About Soula Mantalvanos

“I felt I had lost my independence, I could not communicate and express my personal experience and that no one understood me.” Soula combines her many years of chronic pain with her professional design experience to advocate about misdiagnosis and injured Victorian workers. Soula founded pudendalnerve.com.au and PainTrain My Health Summary to help raise the quality of care for those enduring and treating chronic pain.
July 4th, 2012 5:37 pm

To block or not to block…

By |2023-02-17T10:32:01+11:00July 4th, 2012|Categories: About, My treatment|Tags: , , |

.... As documented many times with this condition, treatment isn't just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It's like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I'm travelling blindly.... I began to really struggle 12 weeks after the first block and even during that time I had a few flare ups. I wondered if my implant perhaps had interfered with my nerve block as it's known to cause pain if you keep it on whilst the pain is at a low-level (yes, try to figure that one out!!) By the time I realised my nerve block was well and truly wearing off I was at the 14 week mark, and having been very excited with what relief I had, Theo and I booked a holiday to Italy. Thankfully the brilliant Dr Courtney was able to fit me in for another nerve block at the 19 week mark which was exactly two weeks before travel time. Why am I mentioning the holiday? Because I believe a nerve block needs support, it needed me to get out of the pain routine and team it up with as much distraction as possible... I felt my brain would freshen up, have a new shot at life and not have to face my day bed, aids, daily pain routine etc etc. I set off to live a dream in hope distraction would bring a positive change and another step forward...

June 27th, 2012 12:26 pm

Expired and fallen through the cracks

By |2023-01-24T16:11:09+11:00June 27th, 2012|Categories: Workcover|Tags: , , , |

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?

June 21st, 2012 10:46 am

Me, a case study! Pudendal Neuralgia-Masters Coursework

By |2017-12-11T16:22:48+11:00June 21st, 2012|Categories: Learn, Personal resources, Workcover|Tags: , , |

The condition and existing barriers to management and practice My understanding of a 'syndrome' is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can't seem to penetrate its existence in Western Medicine's Bible, and so it is unrecognised, misunderstood or ignored. So when my physiotherapist at The Women's Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover's understanding (not) and treatment (not) for injured worker's with the issue. Thank you Alesha Sayner and The Women's Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!

May 23rd, 2012 11:26 pm

A Dream Came True Today

By |2017-12-15T15:55:19+11:00May 23rd, 2012|Categories: About, Living, The pain|Tags: , |

What’s also revealed here is the origin of our Jack Russell’s name, Zephyr (who is actually more like a hurricane), but… back to my life moment, back to one of the big, completed circles of my life… I was moved completely. So moved I couldn’t move, stuck to the floorboards with only one way to go, closer, if only everyone else would get out of MY way!! I almost felt I had a special right after loving the piece for most of my life, painting her, drawing her over and over. I almost couldn’t understand why no one could see these facts, and why didn’t they all also know I was the one with the tattoo of Venus on my tail? I contained myself, I was in danger of setting off the alarm and for the life of me wasn’t about to live down to Theo’s expectations...

April 26th, 2012 1:07 pm

Now let’s get this straight…

By |2017-12-12T14:48:53+11:00April 26th, 2012|Categories: About, Blog, Living, The pain|Tags: , , |

So, you think you can see pain hey? Or rather your understanding is, if you don't see it then it's not there? Please read on because people like you drive me a little batty... "Pain is invisible!!!"... ...I know, I know, it's shocking and many won't believe it, ever, but it's true... Seen me smiling? It hurts. Seen me having coffee with a friend? It hurts. Seen me walking up the street? It hurts. Seen me having a glass of wine? It hurts. Seen my online social activity? It hurts doing that. Heard I went away for the weekend? It hurts... more. Did I email you? It hurt...

April 20th, 2012 3:01 pm

The Pudendal Neuralgia Masters and Their Support for my Website

By |2017-12-11T11:00:40+11:00April 20th, 2012|Categories: Help, Professional|Tags: , |

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.

April 11th, 2012 4:35 pm

Exercising the Brain

By |2017-12-11T13:02:22+11:00April 11th, 2012|Categories: Learn, Personal resources|Tags: , |

...I feel I'm exercising my brain when I read an article that sparks more thought and leads me on a hunt for more and more information and the process all results in gold! It might not necessarily be what I was looking for but a lovely surprise nevertheless... It made me think about another possible cure for my issue (I know, very far-fetched but imagine if my brain could be programmed to make me live/dream all the activities my pudendal nerve won't let me do by night?! Imagine?!). So I went to my favorite, most trusting online resource, no, not Google, Body In Mind...

April 10th, 2012 8:20 pm

Case Management Society of Australia… are WorkSafe Agents complying?

By |2017-12-11T16:14:01+11:00April 10th, 2012|Categories: Workcover|Tags: , , |

What would injured Australian workers do without the wonderful WorkCoverVictim'sDiary website, who alerted me to the Case Management Society of Australia(amongst some other goodies like 'the Deed' between WorkCover and all the Suppliers of delivery of the System!!! and The Ombudsman's report that shows the many breaches... hello, hello!)... One 'ethical' point:

  • The Case Manager will consider the best interests of the client as paramount at all times
In this point, is the 'client' the injured worker or WorkSafe? From my experience, it's clearly WorkSafe and when it comes to this ethical standard, my case managers are right on the money! No treatment for me, more dollars for WorkSafe...
March 23rd, 2012 6:31 am

Thanks Erin Brockovich for supporting injured workers

By |2017-12-11T15:59:44+11:00March 23rd, 2012|Categories: The pain|Tags: , |

It's starting to happen, there's a little stir... injured workers are speaking up. And they're getting noticed. Thank you to the brilliant WorkCoverVictim (and my cyber friend - well how else to injured workers meet!?), and your team for supporting injured workers through your brilliant website. You deserve your visit from THE Erin Brockovich... Erin Brockovich, you revived some injured workers today. THANK YOU.

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