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How can you know? There might be better treatment out there!


I was sure. So positively sure.

I was miles better, my life was saved, I was no longer existing, I was living again.

I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.

But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.

I wasn’t, I hadn’t.

I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)? (more…)

A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain


There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.

I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.

This DVD isn’t just about managing pain, but rather a clear and concise  resource for females… It should be put on some International educational agenda. (more…)

Back on the treatment trail



Maybe I should have titled this post, ‘Back on Pain’s roller coaster‘? But then I’d have to explain my position – which would it be? Up or down? Or is this another case of in the middle – managing?

I have many descriptions for my health status and they are constantly revolving around in my head. That’s because I don’t know where I ever stand with this chronic pain. And there seems to be no one else who knows where I (or you!) stand either. So damn frustrating.

But last year, I got fortunate. Someone planted a seed… (more…)

‘Ouch’ just doesn’t cut it!


I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. (more…)

Pain Train – Communicating chronic pain from the patient’s platform


All aboard!

It’s true that each of our pain journeys are unique. I must have been asked the following questions at least a gazillion times during my own pain journey:

How did the chronic pain begin, what investigations have you had, did you bring any reports with you, what kind of pain treatments have you tried, how long have you had chronic pain, which Health Care Professionals (HCPs) have you seen, have you taken any pain medication…?

Pain-Train_Jan2_1000pxAnd, I will never forget struggling to answer. That is if I was able to answer due to my fatigue, extreme pain levels, or dulling effects due to pain medication.

So how can a HCP begin to gather the best possible understand of each of their patients unique pain journeys? And how do patients navigate their search for diagnosis and treatment as best they can?

Stand clear… Pain Train is approaching


This Train is Bound for… Wholeville: A Travel Guide for the Perplexed


Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville


Intermission, my solo exhibition in Hobart


It’s my PN anniversary, eight years (if I don’t subtract the 4.5 years it took me to find out it was in fact PN)!

Obviously time brings on reflection which in turn invites the ‘melancholies’ (yes, I did just make up a word). But I have significant reason to bury the ‘melancholies’ this year with the celebration of my solo show at Penny Contemporary in Hobart.

During a recent four months on the East Coast of Tasmania, I was able to focus on my fine art and decided to document my ‘self’ during this very reflective time. Theo and I took time out to ask ourselves, ‘What next?’ having lost my battle for part-time compensation and realising that sustaining, even a part time sitting job, is difficult for me. It was a most valuable time for both of us.

I’m going to leave the review for Intermission to two brilliant women; Australian artist Barbie Kjar (who will open my show and who’s words appear on the invitation), and my niece Kat Moritz, who’s words appear below.

Consider this post your invitation. View all the works here. See you in Hobart!

Solace 457 x 508 mm. Dec 14. Oil on linen.

Written by Kat Moritz

Artist Soula Mantalvanos’ most recent exhibition, “Intermission” signals a bold departure from previous works into more mature, more personal and much more intimate territory. Aptly named, the exhibition is a series of self portraits, which – as a whole – stand as a bold exploration on the artist’s behalf, of her identity as an individual during this intermission of life that she has found herself in.

Painted in the solitude and anonymity of Tasmania’s still very much unspoilt east coast, well over 500 kms from the artist’s inner city home of Collingwood, the works represent an equally pared back and exposed Soula. Leaving behind over seven years of chronic pain and the familiarity of city life, Soula’s portraits are as much of an experiment on her behalf as they are very tangible markers of a new direction in her work.

“I wanted to ask [all those hard] questions and answer them without influence – put them on paper and exhibit the experience. Perhaps I’m testing my confidence? Perhaps I’m wanting to prove to myself that I’m an artist once again?”

Soula’s portraits may have been born out of a pause in her life but, paradoxically, as a body of work, they speak of journey; of transformation; of maturation. Soula makes no effort to conceal brushstrokes or to avert the gazes of her Soulas that stand before us. Instead she commands them to look us straight in the eye, sometimes with poise, at other times with hope, however, always with sincerity. There is no hiding in the wings for this artist or these works; they most definitely warrant to be positioned centre stage; humbly; quietly, however, centre stage nonetheless.

Exhibition Details

Download the invitation
Intermission Invite pdf Intermission
Self portraits by Soula Mantalvanos
Opening Saturday 7 March, 2015 at 4:30pm by Australian Artist Barbie Kjar

Exhibition continues
MARCH 6 – 25, 2015

187 Liverpool Street Hobart Tasmania
info@pennycontemporary.com.au 03 6231 5655 pennycontemporary.com.au

Supported by
Aesop, Chronic Pain Australia, Coal Valley Vineyard and Pain Australia

ANZCA Bulletin: Simple Accident Leads to Life of Pain

(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. (more…)

Committment, sacrifice and granting myself the right permissions


Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

Yoga for Pain via Skype

Rachael West(Excerpt from findingyoga.com.au

Rachael West is a yoga teacher, facilitator and educator.

She is an accredited yoga teacher with Yoga Australia with roots in the Krishnamacharya lineage and in 2011 completed a University Diploma in Yogic Education (University of Lille, France) with first class honours.

As the only Australian to study this specialist practice area, Rachael is able to work in a unique space in health care: allowing each person to understand what wellness means to them and to develop the practices that will get them there.

Rachael has also graduated from a Circus in Performance qualification with Greentop Circus in Sheffield, England. Prior to that, she obtained a Bachelor of Civil Engineering (Curtin University, Australia) with first class honours and worked as a civil engineer and facilitator in the public and third sectors.

She is credited with creating the first Gentle Yoga for Fibromyalgia program in WA, allowing sufferers of chronic illness and persistent pain to gently resume exercise, manage the stress of their condition and build confidence in their bodies. The program is allowing them to re-discover their relationship with their bodies.

Changing how we feel about our bodies when they hurt

The Yoga for Pain program is available in person or online and helps those with Fibromyalgia, Chronic Fatigue and persistent pain return to gentle exercise safely, manage the stress of their condition and feel confident about using their bodies.

With a special focus on body awareness and effortless movement, Yoga for Pain is helping people to reconnect with their bodies and change their relationship with pain. (more…)

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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 aggrevated 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.

Thank you {Pain}Train for giving me a voice at all my appointments

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Pain Train was created by me – a patient, for patients!