Hello, welcome to my website!

I hope you’re not living with ongoing pain but if you are, this website was created to prevent people who are experiencing chronic pain from misdiagnosis.

Created in 2011 – 4 years into my drama, this website was made to help you treat your health issue and avoid ongoing chronic pain –yes, it’s possible!

I want you to know that what you might be feeling right now is not the end, it’s not forever and that you will be able to change your situation even when you think that what you’re doing is not taking affect. Change can be slow and will be the longer you have been living with pain.

I couldn’t hold my mobile phone or a glass of water without triggering my nervous system. Yet, here I am… working part time, with very low pain levels and symptoms and a returned quality of life – I even founded My Health Story, a health tech platform to help people with chronic illness.

Who am I?

My name is Soula and I live in Australia. 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, a design company that I own with my husband Theo in our beautiful Collingwood warehouse. I was also an exhibiting artist until pain put an end to that for a few years.

Since my accident in 2007, I’ve learned a lot about chronic pain – especially that you can prevent it from becoming chronic and that you will manage it (I know you’re thinking I’m nuts, but you really can).

I want people to learn from my experience because I believe the ongoing issue I now live with was totally avoidable. I was undiagnosed for 4.5 years and that was THE most tragic part of my accident.

Get ready to recover

Do you believe in yourself? Do you find yourself thinking, ‘hey, I know more about my experience than my health carers do? That’s because it’s true.

Sure, chronic illness is confusing and complicated and it fatigues you so you can’t think but know that underneath all that is the information you need to get better.

Are you prepared to learn a great deal about yourself and make changes to your life?

This is the road back to YOU. And some of you will return to a 100% version of you and others will return to a new version of YOU. But know that you will get there.

Despite what you’re feeling right now and despite thoughts like, ‘my pain is different’, ‘this is more serious’, ‘no one can help me’, I encourage you to take a huge breath and get ready to drive because you are leading the way forward. Yes, you!

My treatment

Since my diagnosis 4.5 years after my fall, I’ve been able to find treatment that is slowly chipping at the glacier. Remember, you won’t need this – I had no resources like this to guide me which is why I fell into the big hole.

For me, recovery included/includes;

• getting control over my health files and having my story on hand with My Health Story
• getting diagnosed!
• Chinese medicine
• a neurostimulation implant, (you won’t need this if you get the right help fast)
• good sleep
• mild exercise (walking and yoga)
• investigating my DNA
• anti-inflammatory diet
• and a great deal of ongoing self-assessment – yes, I run this show, and I am getting myself better and better.

I was living with unbearable pelvic chronic pain that made me feel like I had my finger stuck in a powerpoint. I was 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. But I’m living now. That’s me below, in Venice (getting my cushion out of my bag).

My return to life

Not only did I find a way to move forward but I traded the unfortunate experience with advocacy so I could further support people living with chronic illness and Victorian injured workers.

It’s been an overwhelming emotional journey since 2007. As well as the endless hunt for treatment, I have:

• • Created pudendalnerve.com.au — a website to give hope to people with chronic pain and 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.
  • 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 My Health Story (a platform/App that helps people manage their health information and share their story)
  • Been featured in the AMA Vicdoc magazine
  • Presented my patient resources at the Royal College of General Practitioner’s GPADD Dealing With Addiction Conference
  • Regularly invited to present my patient resources at Murray City Country Coast General Practitioner Training and also CODA with Dr Paul Grinzi
  • Been awarded an Australian Government Boosting Female Founders Initiative Mentorship
  • Developed a member resource video interview series of the people who have made the most impact on Soula’s pain management
  • Coauthored What Injured Workers With Complex Claims Look For in Online Communities: Netnographic Analysis on the Journal of medical Internet Research.
  • Been a guest on the Health Design Podcast
  • Presented at the Primary Care workshop, CODA Conference 2022

Let’s clarify whether you need to read on:

• Do you have chronic pelvic pain?
• Have you had this pain since injury, pregnancy, giving birth, or 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 with 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 pinpoint where it is?
• Would you say it’s sometimes painful to speak 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 or had an accident, and after years it still feels 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 outdated and primitive and has no understanding of chronic pain or your situation?

Then I sadly welcome you (NOT) to my website but please know, there is a way to change things. That road is unique to each of us. Strap in, prepare to really get to know yourself and be prepare to slow down in order to speed back up again.