media

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Soula Mantavanos…Inside her home and her passion to help others!

By | 2017-12-12T11:30:13+00:00 November 14th, 2013|Advocacy, Creativity, Online|

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’.”

The Hurting Strings, my crowd funding campaign

By | 2017-12-15T15:51:57+00:00 November 6th, 2013|Advocacy, Blog, Online, The Hurting Strings|

Now here's something I didn't see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won't be much smiling and hiding of pain if this happens. One of [...]

Doug Moran National Portrait Prize Semi Finalist

By | 2017-12-11T15:18:22+00:00 October 5th, 2013|About, Creativity|

Communicating pain... Absolutely gobsmacked at this achievement, and incredibly confused at the same time. Who would have thought a horrifying life changing event could bring so much reward. Nevertheless, I’m going with it and am stoked to be considered for [...]

Happy to be stars of The Scheme Project

By | 2016-05-15T21:27:59+00:00 September 25th, 2013|Advocacy, system, Work / System, Workcover|

My rants are plenty in regard to the WorkCover system and my efforts to express the limitations and lack of support I’ve experienced as an injured worker for almost 7 years have been endless. All efforts have led to the [...]

Social Media for Pain Education, Pain Australia

By | 2017-12-11T13:47:08+00:00 August 24th, 2013|Advocacy, Online|

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013 Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website [...]

The Design Files

By | 2017-12-11T14:28:45+00:00 June 26th, 2013|About, Creativity, Living, Online|

...I'll clarify now, this post is a very positive one. It's about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills. ... not only did Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn't have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. ... I want judgement to stop. People in pain shouldn't have to say more than 'I suffer chronic pain'. It's harmful and prevents people in pain from going out when they're feeling ok, or rather when they can withstand their pain. If their houses are really tidy, that means they have help. If you see them socialising in one place, doesn't mean they can make it to the next. We are able to smile, we can move, we can walk, we can stand, just not alot. We don't hunch, in fact our practitioners teach us to have great posture, we might sit funny, walk slow, not carry much, and stare as you may you won't see our pain. If we appear somewhere and look great, we planned for that and it took alot of sacrifice and help. If you have doubts, keep them to yourself please because there's no doubt in our mind we're in pain.