I just want to send prayers to those with this condition that didn't make it. I honestly couldn't imagine another 32 years like I was. Living in silence about the physical pain was nothing compared to the psychological pain that PN and PNE causes. Without those before us we would have no answers at all and with no answers we would have no hope.
Thank you to the friends and family left behind for those that didn't make it. Who ended their pain the only way they new how. Without them, we would be the ones with no hope.
I prey for all on this site, all that didn't make it, and those who haven't found this site yet. I ask that you do the same.
Bless you all
Kathy
Those that didn't make it
Those that didn't make it
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.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
Re: Those that didn't make it
Thank you kathy. This is a wonderful thought. past PN sufferers and those still to find our website are definitely in my prayers too.
Catherine
Catherine
Re: Those that didn't make it
i also pray for those family members who couldnt or wouldnt understand just what its like to live with this pain 24/7. Their lack of understanding and will to try to understand is a failure....we cannot and shouldnt judge them for this but be strong in the knowledge that we as sufferers live with this all day everyday long.
I have often in my worst hours of the middle of the night thought that I would like to make a contribution to the PN Community...I have donated my body to Prof Robert for scientific purposes and also made a section in my Will to leave a large donation to HOPE so that others can benefit from my demise.
I struggle every day and would one day want others to know why I still hurt despite many treatments and surgeries......maybe its not possible to find out but who knows!!!
I have also stated that on my headstone I would like the inscription to state in Latin and french that I tried all I could and still did my best everyday.
I have often in my worst hours of the middle of the night thought that I would like to make a contribution to the PN Community...I have donated my body to Prof Robert for scientific purposes and also made a section in my Will to leave a large donation to HOPE so that others can benefit from my demise.
I struggle every day and would one day want others to know why I still hurt despite many treatments and surgeries......maybe its not possible to find out but who knows!!!
I have also stated that on my headstone I would like the inscription to state in Latin and french that I tried all I could and still did my best everyday.
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.
Re: Those that didn't make it
Amanda -
You donated your body after your death? How does that work exactly? I always figured no one would want any of my parts since my parts have never worked correctly, but maybe my broken parts could help others understand the body better.
Would you mind explaining how the body donation works? I'm very interested in learning.
Kathy
You donated your body after your death? How does that work exactly? I always figured no one would want any of my parts since my parts have never worked correctly, but maybe my broken parts could help others understand the body better.
Would you mind explaining how the body donation works? I'm very interested in learning.
Kathy
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.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.