Hi, for those who don't know me my name is Connie and prior to injuring my pudendal nerve I was a happy 28 year old with a little 10 month old baby just married and excited about life.
A bang to my coccyx changed my life as I knew it and since that moment I have spent most of my days in crippling pain. Three years ago I was finally diagnosed with pudendal neuralgia. What started as a UTI feeling had become sharp needle and stabbing like pain in the areas the nerve enters (anywhere along the pelvic floor). Yes it is as painful as it sounds which is why the condition is also known as the suicide disease. This condition has totally turned my life upside down. I am no longer able to work full time, sit at a normal chair for dinner, exercise... The list goes on.
So far I have tried pelvic floor physio, been treated in hospital with three nerve blocks and trialed a multitude of medications. Our family has been operating on a single income for most of this period and we have spent approximately $15,000 in medical bills. Unfortunately as my pain management team have told me we are at the end of the road for treatment that is available in Australia. The longer neuralgia affects the body the less likelihood of it ever leaving. I spend many afternoons in tears in bed because I can't walk or sit down, the electric shocks hurt so much.
This condition has taken much away for me and my family. My daughter has grown up experiencing what chronic pain looks like and understands mummy can't ride a bike alongside her along with many other things.
I am a very proud person but the time has come for me to ask for help. There are surgeons in Austria and France that DO operate on this nerve. The recovery is long (6-12 months) and the procedure is major but I am at the stage of hoping to take the risks. Unfortunately it isn't cheap (upwards of $50,000). It isn't covered on Medicare and so here I am asking anyone that has any way or want of helping to please donate. I am now 32, I have been studying to become a teacher and dream of a normal life again.
My friends have offered to make a GoFundMe for the last two years and I have respectfully declined their offer but after hearing a success story of a lady in Queensland that has followed the same path who reached out to the community successfully (she is in Austria as I type this), I thought I would reach out.
Thank you for reading and your support - Connie ❤️
**update
I would like to thank each and every person that has donated to my GoFundMe.. I am so grateful and gobsmacked at the generosity of my friends, family and total strangers ❤️.
My next step is to contact the surgical team in Austria to see if I would be a good candidate. This will likely involve a trip to Sydney to access the appropriate MRI level required for him to determine if I am definitely entrapped or the nerve is just damaged. If I am not a good candidate I will at least be able to explore my options with a specialist in Sydney and look at a spinal cord stimulator. The flights, mri's, Botox and nerve blocks that accompany these appointments are expensive and I could not have entertained any of the above without all of your help. Thank you ❤️ I can't express my gratitude enough and I can not believe the amount of money that has been raised in under 24 hours.
I understand my condition isn't life threatening but the quality of it has been pretty limited. If you wanted to read more about the condition
https://www.ncbi.nlm.nih.gov/books/NBK562246/ have a read.
A special thank you to Katie Harch who has just undergone the surgery and is in recovery right now. She has had to advocate for herself her whole journey and without reading her story I would never have had the guts to make mine so public.