Creating Massive Pelvic Pain Awareness Campaign

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Creating Massive Pelvic Pain Awareness Campaign

Postby pianogal » Thu Nov 25, 2010 1:46 am

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.

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.

ps- I see IC just started their first campaign this year. http://www.newswise.com/articles/view/569197/?sc=rsmn
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
pianogal
 
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Location: Orange County, CA

Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Violet M » Sun Nov 28, 2010 12:07 am

Pianogal, I love it when people brainstorm! I am working on #1 -- the sheet to pass out to docs. There is a letter to medical professionals posted already but I'm hearing that you all want something a little more concise.

I also like the idea of a day for pelvic pain and a ribbon. I've seen a butterfly used for the shape of a pelvis -- maybe we could use that idea and make it into a ribbon??
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby pianogal » Sun Nov 28, 2010 12:46 am

Violet, you are awesome!

Thank you for working on #1! yes, we need something concise indeed! I know some people who do great graphic design who might be able to help once the text is set up.

A butterfly is a much prettier symbol than a toilet for sure, and more likely someone will post it. That is great! I had no idea the pelvis looks like a butterfly, but I guess it does! Awesome!!! btw, I posted this in the social section too, so there is more dialogue there...l wasn't sure where I should put it.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
pianogal
 
Posts: 438
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Cora » Sun Nov 28, 2010 5:17 am

these are all creative ideas, and there is a woman on FB too who is trying to get a campaign going, and wants to do a video. It would be great to combine efforts. If you get a chance, check out the FB page I have or know someone with Pelvic Pain.

Great work, Piano Gal.. We should have you stretched out on the piano like that movie ... the one with Jeff Bridges... can't remember the name.

Cora
[color=#8040BF]Onset PN/PFD/centralized pain in Oct 06 after years of athletics,nursing career and dog training. PT for two years with improvement, now go for tune-ups and pain management. Stopped Cymbalta, was on M.S. Contin, then Kadian, and briefly Methadone for pain management, now off those meds and pain is well managed with Buprenorphine. Followed my pain management specialist.
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby kat » Sun Dec 05, 2010 4:07 am

I have a yoga type mat with thousands of spikes on it that I use for self acupuncture and it is pretty true to the feeling.
It is a great idea to have healthy people lay on it to feel what it feels like.
That causes pain on the outside and our pain is chronic on the inside, but at least they would get a small taste.
I love the idea, but know that my family members refuse to use it even though I use it for pain relief.

Healthy people are such babies sometimes.

Love your ideas though and the napathon is great.

I posted similar ideas on the social site if you want to check it out.

Loves and know I am finished the info packet to go to medical professionals and am sending it to the pudendalhope people in hopes that they can mass produce it as I am and handing it out to everyone.
I am making lunch dates with heads of chiropractic, PT, urology and OB buildings to discuss and hand out info so know I'm working on this as well.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby Mod8 » Sun Dec 05, 2010 4:30 am

Thank you kat for all your hard work in getting the word out on PN. You're awesome. Looking forward to reading your information packet.
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby mom » Sat Dec 11, 2010 3:27 pm

I am on board 100%.
I just recently posted a FB page that A'smommy shared. Lets all post something on FB. We need to raise awareness especially for children like mine that are being told it's all in their head!

I love this idea, let's make it happen!
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby pianogal » Mon Dec 13, 2010 7:55 am

awesome everyone!
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
pianogal
 
Posts: 438
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: Creating Massive Pelvic Pain Awareness Campaign

Postby mom » Wed Jan 05, 2011 4:17 am

Can we make a business card type page with the website info, and some of the Doctors treating PNE with their info.

Then we could just print it off, already formated, and then we could give it to our Doc's that are not aware. They may do some research if they had a specific site or look into some of the Doc' swe choose to list.


Just a thought
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Re: Creating Massive Pelvic Pain Awareness Campaign

Postby pianogal » Fri Jan 07, 2011 8:42 am

are you thinking the size of a business card? postcard?
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
pianogal
 
Posts: 438
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

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