Creating Massive Pelvic Pain Awareness Campaign

[mom]

business card... then we could cut them out or print them on business card stock and tear the perferation.. but then we would have something in hand to give.

[pianogal]

perhaps a business card would be more professional than a pamphlet? or we could have both? There are many companies that make business cards nearly for free too (vistaprint). And postcards for pennies. If we had a template that we created up here, then people could download it and print it themselves.

But we also need non-sufferers to be spreading the word. Our friends and family, when they go to the doctor.

It would be nice to have a professionally printed pamphlet and business card to give to docs when describing our condition. When they see professional graphics and printing, they may take it more seriously... although if they're like my husband, no amount of slickness makes him not a skeptic. But it would help some, more than an internet printout. It would appear more established and trustworthy.

[Violet M]

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)

Pianogal,

I've created a draft one-page description of PN/PNE. Could everyone please give their input and ideas. Eventually we could take this same document at turn it into a patient handout with anatomy pictures on it, etc.

DRAFT Revised HOPE letter to Medical Professionals Color.pdf

(88.4 KiB) Downloaded 368 times

Remember, we want to keep this as a one-page document so if you are suggesting an addition, please also state what you think should be removed to make room for your new suggestion. Thank you,

Violet

[pianogal]

Violet,
Thank you for creating a draft! Could you pm it to me or post it?
Thank you for being proactive!

[Violet M]

Sorry, I was adding it while you were typing your message. You can download it from the link in my previous post.

[pianogal]

Violet, it is EXCELLENT! More than I ever dreamed of!

I might want to add "history of constipation" in the history section, if you feel ok with that... as some people like me can't remember their injury, but usually remember that.

And add "Botox" as one of the treatment options so that when docs are asked to prescribe this they don't throw a fit.

Also I'd add in symptoms "pain with sitting, but relieved when sitting on a toilet seat."

THANK YOU FOR MAKING THIS! The medical stuff you added and the reference to the website makes it so official. Much better than if I'd made it.

[Violet M]

OK, I managed to fit those in without taking anything out. Whew! Here's the new version.

DRAFT Revised HOPE letter to Medical Professionals Color.pdf

(88.58 KiB) Downloaded 420 times

BTW, I should mention that in the last paragraph it states that HOPE is a tax exempt organization. We are registered as a non-profit organization but are awaiting 501c3 status from the IRS. Hopefully it will be soon and then we can go ahead and state this in the final version of the letter.

[Violet M]

Just noticed I should add "prolonged sitting" in the possible history.

[pianogal]

tax exempt non-profit = awesome!

adding prolonged sitting = yes!
(Should we also add "prolapse")
(and should we add "hysterectomy" or maybe even "vasectomy" ... maybe just "prior pelvic surgery")

also in quality of life aspect, would be good to add "Depression"
and in quality of life, should we also add this? ("Suicidal Inclinations??")

Violet, you rock! This will be done in no time and we can have it downloadable from the main part of the website... and people can print at home and take to doc offices. Also, with a little funding, we can print out on slick onesheets to possibly mail to people interested (logistics of financing this less certain: either sell them to patients for a tiny tiny fee or fund with donations)

Violet, may I say again, you rock!!!!!! Thank you for taking my idea and making it happen!!!

[Charlie]

I commend your efforts for raising more awareness for pelvic pain.

I think a major problem for awareness of PNE is the wikipedia page for pudendal nerve entrapment. If you type in Pudendal Nerve Entrapment into google it is the first article that comes up. Sadly the article tries hard to give the impression that the condition does not even exist.

There is a video on youtube about it.

http://www.youtube.com/watch?v=RgACZm_a ... er&list=UL

and also a thread on tipna regarding it.

http://www.tipna.org/forum/viewtopic.php?t=6909

I do not wish to court controversy but I think it is a valid point to make. This is a site for Pudendal Education which is a fantastic resource and support for patients. However the first article people see come up on google when they type in PNE implies that entrapment of the pudendal nerve does not even exist!

Many people trust Wikipedia. Some are not aware that anyone can edit it. I notice links to pudendal hope.info on the article are immediately removed as you will see in the history of the article.