Hello, welcome to my website. I hope you’re not in pain but if you are, this website was created to give hope to people like you and also to educate those who treat people with chronic pain.
My name is Soula, I literally fell into the land of pelvic chronic pain, specifically Pudendal Neuralgia (PN), on March 1, 2007 when a fitball I was sitting on burst and I fell to a concrete floor whilst working at ooi, my art & design studio that I run with my husband Theo.
(Above: Soula in 2013 with a self portrait marionette)
I am an artist also advocating for pelvic chronic pain and Australian injured workers.
It’s been an overwhelming emotional journey since 2007 – one even a creative could have imagined. As well as the endless hunt for treatment that might lead to recovery, I have:
- Created pudendalnerve.com.au — a website created to give hope to people with chronic pain and to educate those who treat them.
- Self published Art & Chronic Pain, a simple ‘story-like’ book that helps people with chronic pain explain what it’s like to have this condition.
- Presented my story to 180 practitioners interested in chronic pain at The Alliance for Improving the Management of Pain 2014 in Sydney, Australia.
- Created a documentary The Hurting Strings a story focused on my non-drug dependent approach to managing and living with chronic pain.
- Founded Pain Train my online health record
- Been interviewed for the 7.30 report – Choosing practitioners on the new website whitecoat.com.au, which enables people to rate, compare and find healthcare practitioners.
- Joined the Alcohol & Drug Foundation’s A risk – medication harms campaign.
But, first and foremost, and what every visitor in pain needs to read, is the fact that I’m conquering PN instead of it conquering me. Since my diagnosis 4.5 years after my fall, I’ve had appropriate treatment that has been slowly chipping at the PN glacier. And yes, I was living with unbearable pelvic chronic pain that made me feel I had my finger stuck in a power point, it had me sleeping my life away and when not sleeping, in so much pain it was impossible to achieve much at all. I was existing, not living.
Secondly, this site was instigated because of my very late diagnosis and my wanting to prevent anyone else from experiencing that unnecessary pain and the sense of being lost for an explanation that comes with that experience.
A huge thanks to my diagnosing physio who lent me her research and encouraged me to put this website together. Also a huge thanks to those who contribute their information.
And thirdly, I felt Australian injured workers needed some representation also. My experience with the Victorian Workcover Authority (VWA) has been nothing short of horrific. The VWA neglected to support me as an injured worker – the very thing they claim to do and the very reason they accept premiums to do in Victoria. Rather, this system merely seems to exist to generate funds for itself and only adds to the pain and trauma of an injured worker.
As mentioned in the disclaimer, my website documents my injury, my treatment (appropriate and not), relevant resources I have found online and also material kindly provided to me, by my treating practitioners, specialists in Australia and Internationally.
So let’s begin… unless you’re the type of reader who heads straight to the end of the book, in which case here’s my latest post. For the rest of you:
- Do you have pelvic chronic pain?
- Have you had this pain since injury, pregnancy, birth, or some other trauma to your pelvic area? Perhaps you are an elite athlete or cyclist?
- Does it feel like a toothache, does it itch and gnaw, do you feel like you’re on fire?
- Do you feel spasms, fluttering and glitchy?
- Are your toilet and sexual signals and functions irregular?
- Is there no obvious issue on your x-rays and MRIs?
- Do you find distraction can often work incredibly but afterwards the pain becomes excruciating?
- Is the pain often worse after activity rather than during?
- Do you feel no one quite understands you, your explanations, and your pain descriptions?
- Have you been told you have a Psychological Condition, and been left to feel like you’re crazy?
- Do you associate your pain with ringing in your ears and feel you can’t quite pinpoint where it is?
- Would you say its painful to speak at times and that sounds and speaking hurts?
- Have you had endless appointments with no relief?
- Do vibrations, a fright, or bumps send a surge through your spine?
- Do your legs feel weak?
- Do you find sitting unbearable?
- Have you fallen on your coccyx and after years, does it still feel like it happened yesterday?
- Are you part of an Australian Workers’ Compensation system and feel you are being treated poorly and that the whole system is like a circus?
- Do you feel the Australian Workers’ Compensation system can’t help with return to work because the VWA Agent treats you poorly?
- Do you feel the system is out of date and primitive and has no understanding for Chronic Pain or your situation?
Then I sadly welcome you (NOT) to my world.
If you subscribe to my posts (right side bar) you will receive my posts straight to your inbox.
One thing I would highly recommend is that you organise yourself and prepare for this chronic pain journey – sign up to Pain Train and create your personal health record so that you tell YOUR story at every appointment.
- My documentary: The Hurting Strings – An Artist’s Story of Pain
- My book: Art & Chronic Pain – A Self Portrait
- The presentation of my story at AIM Pain 2014
- My pre pain life…
- My family, Theo, Origin of Image & Zephyr…
- The big bang injury…
- The way relief started…
- The way relief continued…
- Diagnosis: Physiotherapy at The Women’s…
- Building Blocks…
- Next stop: Traditional Chinese Medicine…
- PN Directory: Who can help and Where in the World Are they?
(Below: Soula in her church gallery and studio, 2016)