Directors of HOPE - Who are we? - Introduction

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Directors of HOPE - Who are we? - Introduction

Postby Amanda » Fri Sep 17, 2010 9:50 pm

There are 7 Directors of HOPE

I would like to introduce myself to you all.
My name is Amanda, I am Irish, a 47 years old mother of two daughters and divorced.
My history with PN began with a Hysterectomy in 2003, which lead to many procedures spreading over many years; you can read my full story here in this link:
http://www.pudendalhope.org/node/67

I have been a very active member on many websites having also moderated and administrated on them for several years.
Many of you will know me but I wanted to make this introduction for those who are new to our forum; I just would like you to get to know me a little more and feel confident that you have dedicated people working to create this forum and organisation.
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.
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Re: Directors of HOPE - Who are we? - Introduction

Postby KRISG » Fri Sep 17, 2010 10:31 pm

Hi all,

I will follow this good example here.

I'm Kris.. I know the most fora for 6 years now .I worked with this crew for more as a year now ..
My personal full story(up till now ) is here : http://www.pudendalhope.info/node/70

I also like to welcome you here .
It has been very difficult weeks for allot of us -- including me ..
But I'm glad we did build a place of our own organisation . A place where people that help the most ...decide the most .
I think that together with you all we make this the best PNE forum on earth !
Bicyclist / IT guy / sitting allot
Then pain -- but only when sitting--
took me 3 years - nerve blocks etc to find out that it really was the surface of a chair that could help.. Now . After 5 years doing well -- on a special chair - special recumbent bike- special car - but ..almost without pain !!
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Re: Directors of HOPE - Who are we? - Introduction

Postby Violet M » Sat Sep 18, 2010 4:36 am

Hi Everyone,

My name is Violet and I have been a member of the PN community since March or 2004. You can read my story here:

http://pudendalhope.org/node/65

I am married with two handsome :lol: 8-) wonderful sons and I live in the southwestern USA. Five years after my PNE surgery I was able to return to work and I have a great job that I love.

PNE changed my life forever. Even though I am no longer in severe pain, I will never forget what it was like during the lowest part of my life and that is why I continue to be here to try to give support to all of you who are still suffering. I am here to give a shoulder to lean on and to say my 2 cents now and then about PN and all related topics.

I am committed to pudendalhope.org and HOPE because I believe that as a charitable non-profit organization, we will be better able to further the PNE cause. Please feel free to give suggestions or ideas to the directors of the organization. We welcome your input.
Last edited by Violet M on Sat Sep 18, 2010 2:57 pm, 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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Re: Directors of HOPE - Who are we? - Introduction

Postby catherine a » Sat Sep 18, 2010 5:07 am

Hi all and welcome.
As a director of HOPE I welcome everyone to our new website. My PN journey started in 2004 following a vaginal hysterectomy and pelvic floor repair. (A & P repair) without these dedicated and valued members of the PN community my life would not be where it is today. I live in Australia and with the support of the PN community have been instrumental in bringing knowledge of Pudendal Neuralgia to the medical profession as well as the general community here in Australia.

The first two doctors in Australia to believe that I had PNE were Prof. Thierry Vancaillie (NSW) and Dr. Tim Pavy (WA) After traveling to France to consult with DR. Eric Bautrant I am now 3 years post op from the TIR approach to release a severely trapped pudendal nerve. My story can be read under personal stories. I am by no means cured but I have my life back, am back at work and can travel without too much stress. Our journey is a long painful one but please be assured there are doctors and physiotherapists who can help us through this. The more we raise awareness the more likely other health professionals will be interested in learning.

I am committed to helping and supporting others who suffer this horrendous pain and endeavour to do so via HOPE organisation and http://www.pudendalhope.org
Please know that we are real people who have suffered as you are suffering and we can fully relate to your symptoms as well as your pain and frustration of looking for answers to this horrible condition.
Please feel free to ask questions and once again, welcome to HOPE. (Health Organisation for Pudendal Education)

Catherine (Perth W. Australia )
Last edited by catherine a on Tue Jul 26, 2011 7:43 am, edited 1 time in total.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Re: Directors of HOPE - Who are we? - Introduction

Postby ataraschimmel » Tue Jun 14, 2011 7:14 am

Thank god for you all!
please become a follower of my blog
feel free to comment and to share your thoughts with me
http://pudendalneuralgia-atara.blogspot.com/.

almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
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Re: Directors of HOPE - Who are we? - Introduction

Postby helenlegs 11 » Tue Jun 14, 2011 12:44 pm

ataraschimmel wrote:Thank god for you all!

Ditto! with knobs on! well said ataraschimmel.
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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Re: Directors of HOPE - Who are we? - Introduction

Postby missyrg » Tue Jun 14, 2011 4:52 pm

Thank you for your dedication and hard work! I thank God for this site and you all.

Missy
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Re: Directors of HOPE - Who are we? - Introduction

Postby Karyn » Mon Jul 18, 2011 1:49 pm

What a pleasant surprise, Calluna! Congratulations and THANK YOU for your Directors status!
Warmest of regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Directors of HOPE - Who are we? - Introduction

Postby Laura » Tue Jul 19, 2011 6:17 am

I'm so greatful for all you! ThANKS for your work and dedication. This is such a painful and frightening condition without this website I would feel so alone! :) :)
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Re: Directors of HOPE - Who are we? - Introduction

Postby Amanda » Fri Aug 03, 2012 12:04 am

I would lke to let our members know that currently we have 11 Directors of HOPE.
Hopefully we can continue to help everyone in their plight to find out more information about treatments and therapies that can assist in the day to day capability of managing living with PN issues.
I hope that our Directors will contirubute their merits and enthusiasm here in this thread so that everyone can learn who they are and what they can contribute to HOPE as an organisation.
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.
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