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.
View above or visit The Hurting Strings on reelhouse.org/the-hurting-strings Let's watch The Hurting Strings I'd like to express my biggest thanks firstly to Peter Lamont for taking this project on and [...]
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 [...]
Excerpt from Sullivan Physical Therapy’s Sara Sauder. Read the full interview on her blogspot. Soula Mantalvanos is an Australian artist living with pudendal neuralgia. She runs a website and a blog that chronicles her [...]
(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.
Being interviewed, live on Pelvic Zen this Thursday 10th at 5:30pm Austin, Texas (Central Standard Time) / Friday 11th 8:30am Melbourne Australia (Eastern Standard time).
The documentary explores what chronic pain is, its individual and societal impact, and the future of pain management through the stories and struggles of six individuals living with chronic pain and their loved ones, as well as perspective from leading national experts in pain management.
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’.”
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 [...]
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 [...]