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 this terrible lived experience, I realised I could help many people by building a website. The aim is to empower you so you can manage your health issue and to also avoid ongoing chronic pain –yes, it’s possible!

I want you to know that what you might be feeling right now won’t last forever, and that you will be able to change your situation, even if you’re stuck in negative thoughts and feelings, and all your efforts aren’t working. Change can be slow and will take longer 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.

You’ve got this!

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.

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).

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.