A Call for Stories

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delaney
Posts: 3
Joined: Mon Apr 09, 2012 6:56 pm

A Call for Stories

Post by delaney »

Hello,

I am a person who knows the pain the nerve pudendal presents. There is more written knowledge today about the complexities of this nerve and the host of problems it presents than ever before; due in part by doctors trying to find solutions, and from patient advocates.... but there is still more knowledge that needs to be reached.

I would like to contribute your pudendal stories in collaberation with knowledgable medical doctors in the realm of the nerve pudendal. I believe it is important to have first hand stories voiced through pudendal patient's themselves. These stories will further educate health professionals, the public, and the general pelvic pain population, to bring about an acute awareness of a very real illness.

I can't guarentee publishing, but I'd like to try by establishing true account stories. Your names will not be used in order to protect identities. You can email them directly at reneew@sleepyeyetel.net. In this way your stories remain confidential. Tell me your gender, present age, and the state ( no city) or country where you live. The published stories will "not" contain your names, but please sign your real names at the bottom of your story along with: I grant permission to publish my story in any form.

Tell me at what age your symptoms began and if you know how you aquired pudendal neuropathy. Tell me what you have dealt with and are now dealing with. Have you had surgery, what type, was it helpful? Anything...just tell your story.

Thank-you!
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
Contact:

Re: A Call for Stories

Post by Amanda »

WElcome Delaney

Its great to see that you are back again on our forum....I know you from many years ago and know your plight through this cause...I recognise your publishing records in other areas.I will send you any information to provide you with some info to help this great cause.
I am so glad to see you bak on the pudendal nerve forums again.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
delaney
Posts: 3
Joined: Mon Apr 09, 2012 6:56 pm

Re: A Call for Stories

Post by delaney »

Thank-you Amanda. I need your stories...please don't let signing your real names for consent deter your responses. Your names will not be used,nor will true identities go beyond me. The reason for authentic story signatures is only a protective mechanism for both author and patient as permissions must be obtained.
I hope to hear from all of you soon....thanks much!
delaney
Posts: 3
Joined: Mon Apr 09, 2012 6:56 pm

Re: A Call for Stories

Post by delaney »

An added note. It is my goal to gather as many of your stories as possible and collaberate with PNE doctors for publication in book form. We can all learn from these personal stories, especially those in medical professions.
Another call for stories will go out in a few months leaving time for writing and sending via email.
Thus far... no responses.
Thank-you!
DoubleEdgedSword
Posts: 201
Joined: Thu Oct 27, 2011 7:15 am
Location: Ontario, Canada

Re: A Call for Stories

Post by DoubleEdgedSword »

I've sent you an email with my story. If you need more info or clarification, please email me.

I hope you get enough stories to go ahead with your publishing.. Anything that raises awareness about these disorders can only be of help to the medical profession.

Please consider sending your stories to delaney.. :)
On the road of discovery to see what is causing my PGAD.
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