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About my website

Author:

Hello, welcome to my website. I hope you’re not in pain but if you are, this website was created to give hope to people like you and also to educate those who treat people with chronic pain.

My name is Soula, I literally fell into the land of pelvic chronic pain, specifically Pudendal Neuralgia (PN), on March 1, 2007 when a fitball I was sitting on burst and I fell to a concrete floor whilst working at ooi, my art & design studio that I run with my husband Theo.

Soula & her marionette, Ms Soula

I am an artist and creative director and now also an advocate for pelvic chronic pain and Australian injured workers.

Since 2007 I’ve had an overwhelming emotional journey, one even a creative like myself could ever have imagined.

I’ve self published my book Art & Chronic Pain – A Self Portrait, that I felt could be of comfort, support and an education to those who treat pain. I’ve presented my story to 200 professionals at AIM Pain 2014 with an immense response from professionals, I’ve appeared in a Television commercial for ANZCA, been interviewed by pain organisations and even had The Hurting Strings documentary made in the hope of creating awareness for those who live in daily pain.

But, first and foremost, and what every visitor in pain needs to read, is the fact that I’m conquering PN. Since my diagnosis 4.5 years after my fall, I’ve had appropriate treatment that has been slowly chipping at the PN glacier. And yes, I was living with unbearable pelvic chronic pain that made me feel I had my finger stuck in a power point, it had me sleeping my life away and when not sleeping, in so much pain it was impossible to achieve much at all. I was existing, not living.

Second, this site was instigated because of my very late diagnosis and me wanting to prevent anyone else from experiencing that unnecessary pain and the sense of being lost for an explanation that comes with that experience. A huge thanks to my diagnosing physio who lent me her research and encouraged me to put this website together. Also a huge thanks to those who contribute their information.

And third, I felt Australian injured workers needed some representation also. My experience with the Victorian Workcover Authority (VWA) has been nothing short of horrific. The VWA neglects to support injured workers return to work, the very thing they state they do and the very reason they accept premiums for in Victoria. Rather, this system merely seems to exist to generate funds for itself and only adds to the pain and trauma of an injured worker. Read my rants here, Work & the System.

As mentioned in the disclaimer, my website documents my injury, my treatment (appropriate and not), relevant resources I have found online and also material kindly provided to me, by my treating practitioners, specialists in Australia and Internationally.

So let’s begin..

  • Do you have pelvic chronic pain?
  • Have you had this pain since injury, pregnancy, birth, or some other trauma to your pelvic area? Perhaps you are an elite athlete or cyclist?
  • Does it feel like a toothache, does it itch and gnaw, do you feel like you’re on fire?
  • Do you feel spasms, fluttering and glitchy?
  • Are your toilet and sexual signals and functions irregular?
  • Is there no obvious issue on your x-rays and MRIs?
  • Do you find distraction can often work incredibly but afterwards the pain becomes excruciating?
  • Is the pain often worse after activity rather than during?
  • Do you feel no one quite understands you, your explanations, and your pain descriptions?
  • Have you been told you have a Psychological Condition, and been left to feel like you’re crazy?
  • Do you associate your pain with ringing in your ears and feel you can’t quite pinpoint where it is?
  • Would you say its painful to speak at times and that sounds and speaking hurts?
  • Have you had endless appointments with no relief?
  • Do vibrations, a fright, or bumps send a surge through your spine?
  • Do your legs feel weak?
  • Do you find sitting unbearable?
  • Have you fallen on your coccyx and after years, does it still feel like it happened yesterday?
  • Are you part of an Australian Workers’ Compensation system and feel you are being treated poorly and that the whole system is like a circus?
  • Do you feel the Australian Workers’ Compensation system can’t help with return to work because the VWA Agent treats you poorly?
  • Do you feel the system is out of date and primitive and has no understanding for Chronic Pain or your situation?

Then I sadly welcome you (NOT) to my world. Please subscribe so you keep up-to-date with my progress.

You’ll also find me on Facebook and Twitter

Related Posts

My documentary: The Hurting Strings – An Artist’s Story of Pain

My book: Art & Chronic Pain – A Self Portrait

The presentation of my story at AIM Pain 2014
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
The way relief continued…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
PN Directory: Who can help and Where in the World Are they?

Feedback

14
  • Annette

    Hi there, wow so there are more people out there with the same issue as me. Very comforting to know. I have Neuromas caused from cutting away of extremely bad adhesions during a hysterectomy. I have been suffering for two years now, with no end in sight. I take a ridiculous amount of drugs & am addicted to the Endone. I’m off to a pain clinic next week, who knows they may help, but it’s unlikely. I can’t wait to follow your story. Good on you for trying to get help for others. Cheers Annette

    • Soula Mantalvanos

      Hi Annette, I’m sad you had to find this site. Yes, there are many of us but I’m adamant to find a way out and so far I’m making great progress despite a 4.5 year misdiagnosis hold up. Good luck at your appointment, stay hopeful. xx

  • Kathleen

    So glad to have found you Soula…first on the PN Support Facebook page and then at your website and then on Twitter! I am a fellow PN warrior….have been in pain since 2008…live in Connecticut USA…looking forward to connecting with you all…God bless you for all the work you’ve done to help us all : )

    • Soula Mantalvanos

      So glad you found me too Kathleen! What a beautiful message although sad to hear you’re also battling this issue. We are warriors INDEED. xxx

  • Robyn Stanley

    Hello, I’m sorry you are in chronic pain that is no way to live. I wanted to let you know about Scenar Therapy and to tell you it works but don’t take it from me do your self a favor and find a Scenar Therapist today and experience Scenar for your self. I have been using Scenar in my clinic for 11 weeks now and my clients love Scenar, I have overwhelming results with Scenar, I have been out of pain for 11 weeks after I had Scenar used on my sponderlitious in my back. So please look into it I can’t tell enough people about Scenar. Please email me for more information robsmassagegingin@gmail.com
    Reg Robyn

  • Linky

    What about men?

  • iris

    i am so sorry, I have pudendal neuralgia from a gynecology surgery, deep LEEP (LLETZ) conization. Thank you for creating this website.

    • Soula Mantalvanos

      I am so sorry too Iris. Always terrible to hear someone else has this awful condition. It’s difficult to say ‘a pleasure’ when in regard to pain but your thanks is very heartfelt and I hope it has been of some support to you. Take care of yourself.

      • Arlene Jones

        Arlene Jones
        YES to all your questions. Thank God others understand or I would go crazy!

    • liz

      IRIS, PLEASE ANSWER ME, i need help…which are your symptoms???? pleas

    • Bec

      I feel that I may have the same problem with a few different issues. Mine seems to stem from a vaginal hysterectomy 7 years ago,now the symptoms have ramped up and I feel like there is something stuck in the rectum all the time and a very sore coccyx. This condition is changing who I am and causing me to find no pleasure in life at all with no motivation to do anything but try and get comfortable. Are you still getting treatments? I live in the country, my closest major ity is Melbourne, so am hoping to come down after going to the dr AGAiN.. Thank you
      Bec

      • Soula Mantalvanos

        Hi Bec, I’m sad to read your comment. This pain certainly does change who we are. Are you able to book in to The Womens Hospital Pelvic Pain Department? Ask for an appointment with Anne-Florence, you’ll need a referral from your GP and to book way in advance. Also, if you feel like joining a great forum, head to pudendalhope.org. You will find much empathy and understanding there. Good luck, stay positive, this is treatable and you will recognise yourself again… I have!

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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.

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