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”.

For the split second of the portrait though, (goodness, even I keep looking at it quite enjoying the scene), I’m sitting on my non sore side and my wrist is about to snap because all my weight is pressing on it. Regardless, I allow myself to dream that everything is exactly as it seems in the picture… 24/7.  I get to dream for just another second before my pelvis reminds me that the hard working, happy snap is instead made up of Theo’s daily help, my limited activity, the Peripheral Stimulation device, nerve blocks, medication, remedial massage, traditional Chinese herbs and now, an adjusted home to suit… (I won’t go into the ‘I don’t, I can’t, I avoid, I won’t’ activities).

(Let me clear my throat)… And now that I’ve posted my whinge, I’ll go back and have another look at my happy portrait snap of ‘our space’. This time I’m grateful that I even have an able facade, one that others can think is O.K. and oozes full time work… even if it takes the both of us and an invisible premium pain package

Most of you know, I have a love for character. Recently, I had also been influenced by our trip to Italy and all the Pinocchios and beautiful Venetian masks. Add to this the time I’d been desperately waiting for, the time when the pain would subside and allow for a new phase of life to begin, and my project formula was taking shape – finally! Happiness, character and a big story to tell.

• Happiness. Obviously related to my wellbeing. The huge leap in ability and independence that had finally arrived thanks to a last year of great treatment.
• Character. A marionette, portrayed as me, Soula, in my favourite Gorman dress, Trippen boots and Fiorina earrings.
• A big story. Over half a decade of my lifetime searching for a diagnosis, a treatment, suffering the loss of independence… someone else was ‘pulling my strings’ but all the while I looked ‘normal’!

I had tried to paint myself in pain but it was deeply upsetting. It would have also been concrete documentation – forever – and that’s the last thing I wanted to do with this pain. Immortalise it. The pain wasn’t staying. It wasn’t forever, and there was no way I was going to make it mine. My artwork takes me to happy places, but of course I couldn’t ignore these years of my life.

So, it’s over to Ms Soula for pain now. She’s going to be handling the stories of pain, she will be communicating her loss of independence and control of her life, she’ll sit on her leg so her coccyx hovers unpressured, she’ll seem ok, she’ll seem happy and she’ll show everyone that we can’t see pain in life and that often our exterior bears no resemblance to our interior. And I can stop wondering, why no one can see my excruciating pain and move onto my healing process; painting and drawing portraits of Ms, moving forward and towards my great old life as artist and designer.

Ms Soula has been made by Colleen Burke, an artist of many talents and with incredible ability for achieving likeness (quite obviously!). It was such a pleasure to work with Colleen and she realised exactly what I had in mind. Ms Soula’s hands and face are made with apoxie that gets fired in an oven. Her body is of some divine old wood. She has a wig of hair that had to be dyed and trimmed, her eyes are marbles and lightly glazed as are her lips. Her boots are real leather.

And in case anyone is wondering, my medication doses are just fine!

(excerpt from soula.com.au/blog)

(Photography Marija Ivkovic, marionette made by Colleen Burke. Creative director Soula: How do you Communicate Art, Design & Chronic Pain)

(Photography Marija Ivkovic, marionette made by Colleen Burke. Creative director Soula: How do you Communicate Art, Design & Chronic Pain)

I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I’m hopeful again and thinking I was in some kind of a flare. I can’t expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I’ve got to expect at some point the body is going to say, ‘hang on love, you’re lifting too much milk!’

So I presented this fear to Raffaele who directed his acupuncture closely around my tail this time. It immediately made me think of my previously named, ‘fatty tail’ and I thought to ask what a white looking coccyx says to Traditional Chinese Medicine since Western Medicine puts it down to fatty tissue or the difference between being a brunette or blonde (yes, I know what you’re thinking, I’m a brunette with a blonde tail). Well Raffaele said otherwise, ‘We see this on an MRI quite often after a woman has given birth, a trauma to…’ I finished his sentence, ‘the pelvis’. AAAAh, did you feel that? The weight lift off my tail, the closure and acknowledgment? Raffaele elaborated, ‘The tissue presents differently…’ Oh bliss, BLISS.

So there you have it for all those surfing, as I did, in search of ‘white coccyx on MRI’ and ‘Dr says fatty tail’, this post is for you! (And obviously very much for me).

An incredibly effective form of communication for Internal Cystitis (IC) and Pelvic Chronic Pain.

Certainly captures everything I’ve felt and everything I hope; release those chains! And how true that they are depicted with such weight. Absolutely loved this. Donna Massa-Chappee congratulations. Thank you for expressing this so clearly, for your understanding and for taking the time to help others.

Watch the YouTube movie: Interpretive Dance about living with IC & Pelvic Pain

Artist’s statement:

An interpretive dance using the combination of modern dance and classical ballet to express the trials and tribulations of living with Interstitial Cystitis (IC) and Pelvic Pain Disorders. It is about a women who has been diagnosed with IC and experiences an incredible dream. In her dream she relives every emotional detail of fighting through chronic pain: frustration, isolation and embarrassment. During the dance there are symbolic props used to identify with the symptomatic problems she endures when dealing with these disorders. In the middle of the dream the woman surrenders to acceptance, letting go of its grip, and moves on to the final stages of the healing process resulting in joy, happiness and freedom. In the finale of this piece, during the awakening stage of her dream, the woman expresses an uplifting revelation of bliss, for there is no more anguish and pain or the chains that once bound her…

This Dance Video was created to inform and inspire all the many young girls and women throughout the world who suffer with these debilitating disorders, and to know that there is truly a rainbow at the end of your horizon. For information regarding this video please view the credits at the end of the video, they are important! Please share this video and spread awareness…

In Peace, Love & Unity

No one has ever documented or treated my condition appropriately, no one seems to know Pudendal Neuralgia, it seems like it’s not part of the guidelines that Independent Medical Examiners are required to assess against. And I also find that no one reads or acknowledges the reports and treatments that I provide that have helped me with Pudendal Neuralgia. When I call my case manager, their view is to dump my Physiotherapist’s treatments and letters into the ‘gynecological’ bin. Yes, a bin… sitting within the dumpster of ‘Pre existing/not related condition’. Well that’s unacceptable for me or any other injured worker.

My research and wonderful cyber friends have furthermore revealed, that Pudendal Neuralgia (Chronic Pelvic Pain) doesn’t actually have a form of accurate rating for impairment or disability either! No wonder I’m left at the age of 43 with no financial or treatment support (to be specific: I have a very rough 3 hours a day working capacity that mind you, is made up of a unique home setup with essential hourly help by my wonderful husband, varying seating arrangements, ability to lie down whenever, distribute the three hours a day over the course of a week, month however suits my pain levels, time off as required, no lifting, no shifting, no deadlines, and employing someone to do the work in order for me to attempt some form of Direction… I’m taking a huge risk here).

So, with the help of my cyber (and very knowledgeable) friends I firstly gathered the info and wrote a letter to WorkSafe, Safe Work Australia and to the Hon Gordon Rich Phillips. I’ve also set up a LinkedIN group to help change this situation for Injured workers with Chronic Pain. I know, you’re all thinking ‘she’s mad and she’s dreaming’ but I can’t rest until I do my bit. I can’t fathom the thought of injured workers at home, with the pain levels I experience who may not have help and are lying in bed, as did I, wondering how they will dress, clean and feed themselves each day, who also have to address a letter from their WorkCover insurer that states their financial support or treatment support is ending. Nope, sorry, unacceptable. Isn’t this Australia?

I’m still waiting for my reply but in the meantime can you all please do your bit and join our group? Even if you can’t contribute this is a place where your presence may count. Please help us change this horrid Assessment method and head to this link, (you may need to create a LinkedIN profile if you don’t have one) and join the group:

The consultation methods make great sense to me. My scans have been considered, but my tongue, palms and pulses on both wrists do all the pain and story telling. These body parts describe a system that is quite debilitated after dealing with the years of Chronic Pain, an issue Raffaele understands in-depth. So when I speak of sounds hurting, activity accumulating into a flare up fire-ball, fluid retention, my legs unable to move with extreme heat conditions, the desperation for Western intervention in the form of an implant and nerve blocks, my exhaustion that arrives with the pain and ‘protects me’ by encouraging me to sleep, the inability to focus, reach out and ‘just move that thing’ or carry out a simple task, the ability to create seeming too exhausting, Raffaele understands… ALL OF IT.  He reminds me of my diagnosing physio, and for once I’m the one staring in disbelief at their look of complete understanding for me (when other practitioners screwed up their faces or frowned at my statements).

After four weekly consults, I’m beginning to feel ‘bits’ I’ve not felt in a long time. This week we’ve started to talk ‘sweet’ mechanical pain (I know ‘sweet’ sounds quite mad but remember I’m entitled, chronic pain and depression go hand in hand…). What I mean by ‘sweet’ is the ache, pinch, poke, stab, pulling of pains that make me feel alive! I have a body finally able to tell me to MOVE IT! It’s telling me my muscles are waking, they’re slow, lazy and need to get stretching, a word completely avoided for the last six years because it was always followed with ‘flare up’. And as terrified as I am for fear of provoking a flare up when I’m completely focused on getting past my 5-6 month target with my current block, I’m going to try subtle stretching. Walking seems to become painful after 15- 20 minutes and I reach straight for Theo’s arm but I’m hoping this is weakness in my lower back and with strengthening the achiness and shooting down pain will resolve.

I’m feeling my legs have dropped, my pelvis cool, I’m feeling a relaxed wwooooobbbliness and from the herbs I’m given some much-needed energy has kicked in… and it’s bliss. When I have pain now, I can still think and plan, I’ve even managed to be a bit more creative which is like a miracle to me. Yes, I’m in all sorts of sitting positions but I have stamina to make it past that where before the thoughts of shifting position every few minutes were enough to tire me. Compared to how I was, I feel like Wonder Woman (if only I had her magic rope!).

I’m also happy that Raffaele hasn’t insisted on treating me for depression and that he understands I don’t have depression. I even got an answer for ‘Why didn’t I get depression?’ and it makes complete sense. I’ve always had a hunch about creativity and it being one of life’s biggest survival mechanisms. When you think of anyone losing their connection to the world, (their work and social abilities in many cases) through an injury, what connection to their world is left? But my connection, creativity has remained throughout, even if it’s one scribble or a journal entry, it’s my way of life and although extremely affected, I still had it. It kept me thinking, stimulated, planning, the mind was distracted and socialising about my art or for art on the internet was a great social outlet. Of course the best social outlet was my walking, even though minimal but I was still able to head up the street.

So I’m having weekly consults for now, I’m taking herbs extracted from unheard of vegetable roots, seeds and flowers and I’m hoping this treatment will give longevity to my nerve block (actually I hope I never need one again!). But most exciting of all is that I’m left to ponder this question from Raffaele, ‘What will you do when this is over?’…

Raffaele Vavala consults from 4a Mitchell St Northcote VIC. His number is 9489 4483 (but please make sure there’s an appointment space left for me when you book!!!)

The first note must be of thanks and of course, has to go to my husband Theo. Without Theo’s daily help this site simply wouldn’t be up and running…. neither would I!

Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I’ve made in the past year. I’ve met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue in the hope of resolving it (and not just for my sake), and/or try to voice my improvements for an ignorant WorkCover system.

As far as my personal one year status goes, I definitely have ‘progress’ to celebrate; I’m running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep and in much less pain. Although I’m still much limited with capacity and rely on daily help and regular massage, I’m able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon.

Here are some more specific, but also saddening, statistics that may be of interest to my subscribers and visitors (and my very loyal spies!):

Top country visitors:
Australia with 8,564 views
United States with 5,977 views
United Kingdom with 1,795 views

Top 10 posts:
Anatomical images
The Pudendal Neuralgia Masters
To block or not to block…
The way relief started
My list of practitioners
Physiotherapy at the Women’s
Males with Pudendal Neuralgia in Australia
The big bang injury
ABC 1 Catalyst: The Trouble with Sex
Now let’s get this straight…

Top search terms:
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Saddest search terms:
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The worst search term of all:
pudendal pain gonna kill myself

Onwards…

Thank you to all of you for reading and for your wonderful messages. Practitioners please keep your knowledge coming. I’m now off to write to Safe Work Australia regarding their ‘fair’ assessment approaches and the limitations of Independent medical examiners in the WorkCover system.