New Ways We Can Bring Awareness to Pudendal Neuralgia/PNE

[shawnmellis]

Hi, I have a lot of GREAT ideas on how to bring Awareness to PNE. Let's All Bring awareness to PNE to bring better treatement for not only us but for those in the future that get PNE. There are so many ways we can all bring awareness. Here are some things I have done and thought about below. Please everybody add their own ways to bring awareness here at this forum topic

1. I wrote a song for people with PNE. Here is a link to my video and song on Youtube called "There's Always Hope" I'm not a singer, just a writer, so excuse my singing ability and try to spread the word about this song and video to bring awareness http://www.youtube.com/pudendalnerve My music artist name is Pudendal Nerve Entrapment to bring awareness to PNE.
2 also created videos about PNE/Pudendal Neuralgia with me talking about the Anatomy, Causes, Symptoms, doctors, and a link to pudendalhop.com at my YouTube Channel called pudendalnerve, which is also at http://www.YouTube.com/pudendalnerve
3. Feel free to also join my Pudendal Neuralgia Awareness Facebook Group I started at http://www.facebook.com/groups/251388951577830/
and my other Facebook Group to get instant chat support called Pudendal Neuralgia Hope at http://www.facebook.com/groups/25138895 ... 486362666/
Even a small group such as ours can have a HUGE impact on bringing awareness more than a large group can and that it is all a matter of how much PASSION AND DESIRE we have as far as how much awareness we can bring. I mentioned some ideas below
4. Create a clear decal for the car back window that says Pudendal Neuralgia or Pudendal Hope or something like that
5. we can wear leather bracelts that say PUDENDAL NEURALGIA AWARENESS or FIGHT PNE! and are adjustable to fit men and women and would be the same price as what I pay my manufacturer for them, which is $1 which you can see a picture of them at my Facebook Group to bring awareness called Pudendal Neuralgia Awareness
6. We can all email our friends or facebook request them to join the Facebook Awareness Group, Facebook Support Group, or the http://www.YouTube.com/pudendalnerve sites I made or the http://www.pudendalhope.com page to help spread awareness to friends, family, doctors, family and anybody we can think of especially our facebook friends
7. We can create an actual Pudendal Neuralgia Awareness Ribbon to show support
8. We can write an e-book and upload it to Amazon Kindle e-books and sell it for 99 cents. this costs you nothing to do, becaue I have done it 2 times before and can help anybody who wants to do it 6. We can make our own PN or PNE video and upload it to YouTube if you have windows 7 it comes with movie maker, which is what I use to make mine and it is pretty easy. Let's all brainstorm and everyone come up with at least 1 idea that you can do individually or as a group to spread awareness, becaue the more awareness that is broght to PN & PNE the better the treatment, the quicker the treatment will be for not only us but for those in the future. Let's all do this keeping in mind we may one day also stop somebody else from commiting suicide or stop another marriage from being ruined or another person's life being wasted for 37 years from this. Lets's All Fight PNE, in the words of a PNE friend of mine, Fight PNE!. There's Always Hope!

9.There are multiple ways we can all bring more awareness to Pudendal Neruralgia and PNE I saw that pudendalhope.com also posted a video on YouTube. Great job guys! We can all contact Dr. Oz or other media to have them cover this topic . You can contact Dr. Oz to submit this topic for his show at http://www.doctoroz.com/contact
10. You can write and call magazine, health magazines, news companies, doctors, urologists, neurologists, post videos on Youtube,spread the awareness about it on facebook, email, create blogs, websites, etc. Endless amounts of ways, but the bottom line, is the more awareness, the more doctors will be aware of this, the more surgeons will be doing this, the more research and education to the public and doctors there will be and the chances of better treatment and surgery options there will be. Everybody feel free to post their own ideas on how to bring awareness and to do it, but if you don't take a stand for bringing awareness to this in some way, then the longer it may be until treatment is improved. There's Always Hope!

Shawn
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[calluna]

I think I've just read this exact post somewhere else on the board? - Shawn, you may have cross-posted without realising it.

[shawnmellis]

Until the President or somebody famous gets it, it is up to us all to try to do all in our power to bring awareness of this to the media, public, and medical profession, which is what I am doing. There are many things we can all do to try to bring awareness. I have a facebook page at www.facebook.com/pudendalneuralgia I am on a support group on Facebook called Pudendal Neuralgia Support at http://www.facebook.com/groups/10383831 ... 838315764/ I talk with specialists, email past doctors my diagnosis, email dr. oz, and all I can . If we all did this, we might eventually be heard and this will be widely recognized by all doctors. I personally think this is not rare, but instead is usually middiagnosed as IC, prostatitis, or other. If you have not done it yet, I recommend getting a MRI of your pelvis with Dr. Hollis Potter in NYC, who has special software, requesting it with special attention to the pudendal nerve and its branches. Most with PNE get one done with her and her results have been confirmed in surgery. got one locally showed nothing, got one with her showed everything. a picture is worth 1 million words with this tough to pinpoint as far as exact location condition. There's Always Hope!
Shawn

[shawnmellis]

This may be the best way of all so far to bring Awareness to PNE, Here it is. One recent new great way, is by wearing a Fight PNE! badge on your Profile Picture for Facebook. To add this badge to your Profile picture on Facebook, go to
http://www.picbadges.com/puden​dal-nerve-entrapement/2347344 I also got my wife to add this to her profile pic, and my family and friends.
I also added the following comment for my new Profile Picture to let people know what PNE is below:
Please Spread awareness to my medical condition called Pudendal Nerve Entrapment by wearing this badge on your Profile. Fight PNE! To add this badge or learn more about PNE, go to
http://www.picbadges.com/puden​dal-nerve-entrapement/2347344

You can also get your Facebook friends to show support for Pudendal Neuralgia and you can show support for it by clicking the LIKE button for the Pudendal Neuralgia FB page at http://www.Facebook.com/PudendalNeura​lgia