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Happy to be stars of The Scheme Project

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Soula Theo On Scheme Project

Soula Theo On Scheme ProjectMy 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 usual dead-end letter from a WorkSafe Agent, Government body, WorkSafe themselves, if not the dead silence and ignorance that’s on offer for most workers’ concerns.

I was ecstatic when I heard about Kris Vanston and The Scheme Project. and I offered to jump on board and help in any way I could. Theo and I have signed the petition and have both made our pledges. Recently we took our support one step further and spoke up in front of the cameras for The Scheme Project’s Pozible campaign promo. Continue Reading

Social Media for Pain Education, Pain Australia

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Pain Australia Logo

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013

Pain Australia Logo

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 Pudendal Nerve.

Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.

Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online

“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”

After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.

He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.

“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.” Continue Reading

Desktop mag: Creative Practice & Pain Management

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(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)
Written by Soula Mantalvanos

Origin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, Soula and Theo Mantalvanos. Soula has a rare condition called ‘Pudendal Neuralgia’ which on some days can be completely debilitating. Here she shares some insights into her daily routine, and offers some advice for practitioners dealing with similar predicaments. Continue Reading

The Design Files

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Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So 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.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder 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. Continue Reading

The Scheme Project

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The Scheme Project

I met with Kris Vanston yesterday after making my pledge to The Scheme Project last week and an exchange of some cyber chit-chat. We realised we had something in common, we want to better the Australian WorkCover system.

What is The Scheme?

(Sound file and excerpt from www.thescheme.com.au)

The Scheme Thumb
We’ve all heard the sensationalist news reports, however the true statistics behind injured workers are alarming; less than 0.5% of injured workers are the ‘fraudsters’ you might see on TV (Victorian Ombudsman’s report 2011), yet most injured workers are spied on by private detectives (yes, really), they’re made out to be guilty until proven innocent, each year costing taxpayers over $14 million in Victoria alone. It seems everyone involved in the system is growing tired of it’s inefficiencies, ultimately though, it’s the injured workers that gets left behind. Insurance companies are delaying and denying claims that should be processed because they can make a profit from it. Recently, CGU (one of WorkCover’s insurers), had locked up over 10,000 files in a hidden cupboard and manipulated invoices which made the company $2.5 million in profits. Now you have to ask yourself. How much more of this behaviour is not being reported? How much information is so incriminating to bodies such as WorkSafe or insurance companies, that they are willing to pay to suppress it? We are here to find out! Sign our Petition below and have your voice heard! We thank you for your continued much needed support. Continue Reading

My_Space, My facade, living with Pudendal Neuralgia

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Sunday Style My SpaceWe don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN). Continue Reading

Interpretive Dance about living with IC & Pelvic Pain

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 Interpretive Dance about living with IC & Pelvic Pain

An incredibly effective form of communication for Internal Cystitis (IC) and Pelvic Chronic Pain.

Certainly captures everything I’ve felt and everything I hope; release those chains! And how true that they are depicted with such weight. Absolutely loved this. Donna Massa-Chappee congratulations. Thank you for expressing this so clearly, for your understanding and for taking the time to help others.

Watch the YouTube movie: Interpretive Dance about living with IC & Pelvic Pain

Artist’s statement:

An interpretive dance using the combination of modern dance and classical ballet to express the trials and tribulations of living with Interstitial Cystitis (IC) and Pelvic Pain Disorders. It is about a women who has been diagnosed with IC and experiences an incredible dream. In her dream she relives every emotional detail of fighting through chronic pain: frustration, isolation and embarrassment. During the dance there are symbolic props used to identify with the symptomatic problems she endures when dealing with these disorders. In the middle of the dream the woman surrenders to acceptance, letting go of its grip, and moves on to the final stages of the healing process resulting in joy, happiness and freedom. In the finale of this piece, during the awakening stage of her dream, the woman expresses an uplifting revelation of bliss, for there is no more anguish and pain or the chains that once bound her… Continue Reading

ABC Radio National thank you thank you thank you

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Finally some accurate coverage and attention. WorkSafe, I hope you were listening, ignore Chronic Pelvic Pain no more!

Honestly, I cried listening to this on Wednesday. Nothing like empathy and understanding after years of pain and hunting for diagnosis and proper treatment. So for anyone who’s (understandably) thought ‘is so-and-so really in pain? I just don’t understand’, please listen to the following 38 minutes.

The world of pelvic pain specialists have jumped on this wonderful exposure, Wednesday was a day that will be marked in medical history. It’s given all sufferers a voice and most importantly an audience. I have a hunch it’s going to take WorkCover a while to acknowledge the issue but I’m going to do my best to change that. I know it’s a long shot but there are people with this pain at home, unable to get up and feed/dress themselves without support because WorkCover have chosen to eliminate ‘chronic pain’ from their assessment guidelines.

None of my treatments have been supported, my support for the rest of, what would have been my working life ended, my impairment found to be 0% (even with an implant scar). I’ve been investigated (poorly I might add) and now left with about 9 hrs of scattered up time a week, having invasive treatment, and completely reliant on Theo’s undivided attention and help, with 0$ support. Of course I’ll do it, but I paid a WorkCover premium and expected it to support me if I hurt myself at work.

Please feel free to share the email. Thank you ALL for your support (well except for WorkCover).

Listen now or Download audio

Broadcast: Wednesday 6 February 2013 9:05AM (view full episode)

Imagine not being able to sit down, go to work or look after your kids because of an overwhelming pain in your pelvis. One of our guests, Vanessa Watson, experienced excruciating pelvic pain for several years and it’s radically altered her life. Vanessa’s story is not uncommon but as the causes for pelvic pain are complex; some women don’t receive adequate medical treatment. So what is known about the causes and could medical treatment and services improve?

Guests

Bettina Arndt
Social Commentator
Dr Susan Evans
Gynaecologist and Pain Medicine Physician
Vanessa Watson

Credits
Executive Producer Julie Browning

Presenter Natasha Mitchell

Read more…www.abc.net.au

ABC 1 Catalyst: The Trouble with Sex

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Yay for some recognition and acknowledgment!!

Read/see the full program

Excerpt from the program below:

NARRATION
Injury to this nerve can happen during childbirth or with lower back injury, or strenuous exercise. Australian based expert on the pudendal nerve is gynaecologist, Dr Thierry Vancaillie.

Dr Thierry Vancaillie
When they come to see us, they will talk about bowel dysfunction and bladder dysfunction. Maybe talk about pain within the course, but arousal problems, well, they’ll leave that for last, if they’ll talk about it.

NARRATION
Dr Vancaillie is experimenting with a more permanent solution to this problem. He will use a neuro-stimulator, which is surgically implanted into the base of a patient’s spine. If he can abate the pain, it’s likely he will also abate the arousal. Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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