November 14th, 2013 10:50 am

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

By |2017-12-12T11:30:13+11:00November 14th, 2013|Categories: Advocacy, Creativity, Online|Tags: , , |

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’.”

September 21st, 2013 12:59 pm

Soula’s PN Weather Update

By |2023-02-17T10:32:01+11:00September 21st, 2013|Categories: About, Blog, Pudendal Neuralgia, The pain|Tags: , , , , |

It's been a while since I posted a personal update but it's probably accurate to say that PN's weather patterns need to be documented seasonally. I mostly have turbulence, like it's sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It's incredibly frustrating. So rather than report all the fluctuating details in between, it's best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula's PN weather update for September 21, 2013.

July 5th, 2013 1:54 pm

Desktop mag: Creative Practice & Pain Management

By |2021-02-24T10:29:47+11:00July 5th, 2013|Categories: Creativity, Online, Print|Tags: , , |

(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)Written by Soula MantalvanosOrigin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, [...]

June 26th, 2013 2:01 pm

The Design Files

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

...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.

June 10th, 2013 1:04 pm

Struck to the pelvis

By |2016-09-01T15:39:20+10:00June 10th, 2013|Categories: About, Blog, The pain|

I was walking to my studio from where I had a clear view to the sky through our balcony doors when the largest strike and thunder occured that honestly seemed like it had come through the doors and landed on our kitchen bench a few centimetres away from me. I flinched, sort of ducked in some auto response and next thing I knew I was on my knees and had fallen to the ground. My legs were so weak Theo had to lift me off the floor and we made it to the couch where I chilled, a little terrified for a while. At that point I couldn't piece together what had happened, even now I'm not sure it was all so quick, but the fact remains, I landed somehow on my knees with the back of my legs feeling like jelly unable to stand me up.

June 10th, 2013 10:35 am

Sharing Barry’s experience with Male Pudendal Neuralgia

By |2021-04-25T09:58:09+10:00June 10th, 2013|Categories: About, Learn, Personal resources, Pudendal Neuralgia|Tags: , , , |


I've lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures:
 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks. Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr's names I had found, I got calls from both Dr’s the same day.

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