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National Pain Report, My Story: A Pain in the Coccyx

Author:
Soula On National Pain Report

by Soula Mantalvanos

My pain began in 2007 when a fitness ball I was sitting on burst and I dropped onto a concrete floor. The pelvic pain that began then, I still have today: a gnawing, itching, toothache like, burning pain that causes weakness to my legs and leaves me unable to lift more than a couple of kilos or sit without constant pain.

Soula Mantalvanos

The pain worsens after any of this activity and seems to gather in a sensory flare throughout my lower spine when I go to bed. It’s unbearable.

I had many treatments, including the removal of a pelvic recto/vaginal septum. This restored my ability to at least shower barefoot and bury the hellish feeling of having my finger stuck in an electric socket whenever I hear a loud noise or am near vibrations.

But I only shed one layer of my great onion of pain. I had not been diagnosed yet and felt lost. Continue Reading

No Partridge in a Pear Tree to be Found, I’m Preparing for Conciliation… Again!

Author:

(Sing with me, to the tune of ‘The 12 Days of Christmas”:

16 points of stimulation,
Multiple case managers,
Too many Independent* Medical Examinations,
Nine anaesthetics,
Several investigations,
Wasted complaints to WorkSafe,
Four conciliation applications,
Three operations,
Two Medical Panel Opinions,
One Impairment Assessment,
and,
No Partridge in a Pear Tree to be found…

AND, still, no financial support. AND, still, no understanding of my Workers Compensation case.

My application for part payments has been rejected on the grounds that the Worksafe Agent feels I have more capacity and has gathered that opinion from my advocacy efforts, the maintenance of this website, and my art projects. So, I’m off to conciliation once again to explain what should be obvious, or rather could be explained with a phone call. But you’re not going to get that kind of service or understanding within our WorkCover system. It’s nothing but doubt and a point of the finger, turning real facts into incorrect assumptions which ultimately block all healing and return to work pathways for an honest injured worker.

Damned if I’m going to keep my mouth shut, or my return to work efforts contained. To be honest, the system is giving me nothing to lose here and every excuse to keep exposing it and its limitations. I want to get back to work and I will use any talent I have to get there, I’m a self employer. Even if that means more conciliation conferences and withstanding 15 months without a single cent. There are other injured workers to think about here too, this isn’t just about me. Continue Reading

I do I do I do believe in spooks, I do I do…!

Author:

Cowardly Lion drawing ©Soula MantalvanosIt’s my anniversary today. Seven years from the day my (and Theo’s) life changed. I’m heavily considering changing my beliefs… did I break a mirror?

I’m not superstitious, but if it means owning up to breaking a mirror I’d be more than happy to change my views. So long as at 11am today, this Pudendal Neuralgia (PN) issue goes away and my original, very well, non aching body, returns to my hardly affected exterior.

‘But hang on Soula, keep writing, unfold and expand those squally thoughts’, thoughts that flow from positive and grateful, into negative and hopeless, and end up reality checks that tell me, ‘well, you’re making progress‘. This is a mantra in my mind daily and I have to keep reminding myself that the mantra once was simply, ‘you’re getting worse‘. Continue Reading

Reality posts on my Chronic Pelvic Pain Story Facebook page

Author:

Recoup Off To The ParkI thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.

Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of  ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.

To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page. Continue Reading

Soula and Theo interview on Gail Zahtz’ Health and Design blogtalkradio show

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Gail Zahtz PromoFor those that missed my live interview today with the brilliant Gail Zahtz on her Health and Design blogtalkradio show, you can listen again here.

The plan was to talk art, design, and pain advocacy but we weren’t about to fit all that into two hours, and especially not when Theo joined in to add his valuable perspective about living with someone who has chronic pain. Continue Reading

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

Author:

ShowAndTellHeader
Show and Tell online interviewed me about art and my advocacy for chronic pain and injured workers… thanks guys!

Let us introduce you to Soula Mantavanos…an inspiring artist with a passion for helping others deal with chronic pain. Today we are trying to help her spread the word as far as we can reach to help all those in need…but also, she is an incredible artist with an incredible home…so we thought you might not only like to hear from her but see where she spends most of her time. These pics were photographed by the wonderful Sean Fennessy and produced by Lucy Feagins of The Design Files.

Soula has been forced do deal with crippling pain since her fitball burst and caused her to fall on a concrete floor. She is now dealing with chronic pelvic pain which is more specifically known as Pudendal Neuralgia (PN).  Soula is now advocating and working tirelessly to help others through her website.

We sat down with Soula to hear all about it, check out the links she has provided and share where you can! Ohhhh and enjoy her gorgeous home!!

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.
Continue Reading

The Hurting Strings, my crowd funding campaign

Author:
Campaign message

Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.

One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.

Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.

Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.

Thank you.

The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.

Doug Moran National Portrait Prize Semi Finalist

Author:

Communicating pain…

Self Portrait, Art and Chronic PainAbsolutely gobsmacked at this achievement, and incredibly confused at the same time. Who would have thought a horrifying life changing event could bring so much reward. Nevertheless, I’m going with it and am stoked to be considered for semi finalist. Self Portrait (art and chronic pain) will be heading up to Sydney next week for the next round confirming finalists for the National prize.

View all the semi finalists here, read more about the prize here and view the 2012 finalists here.

About the portrait

A self portrait of a self portrait. A marionette is the only way I thought to express my living with chronic pain. I lost my independence and yet the debilitating qualities couldn’t be seen on my exterior. No one could grasp my torment by looking at me, in fact I looked ‘well’. I lost my control in life and the pain directed my days for many years… for some days it still does.

This painting of me as a marionette, I believe, is a fitting self portrait of me, perhaps even for anyone else with any kind of invisible pain.

Currently this is how I see myself but I remain hopeful that this image will change one day.

Follow the pain story: facebook, rss, twitter.

On A Current Affair tonight!

Author:
A Current Affair

A Current Affair Continuing on with my awareness for Pudendal Neuralgia and all things pelvic pain, I didn’t pass up the request from A Current Affair to speak about nerve pain and my experience with it and its treatment, predominately focusing on the peripheral stimulation implant. PainAustralia who have become a great support for me and who recently interviewed me for this story; Social Media for Pain Education were contacted initially by A Current Affair asking if they could recommend anyone who had nerve pain and had found relief from a stimulation implant.

Admittedly a little weary of ACA’s style of filming and my preference to not impose my pain onto others, I still agreed realising I could reach many chronic pain sufferers and also give them courage if they were considering a stimulation device implant.

So, here I am, and tonight there I will be, on A Current Affair in all of chronic ‘neuro’ pain’s putrid reality and sharing the modern chronic back pain treatments that truly did save my life and now have me living again. I’m hoping they won’t cut out the emphasis I made about my Theo treatment, he truly is my largest form of pain relief.

And while I have this great opportunity to raise awareness relating to chronic pain, I’d like to add that in no way has my WorkSafe Insurer contributed to any of the costs for this life saving, $60,000 device. I’ll be forever grateful to my private health insurer who forked out a whopping $54,000 of the expense. All other medical costs relating to my injury including the $6,000 gap for the device (and any treatments over the last two years) have been seen as unrelated to my work injury by the WorkSafe Insurer. The implant in particular was not covered on account that my Neurosurgeon’s letter was seen as insufficient. Below is a copy of my surgeon’s letter to my WorkSafe Agent case manager (without personal names) and the snippets of correspondence relating to the matter (I have loads of paperwork but basically this sums up the support (not) from WorkCover: Continue Reading

The Pelvic Pain Library

Author:
The Drawing Wall At Ooi

Here is my attempt to gather all references I’ve come across or that I refer to on my website for Chronic Pelvic Pain. Clearly nowhere near all the references that exist but at least one ‘library’ location with a bundle of great material (and one organised website!). If you’ve come across a resource that you think should be included, please contact me and if you are an author and have an update or other information to provide, I’d love to hear from you.

I know how frustrating it is to have to sift through pages and pages of the internet, I thought this could be of help to pain sufferers who simply don’t have the up time.

And a huge thanks to everyone who replied and supplied me their updated material. Obviously I plan for this page to grow and somehow I will keep it in some kind of legible order. Currently in alpha order by author and title of their publications, perhaps as it grows, we can list by subject. 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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