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(Sing with me, to the tune of 'The 12 Days of Christmas'': 16 points of stimulation, multiple case managers, too many Independent* Medical Examinations, 9 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...
I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.
Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison!
The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%.
I was asked to present my story as honest as possible and in my own words and pictures.
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. I think what tipped me into advocacy was the 4.5 years it took to find a diagnosis and the near miss I had with living out the rest of my life in horrific pain levels if I’d not investigated further. My chronic pelvic pain is more specifically known as Pudendal Neuralgia (PN) or Pudendal Nerve Entrapment (PNE). This is more simply put as Carpal Tunnel in the pelvis. Where Carpal Tunnel affects the hand signals and hand movements, Pudendal Neuralgia affects our biggest pelvic nerve which controls toilet and sexual signals and functions. The pudendal nerve runs under pelvic ligaments and muscles and is attached to nerve roots in the lumbosacral spine so it can be disabling. It feels like that core part of my body has a toothache or as if I have my finger stuck in a powerpoint. BUT, I’m happy to say I’m in a much better place now and that’s why I want to share my story. I believe if I was diagnosed within 6 months of my injury, I would not have this issue now and that makes me want to reach everyone with undiagnosed pain that may be suffering from PN. I’ve also been drawn to advocacy for injured workers since I’ve now had first hand experience with the WorkCover system and its limitations for understanding, assessing and treating chronic pain. In fact my chronic pain issue was not assessable for compensation. Its score was rated at 0% impairment. I’ve also submitted many complaints and questions to WorkSafe and associated organisations, I’m making a heap of noise on social media and gathering a great group of people in the hope of making a change. A network exists now, encouraging other injured workers to speak up, forming communities for support where there were none previously. Injured workers can now vent, speak up, be heard. Social media has provided a voice and is our legs (even when we physically can’t move). So in the process of advocating for PN/PNE the biggest tasks are to change the judgment and misunderstanding of ‘pain’, and misconceptions of the term ‘injured worker’.”
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 [...]
It's been a while since I posted a personal update but it's probably accurate to say that PN's weather patterns need to be documented seasonally. I mostly have turbulence, like it's sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It's incredibly frustrating. So rather than report all the fluctuating details in between, it's best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula's PN weather update for September 21, 2013.
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".
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 [...]
...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...
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?
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.
