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My_Space, My facade, living with Pudendal Neuralgia

My_Space, My facade, living with Pudendal Neuralgia

Soula Mantalvanos2017-12-11T13:46:29+11:00May 9th, 2013|Blog, Creativity, Print|

We 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). However this media attention and the snap of me in Sunday's weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with. We are all judged on our facade... and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously 'no'. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that's no surprise because even I can't see it! Theo puts it well, "I can't understand Pudendal Neuralgia but I believe Soula".

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Next stop: Traditional Chinese Medicine with Raffaele Vavala

Next stop: Traditional Chinese Medicine with Raffaele Vavala

Soula Mantalvanos2023-02-17T10:32:01+11:00March 14th, 2013|About, My treatment|

Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of [...]

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Peeling onion layers… “No.6!?”

Peeling onion layers… “No.6!?”

Soula Mantalvanos2017-12-11T16:49:14+11:00March 4th, 2013|About, Blog, Learn, Personal resources|

Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this: Removal of pelvic thickened ligament Peripheral stimulation device implant Diagnosis Nerve blocks Medication … Could [...]

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Italian lifestyle, perfecto for Pudendal Neuralgia

Italian lifestyle, perfecto for Pudendal Neuralgia

Soula Mantalvanos2023-02-17T10:32:01+11:00July 9th, 2012|About, Living|

...So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I've arrived on a very high mountain but had to crawl all the way up over 5 1/2 years. So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas...

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Expired and fallen through the cracks

Expired and fallen through the cracks

Soula Mantalvanos2023-01-24T16:11:09+11:00June 27th, 2012|Workcover|

After a few battles regarding my massage treatments, peripheral stimulation implant and finally receiving a letter form my WorkSafe agent stating I would no longer be receiving medical reimbursements/support, I began a hunt for a deserving explanation... But back to my main point, the answer I was seeking. I called the contact the Hon Gordon Rich-Phillips advised and it led to a conversation with my WorkSafe Agent's Injury Management Advisor (IMA) and for once, I seemed to be having an open and honest conversation with a WorkSafe Agent employee. It's hard to say it was honest because this system has taught me not to trust anyone, sadly. It felt like a great relief to be speaking to an educated, intelligent, experienced and capable person... I didn't get invalid and poor excuses or worse still, lies. Every point I made was dealt with and the conversation was about me, my case and my specific issues... ...the grand finale was that the IMA was going to answer why my medical expenses support had ceased?

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The Pudendal Neuralgia Masters and Their Support for my Website

The Pudendal Neuralgia Masters and Their Support for my Website

Soula Mantalvanos2017-12-11T11:00:40+11:00April 20th, 2012|Help, Professional|

I can't adequately define the moment I was diagnosed, it's just too difficult to explain the 4.5 year scattered hunt that ended with a few seconds and just two words! Empathy and understanding however, are two words that do explain what I felt when seeking approval to use the research and names of the Pudendal Neuralgia Masters (as I like to call these specialists). Honestly, if words, thoughts and care from complete strangers could heal me I would have been healed twice over by now. These Masters really touched my heart (unfortunately not my stubborn pudendal nerve, but all in good time!). I wanted to share these comments, especially for anyone suffering with Pudendal Neuralgia as I feel its important that we all know who these incredible human beings are and that they are endlessly working towards our cure and international awareness every day. The other important thing is to know where they are.

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My family, Theo, Origin of Image and Zephyr

My family, Theo, Origin of Image and Zephyr

Soula Mantalvanos2017-12-11T11:28:17+11:00January 23rd, 2012|About, Creativity, Living, The pain|

There isn't one single reason I can give for 'coping', I think a few things play a role. The biggest of all, I believe is my own brain's chemistry and built in ability, something I don't believe I have control over and was born with (and how greatful I am for this ultimate survival gift!), but coming in second, or even on par, is my husbandly support, Theo. I don't know what I would have done if Theo hadn't understood my pain and my eratic injury and hadn't supported me 200%. Seriously there were days I thought I was crazy...

Glossary

Soula Mantalvanos2017-12-09T15:11:47+11:00January 23rd, 2012|Learn, Personal resources|

avulsion The forcible tearing away of a body part by trauma or surgery chronic A chronic condition is continuous or persistent over an extended period of time. A chronic condition is one that is long-standing, not easily or quickly resolved [...]

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‘Chronic Pain Disorder’ medical panel opinion?

‘Chronic Pain Disorder’ medical panel opinion?

Soula Mantalvanos2023-01-24T16:11:09+11:00January 21st, 2012|Workcover|

What does it mean? From what I've gathered it basically means big general pain bucket and, its time to update the Wrongs Act 1958. And I'm stating very obvious information here because our Government has missed a very small detail... its 2012!!! ...Hello, anyone out there? If you are, it's time to update the Wrongs Act of 1958. Injured workers have injuries that can be addressed more appropriately, giving them a greater chance of getting back to work and lessening instances of permanent damage if the practitioners in the system can identify and use current information. (Or are you waiting for the 50 year anniversary?!!!)

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Down the hole: a descent into painful isolation

Down the hole: a descent into painful isolation

Soula Mantalvanos2021-02-24T10:28:34+11:00November 25th, 2011|Advocacy, Creativity|

Chia Moan's painting Shrinking World aims to shed light on the effects of living with severe and persistent pain. Moan was among artists who spoke to pain sufferers and says she remembers one patient who said she felt like Alice disappearing down the rabbit hole, with the opening at the top growing smaller and smaller.

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