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.
I am an artist and creative director and now also an advocate for pelvic chronic pain and Australian injured workers.
Since 2007 I’ve had an overwhelming emotional journey, one even a creative like myself could ever have imagined.
I’ve self published my book Art & Chronic Pain – A Self Portrait, that I felt could be of comfort, support and an education to those who treat pain. I’ve presented my story to 200 professionals at AIM Pain 2014 with an immense response from professionals, I’ve appeared in a Television commercial for ANZCA, been interviewed by pain organisations and even had The Hurting Strings documentary made in the hope of creating awareness for those who live in daily pain.
But, first and foremost, and what every visitor in pain needs to read, is the fact that I’m conquering PN. 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.
Second, this site was instigated because of my very late diagnosis and me 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 third, 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 neglects to support injured workers return to work, the very thing they state they do and the very reason they accept premiums for 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. Read my rants here, Work & the System.
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..
- 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. Please subscribe so you keep up-to-date with my progress.
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…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
PN Directory: Who can help and Where in the World Are they?