Re: Raising awareness on social media.
« Reply #12 on: April 06, 2017, 03:45:52 PM »

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 ED 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.
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Kertmccarty

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Re: Raising awareness on social media.
« Reply #13 on: May 06, 2017, 04:32:54 PM »

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'^+'ed 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
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zoli1995

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Re: Raising awareness on social media.
« Reply #14 on: May 23, 2017, 03:14:26 PM »

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