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Pain Down There online resource

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Stephanie-Yeager-screen

You might recall me plugging the Pain Down There DVD – an extensive resource for women created by Robert Echenberg, Karen Liberi, Alexandra Milspaw, and Stephanie Yeager.

Now the team have taken this a step further, turning the DVD into an online, supported program.

The idea is to offer support and pain management in small groups of 10 – 15 women who start the program at the same time. The video content is released to them online and they also get to meet as a group online with Stephanie as their personal health coach. Individually they have the option to meet with the doctor and PT – all via video conferencing.

Finally! Continue Reading

Dr Susie Gronski: How One Artist Used Her Hurting Strings To Stitch Back Her Life

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I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.

Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!

Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.

(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)

Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.

She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.

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Mamamia: My experience with medication

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Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes. Continue Reading

Help me keep this site going – annual subscriptions $3

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This chronic pain advocate could do with a little help maintaining her website.

Your $3 per year makes a huge difference and shows me you appreciate what I do.

If you’re a professional who’s given me information to add to this site, that information will remain FREE but my personal content and WorkCover related posts will require subscription.

Support my advocacy for chronic pain and injured workers – SUBSCRIBE

ANZCA Bulletin: Simple Accident Leads to Life of Pain

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(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. Continue Reading

I’ve been nominated for a WorkSafe Award

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VWAAwardWebsiteHeaderI’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 Physician in Rheumatology and Pain Medicine. You’ve seen him battle beside me publicly on social media. Not only helping me with my comprehension and study of chronic pain, John has also helped me through the tangled forest of Workers Compensation. He now advocates to expose the many pitfalls for injured workers in the various Australian Worker’s Compensation systems.

In supporting my unequal struggle with the Victorian Workcover Authority (VWA) he has witnessed what it takes to survive being in the system. As if his support isn’t enough, he now honours me by nominating me for a VWA Heath and Safety Award.

Soula, with your permission I have just nominated you for a Victorian WorkCover Authority Award in recognition of your long and arduous struggle against all odds to return to work. Whether or not the nomination is successful, I want you to know that in my opinion and in that of the other referees, Professor Stephen Gibson & Rosemary McKenzie-Ferguson, you are most deserving of such recognition. In addition to your return to work, you have performed an important role in pain education as an advocate for sufferers of this distressing condition (pudendal neuralgia). Your ability to smile and to be creative in the face of adversity has been an inspiration to many pain sufferers around the world. I wish you the best of luck!

Basically, it’s about this:

Worker Return to Work Achievement. Tell us their story!
This category recognises a worker’s outstanding achievements in returning to work following a workplace injury.

Nominating a person, group or initiative is easy! All you need to do is tell us the nominee’s achievements by following the prompt questions – tell us what the person/business/group did, why they did it, and how it had a positive impact on their workplace.

I don’t mean to be pessimistic, but after experiencing the VWA culture for 7 years now, I’m pretty sure the nomination will be rejected for some paltry reason/s based on my pending application for part payments of compensation. It’s been over a year since I submitted that application, so they are obviously struggling to come to terms with the fact that I attempted a return to work. Accepting a nomination for someone they have not been supporting in their return to work would be hard to imagine. But I live in the hope that has sustained me so far – that of a successful outcome.

(Update July 22, 2014. Nomination accepted)

Nomination as submitted by John Quintner and supported by Professor Stephen Gibson and Rosemary McKenzie Ferguson:

Soula and her husband Theo run their own business in art and graphic design, providing creative solutions to their clients. Her injury has had a major impact upon their lives together, as well as upon their business. She has consulted many health professionals and has been given a large variety of opinions, investigations and treatment procedures.
Describe your job prior to your injury.

Prior to her injury she and her husband ran a highly successful business. Soula was also a prolific artist in her own right. She was very energetic and a great support to her family and friends.
How were you injured and what was your injury?

Soula fell onto her sacrum when a fit ball upon which she was seated burst. Her injury was extremely difficult to diagnose but after some considerable time her pelvic pain was ascribed to an injury to her pudendal nerve – pudendal neuralgia. The insertion of a pelvic nerve stimulator was a turning point in her rehabilitation. She is still quite disabled and requires regular medication for pain relief.
Describe the job they do now (including employer if different).

For the past 12 months Soula has been attempting a gradual return to work within her physical capacity and has reached 9 hours per week. She has had to overcome many physical difficulties in terms of her home and work environments. Soula is still engaged in art and design work. Since her injury she has taken on an important advocacy role for people suffering from pudendal neuralgia.
What were the hardest and best things about returning to work?

The hardest thing was the lack of support from her WorkCover-appointed Agent, who placed many obstacles in her path and has refused to pay her any compensation for the past 12 months. Soula has been examined by two medical assessment panels and has found the Conciliation process to be unhelpful. The Ombudsman has been approached for assistance. The best things have been her ability to retain a sense of humour, to remain creative and positive in the face of adversity and to provide inspiration to many pain sufferers around the world.
What do you think helped you most to return to work and get your life back?

The support of her husband and family, as well as her many friends in the art world and in the world of pain management. Last year, with the support of a pharmaceutical company and members of the Australian Pain Society, Soula addressed a meeting in Sydney of over 160 pain specialists. The text of her address to this meeting is posted on her website. She has also taken part in an advertisement to raise research funds for the Faculty of Pain Medicine, Australian and New Zealand College of Anaesthetists. Soula has become an advocate for sufferers of pelvic pain conditions.
What advice would you give other injured workers?

The many injured workers and fellow pain sufferers who follow her web-log have benefited from reading about her quite varied experiences whilst in the WorkCover system. She found the system to be decidedly unfriendly to women with undiagnosed persistent pain but she has counselled them not to lose hope. For those who are faced with her situation, her advice to other injured workers is not to declare a work capacity,

View my nomination at www.healthandsafetyawards.vwa.vic.gov.au/browse-entries/entries/the-hurting-strings

 

Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

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AIM of Pain 2014 from (OoI) on Vimeo. Or read the speech below.

I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.

Was I terrified? Absolutely! But as if chronic pain hasn’t trained me for that, pushing me past all my boundaries and limits, and facing constant fears… this was going to be a piece of cake in comparison!

The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art. Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo’s help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support offered to both Theo and I was 100%.

I was asked to present my story as honestly as possible and in my own words and pictures. 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 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

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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…

Pain Train my online health record

Imagine your specialist knew this much before your first appointment…

Pain Train my online health record

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