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Social Media for Pain Education, Pain Australia

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

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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

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

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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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