Let's All Bring Awareness to Pudendal Neuralgia and PNE

[shawnmellis]

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 The name of my group is Pudendal Nerve Entrapment to help bring awareness to PNE. You can also see PNE videos on my favorites list there at http://www.youtube.com/pudendalnerve You can also download my song on Itunes. http://itunes.apple.com/us/album/theres ... d456999676

There are multiple ways that 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
You can write and call magazine, health magazines, news companies, doctors, urologists, neurologists, post videos on Youtube, create blogs, 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
'

[Lernica]

Shawn,

It is usually not necessary to post the same message on multiple threads and PMs. One should do it. Most of us tend to read all the new posts.

Thanks.

[DoubleEdgedSword]

When I got this current bout of PGAD I had no idea what it was. I'd had two episodes last year but just thought it was arousal.. although I'd never heard of it lasting that long (2.5 and 3 months)..

This time it's already been 5 months and not showing any sign of slowing down. I contacted a cable TV talk show host about the problem and she is the one who suggested PGAD as my problem. I've had a lot of great help from her with regards to support and suggestions for my research to learn more about it.

Tonight her show will have a segment on PGAD and I'll be calling in again to chat about the daily trials this brings to those suffering from it. Her show is always interesting and informative and it's well-regarded, so hopefully this will spread the word about the disorder and let folks know that there are resources and support groups to help them through it, that they aren't alone, and they certainly aren't freaks, which is how I felt when I found out what I had.

I have asked her specifically to provide a link to this support group website so folks can have a place to be with those who share similar disorders. I haven't shared my 'problem' with family members.. There is a certain stigma or embarrassment because it would be perceived to be a sexual disorder, when it really is a nerve malfunction disorder. However I have several on-line friends with whom I can discuss anything and not be judged. I feel it's important for folks suffering from this to be able to reach out for some understanding when they may already feel isolated because of the embarrassment of it all.

By raising awareness of this disorder, I can only hope that more doctors and health care professionals will be able to expand their base of knowledgs and help those suffering from it.

[helenlegs 11]

Totally agree DES, the more pro-active we can all be trying to spread awareness the better it will be for those who follow us. Things are getting a little better already but there is still a way to go. I love the idea that a link can be provided from the show you mention.
I also find it ridiculous that you had the first inkling of a diagnosis from a TV presenter, although you may of course not have seen your doctor in the beginning about the problem. However with the lack of PN knowledge in the medical community in general I would not be surprised if she did know more anyway.
Is the show about sexual problems mainly?
Anyway thanks, I hope that some other people who listen to her can get an answer to their problems too.
helen

[DoubleEdgedSword]

Hi Helen,

You are correct when you assume I didn't see my doctor about PGAD last year.. When I had it first I thought it was like "Spring Fever" and it really didn't bother me too much because hubby was appreciative of the extra attention! LOL! Last Fall I had it too, but was so crazy-busy with work and a day off every month or so, I was too exhausted to even think about it, and it went away on it's own, likely out of boredom!

When I called into the show, she first thought it might be hypersexuality disorder (nymphomania) but I was able to email her and discuss some of my other symptoms, and she suggested PGAD instead.

After doing some research and getting a list of symptoms, and checking off virtually every one of them in my mind, I took the info I had found to my doc, and he was very thorough in asking me questions, taking lots of notes, and being open to suggestions that might help both of us discover what was happening. I was my doctor's first case, he'd never dealt with it before I walked through his door.

Yes, the show is about sexual problems and issues in general, and it's not only informative and interesting, but it's fun too. I think it's important for those who follow us to be able to go to their doctors and get some help. I know I was nervous and embarrassed to at first, but he made me feel at ease and for the first time I didn't feel like I was a freak.