Creating Massive Pelvic Pain Awareness Campaign

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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by helenlegs 11 »

Well done Movin, good for you :)
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Violet M »

Movin, I posted a link to this on the homepage. Thanks for all you are doing!

Violet
Last edited by Violet M on Tue Sep 17, 2013 4:18 am, edited 1 time in total.
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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MovinCA
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by MovinCA »

Hi All,

Fundraising and creating awareness have been on my mind again lately. Not sure if I plan to walk in another 5K, or what to do quite yet, but wanted to see if anyone else has the desire to create a fundraiser. May 1st is now standing out in my mind since that is now our day for awareness. Speaking of which, do we have a color, ribbons, etc.? I haven't been on in awhile to see if anything had come of that.

Here are some inspirations that I found (other fundraisers, inspirational blogs, websites that made me think, etc.)

This One is for RSD...another syndrome (is PN/PNE a syndrome?) affecting the nerves...
http://www.quenchthefirerun.org/rsd-chr ... formation/

What a story...
http://www.gofundme.com/help-lisa-fight-pn

One of my favorite blogs...
http://pudendalpain.blogspot.com/

What? There's help in organizing an event? Wonder what that costs? (I haven't looked at it yet.)
http://w2promotions.com/public/start.php

Razoo has HOPE in their database already...create your own fundraiser and the money gets sent to HOPE (Razoo takes a tiny portion to maintain their company...but they are a nonprofit as well...and they're awesome!)
www.razoo.com

A little inspiration for all of you out there. Never give up!
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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MovinCA
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by MovinCA »

...here's another one...an individual fundraiser...

https://www.giveforward.com/fundraiser/ ... ef=1311699
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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Violet M
Posts: 6880
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Contact Violet M

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by Violet M »

Hey, welcome back, Movin'. :D How are you these days?

Would love to work on some type of fundraising with you although at the moment I'm working on several other things for HOPE from behind the scenes that I need to complete before taking on something else. I think if anyone wants to do a fundraiser that would be awesome! ;)

Violet
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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MovinCA
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by MovinCA »

Hi Violet!

Great to hear from you! Things are going well. I'm trying to balance keeping up with my PT exercises and my 9 month old. I feel very fortunate. Had a pretty bad flare recently, but never give up hope.

I'm going to be walking in a 5k for RSD for my cousin in December, and they have some really simple fundraising software that I may switch over to. Maybe I can actually organize an event. It sounds daunting, but with the experience I've gained, it may just be possible.

For those out there looking to start a fundraiser, I still recommend www.razoo.com, but www.activegiving.com seems to be another good one. Of course, get your approvals from the HOPE board, first!!! :)

Don't be afraid if you're thinking about a fundraiser. Feel free to send me a message and I'll be happy to help you make it approachable (although I may not respond to messages immediately. I work part time and have a 9 month old--yikes!). Small scale stuff works out really well. You can do something small, but advertise it on the web to a large audience...and then you've done something BIG! :) Let's raise awareness!
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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MovinCA
Posts: 21
Joined: Sun Oct 16, 2011 9:26 pm
Location: California

Re: Creating Massive Pelvic Pain Awareness Campaign

Post by MovinCA »

Sorry for all of the posts, but now I'm getting really excited. Fundraising software has come a long way in the past few years!

I'm going to do more investigating, but this sounds great so far...and free!
http://www.activegiving.com/technology- ... aising.htm
Fell on tailbone at the age of 10 (about 24 years ago) and sat differently ever since.
Diagnosed with PN in 2006.
Successfully manage symptoms and pain with physical therapy.
Experience painful flares periodically, often brought on by long car rides.
Successfully made it through pregnancy in 2012 and love being a mom!
Blog: http://walking4hopepn.blogspot.com
Donation Page (Fundraising Money Goes to HOPE): http://www.razoo.com/story/Walking4hopepn?referral_code=share
Twitter: @walking4hopepn
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