Pain Revolution 2018
(Cut to the chase, I want to support the Pain Revolution 2018. Image: Lorimer and Soula at the Pelvic Pain Foundation of Australia Melbourne launch) I’ve got a soft spot for Professor [...]
January 20th, 2018
4:14 pm
April 23rd, 2017
12:20 pm
Dr Susie Gronski: How One Artist Used Her Hurting Strings To Stitch Back Her Life
I can't recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain [...]
March 12th, 2017
3:43 pm
ADF campaign: Losing Yourself in Pain Medication
The Alcohol & Drug Foundation (ADF) has been working to enhance awareness about the way Australians consume pain killers. My understanding of the campaign is that the ADF in no way suggests pain killers [...]
February 20th, 2017
12:01 pm
Mamamia: My experience with medication
Soula became dependent. "I shrunk as a person. The medication fogged my mind. I couldn't cross the road. I had to activate spell check on my phone. I didn't have the ability to think properly any more," she said.
October 30th, 2014
9:59 am
My interview with the Australian Pain Society
APS: How important are support groups for both you and your close family/community? Soula: I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.
October 22nd, 2014
10:07 am
‘The Hurting Strings’ wins International Film Festival Reel Health Award 2014
I must sound like a broken record by now, but once again, I am left bewildered by my chronic pain journey and the contrasting experiences that go from excruciating pain to exhilaration. Above all, I feel incredibly privileged at the opportunities presented to me and so happy to be able to help others by communicating my story. I could not have done this without Theo, my family and of course Peter Lamont and Jacinta Cashen.
June 30th, 2014
7:21 am
My Documentary: The Hurting Strings – An Artist’s Story on Pain
Handmade Films - The Hurting StringsLet's watch The Hurting StringsI'd like to express my biggest thanks firstly to Peter Lamont for taking this project on and for communicating my invisible message with [...]
June 26th, 2014
12:23 pm
I’ve been nominated for a WorkSafe Award
I've met some incredible people who have become my dear friends and my greatest supports during my pain journey. One of whom I often rave about is the wonderful John Quintner, Consultant [...]
April 15th, 2014
9:21 am
National Pain Report, My Story: A Pain in the Coccyx
(http://americannewsreport.com/nationalpainreport/my-story-a-pain-in-the-coccyx-8823596.html) The National Pain Report, my story. April 14th, 2014 by Soula Mantalvanos I begged my neurosurgeon to do anything, even to chop my coccyx off. But after getting opinions from other surgeons, he suggested not to go the invasive path as we had the option for an implant called a peripheral stimulator, a treatment that was reversible. It made more sense.
November 14th, 2013
10:50 am
Soula Mantavanos…Inside her home and her passion to help others!
Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain? “I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37. I think what tipped me into advocacy was the 4.5 years it took to find a diagnosis and the near miss I had with living out the rest of my life in horrific pain levels if I’d not investigated further. My chronic pelvic pain is more specifically known as Pudendal Neuralgia (PN) or Pudendal Nerve Entrapment (PNE). This is more simply put as Carpal Tunnel in the pelvis. Where Carpal Tunnel affects the hand signals and hand movements, Pudendal Neuralgia affects our biggest pelvic nerve which controls toilet and sexual signals and functions. The pudendal nerve runs under pelvic ligaments and muscles and is attached to nerve roots in the lumbosacral spine so it can be disabling. It feels like that core part of my body has a toothache or as if I have my finger stuck in a powerpoint. BUT, I’m happy to say I’m in a much better place now and that’s why I want to share my story. I believe if I was diagnosed within 6 months of my injury, I would not have this issue now and that makes me want to reach everyone with undiagnosed pain that may be suffering from PN. I’ve also been drawn to advocacy for injured workers since I’ve now had first hand experience with the WorkCover system and its limitations for understanding, assessing and treating chronic pain. In fact my chronic pain issue was not assessable for compensation. Its score was rated at 0% impairment. I’ve also submitted many complaints and questions to WorkSafe and associated organisations, I’m making a heap of noise on social media and gathering a great group of people in the hope of making a change. A network exists now, encouraging other injured workers to speak up, forming communities for support where there were none previously. Injured workers can now vent, speak up, be heard. Social media has provided a voice and is our legs (even when we physically can’t move). So in the process of advocating for PN/PNE the biggest tasks are to change the judgment and misunderstanding of ‘pain’, and misconceptions of the term ‘injured worker’.”