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 to also provide patient information for clinicians.
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. At the time, I was working at ooi, my art & design studio that I run with my husband Theo.
I am an artist and now I also consider myself an advocate for people with chronic pain and Australian injured workers.
It’s been an overwhelming emotional journey since 2007. 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, and
- Founded Pain Train – my health summary
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.
This site was also instigated because of my very late diagnosis and my wanting to prevent anyone else from experiencing that unnecessary pain.
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 personally wrote letters of support and to everyone who permits me to share their valuable information.
Another reason why I made the site is because I felt Australian injured workers needed some advocacy also. My experience with the Victorian Workcover Authority (VWA) has been nothing short of horrific. The VWA accepts premiums to manage the workers’ compensation system but they have neglected to support me in the way they claim to do. From my experience, 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:
- 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 the world of chronic pain.
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Where do you start?
Taking all I’ve learned into account – no matter what level of pain you’re experiencing, I’d be starting here: