Hello, welcome to my website!

I hope you’re not in ongoing pain but if you are, this website was created to provide a positive outlook for people who are experiencing chronic pain.

Created in 2011 this website was made for people like you. I want you to know that what you might be feeling right now is not forever and that you can change your situation.

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 manage it (I know what you’re thinking, you’re wrong, 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

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.

For me, this includes;

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.

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:

So let’s begin:

  • Do you have chronic pelvic pain?
  • Have you had this pain since injury, pregnancy, 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 the world of chronic pain.

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I have to acknowledge my diagnosing physio, Anne-Florence Plante who lent me her research and encouraged me to put this website together. Also, a huge thanks to the contributors who wrote letters of support and allowed me to share their valuable information.

Another reason why I made the site is that I felt Victorian injured workers needed some advocacy also. My experience with the Victorian Workcover Authority (VWA) has been horrific. 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.

A reminder that this website is a documentation of my experience and my treatment (appropriate and not!). No information provided on this site is a form of recommendation in any way. Each of us has a unique experience with chronic illness, and each has to find our way through it.

The 17th Anniversary Post

In 2013, when I began making progress with pain management, I had the idea to make a marionette of myself. Theo and I had just travelled to Italy (masks and Pinocchios everywhere!), and returning on the plane I watched the film, Marilyn. It dawned on me how seriously invisible many illnesses are. As much as I would have loved to make the marionette myself, at the time, any self-portraits I was drawing or painting were horrifying. They were brutal, disturbing, and sad to the point where I had to ask Theo to wrap them up one day – I couldn't look at them anymore.

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Is Symptom Tracking Your Road Map to Better Days?

Soula Mantalvanos (me!) as a guest contributor on MoreGoodDays. If you're living with fibromyalgia, you'll know first-hand how the experience forces you into constant symptom tracking. What’s this niggle? Is this new? Does this relate to something I did? What’s going on? Sound familiar? It's an exhausting thought process that can keep you spiralling into confusion. Being too focused on symptoms (especially when you’re already living in a cloud of fatigue) can perpetuate ongoing fear and catastrophising. This can lead to a [...]

  • Soula Mantalvanos Final Performance self portrait
It’s National Pain Week And I’m Celebrating by Writing the End of this Story

Every year I think something amazing will happen during National Pain Week. But every year, nothing amazing ever does. We all wait for answers, but either the answers don't come, or they prove more tiresome. Worst of all, the answers are a direction to a lonely zone – the figure-it-out-yourself zone! So, figure it out myself; I will this year! I'm making National Pain Week AMAZING by writing the end of this story. 

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‘Reading’ books, books and more books

Well, not entirely reading; using my ears instead! Where have I been? Seriously, how did I not get into Audible sooner? You would struggle to get me to switch my daily routine of listening to classical music – I love it and have been doing it for decades.  My alarm goes to ABC Classic FM in the morning, and the music filters through our home and my studio until dinner prep time. Classical music does so much for [...]

A glorious facade – just look at me!

(Photograph Ivan Kemp) Do you like this picture of me? When I see this photo of myself, I see someone proud and accomplished. My posture reflects inner strength and confidence – I am the gallery director hosting the opening of a very special exhibition and nothing but! It was a long day with a private event for patrons followed by a dinner – I’ve never faced a day like this since my injury in 2007. Fortunately, Theo rarely [...]

  • SOLD Soula Mantalvanos Piscina S. Moise Venice 2022 oil on linen 21 x 30cm $1090 framed (1)
Here and There, art exhibition at Queenscliff Gallery

Here and There exhibition: paintings, drawings and etchings of Venice by me at Queenscliff Gallery. It's thrilling to be writing this post. To my friends and followers further afield than Melbourne, I will have a virtual tour of the exhibition published on the Queenscliff Gallery (QG) website where you can view the works forming the exhibition and some of my other available artworks. Here and There is a culmination of my recent trip to Venice... to date!