Creating Massive Pelvic Pain Awareness Campaign

[pianogal]

I want to start a discussion on starting a Pelvic Pain Awareness Campaign that will CREATE AWARENESS and thus change the future for our children so they don't have to suffer and be misdiagnosed as long as we have.

(let me add... this is intended to help men and women who suffer, just to clarify)

Here are my ideas thus far:
1- Create a One-Sheet describing quickly PNE, Vulvodynia, and IC (symptomology, possible cures)
2- Get friends of PNE patients who are HEALTHY to take this One-Sheet to their ObGyn doctors and Regular Doctors when they get their Papsmere, and talk briefly about creating awareness for these conditions so that less people will be misdiagnosed.
3- Create a Day for Pelvic Pain, with a Ribbon (shaped like a toilet seat?)
4- Create a Napathon! Instead of a jogathon, the longer people nap or lay in one spot, the more funds generated. Can occur at any park or beach.
5- Get publicity and make it "cool" for healthy men and women to support other hurting women and men by taking this info to their practitioners. (just as women work for breast cancer who don't have it.)
6- Create slogans: "Hoorah for Hoo Ha's" 'I'm not ashamed anymore." "I don't wanna sit" (ideas?)
7- Get testimonials of people in pain, describing how it hurt their lives emotionally and physically, in video format, and some sort of television presentation.
8- Make a T-shirt of a wooden chair crossed out.
9- Have press photos of women and men lounging on sofas looking beautiful, with words below that read "I'm a couch diva who wants her life back." "I may look relaxed but I'd die to get out in the world again."
10- On Facebook, they had a "what color bra are you wearing" thing going around to help breast cancer. We could do something similar with Panties, Boxers, Briefs...
11- I realize these ideas need some refining... just starting the process here...

If we can get over our shame we can help future generations not have to go through our HELL for as long.

Doctors need to be educated, and if we start this from the grassroots we can still have an impact.

What do you think?

oh, one more idea... if only people knew what the pain felt like, they'd want to try to help. How about a spiked thing for people to sit on? maybe this is too mean... and we might get sued for injuring people. lol

ps- I see IC just started their first campaign this year. http://www.newswise.com/articles/view/569197/?sc=rsmn

[Karyn]

Sunil,
Maybe you should read it again:

5- Get publicity and make it "cool" for healthy men and women to support other hurting women and men by taking this info to their practitioners. (just as women work for breast cancer who don't have it.)

9- Have press photos of women and men lounging on sofas looking beautiful, with words below that read "I'm a couch diva who wants her life back." "I may look relaxed but I'd die to get out in the world again."

I don't think Pianogal purposely left out things that would apply only to men, such as postrate problems and ED. She was merely starting the ball and asking for suggestions from others. I read this post as a group project, where all forum members may contribute. Maybe instead of "throwing up on her idea", you could contribute in some positive, helpful way.

Pianogal - I'd be happy to work with you on this. It sounds like a fun, productive project!

oh, one more idea... if only people knew what the pain felt like, they'd want to try to help. How about a spiked thing for people to sit on? maybe this is too mean... and we might get sued for injuring people. lol

LMAO!!!! As you know, the holiday season is upon us, and with that brings visiting. And what's the first thing people offer you after entering their home? My bottomless pit of patience and compassion for those who don't understand how excrutiatingly painful it is for us to sit has long since dried up. I'm nothing but annoyed now, when I've explained over and over again, for YEARS what it's like for me to sit. In addition to everything else I've got going on for myself, I developed sit bone pain after my last nerve block in June.
Never went away. While highly uncomfortable, it truly is the least of my problems, compared to the nerve pain. But the sit bone pain feels like I'm sitting on sharp, pointy rocks.
Before you even posted this, I was seriously considering sacking up the 4 fairly large, beautiful, jagged pieces of pink quartz I have and bring them to visiting with me. It was (maybe still is! ) my plan to place them on a chair/couch after being told to sit and say, "You first!"
Warmest of regards,
Karyn

[pianogal]

Hi Sunil,

It is my intention to have this help both MEN and WOMEN and to address BOTH issues. Please don't throw up on it. See how I mentioned men and women all throughout the article... men get PNE! apologies if I did not include enough men's references (i added a clarification at the top too after your post), but that is why I created the dialogue... I know having this condition it's hard to have the time to sit to read things thoroughly so I have no hurt feelings from your post, only empathy... and let's change this for the future so less men and women ever have to suffer like we do with this terrible condition. Shall I create a tagline for men? How bout... "Whee for Wangs!" "I don't sit cause it hurts like a big s**t!"

Karyn,

I love the idea of bringing a bag of rocks for people to sit on. I will have to get one! Awesome. I too am sick of being offered chairs, even by doctors after you tell them it hurts to sit!

and thanks for clarifying my previous post, for backing me... I know Sunil probably was just hurting to sit and didn't see those parts, so thanks for bringing it to the surface.

Everyone,
Please add ideas. I am only one pne sufferer, together we can get some ideas started and it may need to be when I'm well that I follow through with this, or maybe I will be so fed up I will start now... but I am so fed up I feel driven to do something about this... maybe that's why I had to suffer 8 years already.

[A's Mommy]

Pianogal,

You know my feelings on this. I'm all for helping you create more slogans. However, my hubby wants the one he created trademarked.

LOL

Love you all.

Happy Thanksgiving,

AM

[pianogal]

AM, we will make sure your hubby gets royalties on his slogan for sure. lol

[Karyn]

Hi Sunil!
I'm so happy you came back! Please understand that the people you're communicating with in this group are here to support, encourage and provide you with information. I consider you a very valuable member. We've come together because we're ALL in pain and most of us have also been treated poorly by the medical community to some extent. Male and female alike. PN(E) is not gender specific and we as a group have had our own personal, monumental struggles. The HOPE group is unique in that we truly do understand the pain each of us is going through and we can relate to the way this condition has changed ALL of our lives. I'm so very sorry for what happened to you in the past. The way you've suffered and the way you've been treated. But HOPE is your safe place. This is the place that you're sincerely cared about and understood.
How very encouraging and exciting that Dr. Dornan wants you to write a paper! What a perfect tool for getting the word out! Maybe not just for PN(E) but for any condition that is poorly understood and often misdiagnosed!

But I think what the summit missed was money should also be allocated to do research to find treatments and cures.

I couldn't agree more. I was actually told by Dr. Conway that one of the reasons many aren't aware of our condition is lack of funding. He also said, "there's no money in chronic pain". So, here's my suggestion for creating a massive pelvic pain awareness campain ... we need a cash cow!
We need someone with clout and high visibility/credibility to promote us. I read in the discontinued forum of letters to Oprah and Dr. OZ. I think I even read a thread of an unsuccessful attemp to contact the TV show "Misdiagnosed conditions" (or something like that). Maybe we should revisit again? If taken seriously this time, we could be sporting our nifty t-shirts with the wooden chair crossed out?!?
With love from your friend,
Karyn

[nyt]

Pianogal this is a wonderful idea. Just one of my thoughts from reading you suggestions is that this campaign is really about a one condition that falls within the pelvic pain category. Individuals with pain with their menses have pelvic pain but they can sit. IMHO I think this should just focus on PN/PNE.

I watched all the videos from the IUGA international meeting (see forum thread on Dr. Beco's presentation for link) and Dr. Beco believes the incidence of PN could be as high as 1 in 20 individuals. So much for this being a rare condition if he is correct. He believes that individuals with urinary urgency and frequency problably have PN, that is why he recommends bilateral surgery with individuals with these symptoms.

[pianogal]

Sunil,
Welcome back! The hot coals idea is tempting... can we add electrodes to create electric shocks too! lol
The summit's article's portion on neuroplasticity was interesting... perhaps some of us have phantom pain... ouch!

karyn,
yes, we do need money backing it... but a grass-roots campaign is free and things do spread virally these days thanks to Facebook, Twitter, Youtube etc... so it is possible to have a huge impact with the right marketing ideas, as long as they are very interesting to people...

or.... I will try my darndest to get famous so we can have someone with clout represent us... lol ... if I were famous I don't think I'd want people to know this about me... but maybe that's part of it, getting over the shame of it...

nyt,
yes, perhaps it should just be Pudendal issues... for the sake of clarity. I just didn't want to leave anyone out and thought the campaign could have a bigger swing if it encompassed more... but that is difficult... perhaps pne will have to be the focus, as it should.