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Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

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AIM of Pain 2014 from (OoI) on Vimeo. Or read the speech below.

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 offered to both Theo and I was 100%.

I was asked to present my story as honestly as possible and in my own words and pictures. Having had the design experience with events through OoI, our design studio, the process was familiar and so was the environment on the night of the dinner. With Theo’s help it was becoming a reality. I began writing my speech. I had 25 minutes of speaking time, I pulled together images for a screen presentation that would give more insight while I spoke, a portrait of Ms Soula was finalised in preparation for her move (I’d never be able to get her back into the same pose!), and it was back to Clark Rubber (my favorite store) to buy as much ‘supportive’ material as possible for my transit seating and Ms Soula‘s in-built bed in the carry on luggage.

The audio won’t be released for a while so I thought I’d put the presentation together which you will have to read for now. You can view it above with the screens presented on the night, or at the end of this post as text with any relevant links included. For those who are lazy, I’ll update the post as soon as I get the audio, you’ll have to pop back later, it may be a few weeks.

I would also like to add the very valuable question time when the talk finished. One of which was ‘What was the worst thing and the best thing you’ve heard from a practitioner?’. My answer to this was (from memory!) the worst was, ‘Take responsibility for your pain, go home and never investigate again. The best thing, was from a very huge support of mine, John Quintner who emailed me to wish me luck before I left and said, ‘Remember Soula, you know more about pain than anyone at that seminar’. I hope we’ll meet one day.

I’m sure I’ll be adding to this list but to write a very long story in a short post, I’ve chosen to do it this way:

What came out of the presentation

The good bits:

  • That so many medical professionals were attending a seminar focused on pain, building their knowledge and education
  • That there was acknowledgement that there is nowhere near the appropriate time allocated for pain education and that there is a great need to change that
  • My unfortunate experience was put to such a great cause
  • Not being able to finish my dinner, being stopped in the lift and at breakfast to be acknowledged and thanked for presenting my story, for facing the vulnerability and pushing through pain
  • Having been able to tell 180 professionals that the WorkCover system is primitive, and hear one practitioner stand up in a workshop the following day to say insurance can in fact be a ‘controlling factor’ in a GP’s approach to the patient’s pain management, and not an ‘uncontrollable’ one (of course mammoths of time are required!)
  • The follow-up emails, one in particular again thanking me for my presence and stating: ‘We are trying to teach our registrars and students to listen to the patients history and actually hear what they are saying’
  • That everyone acknowledged Theo and his support, and that they wanted to hear more about the role of the partner in pain
  • I coped and participated, I managed (regardless of the great help required), a year ago I would not have been able to even consider this
  • I felt I had a strong voice for others with chronic pain, and for injured workers
  • I contributed to pain medicine research, I felt I had value and worth despite my limits
  • I connected and expanded my pelvic pain network (in particular meeting Dr Susan Evans and Dr Tonia Mezzini from pelvicpainsa.com.au
  • I enjoyed presenting creativity to the medical world and hearing their most positive feedback, some attendees even referring to my presentation as ‘the highlight’.

The sad bits:

  • That I have a story to tell (would have much preferred not to get this invite)
  • That without Theo these opportunities are not possible for me and that Theo’s life has changed so much
  • I had 5 mammoth naps, up and down between meals and events so I could get through the effort required to commute, present and to attend Sunday’s workshops from 10:45am-1pm. The furthest from the hotel Theo and I got was one block. For me to ‘perform’, function, be able to speak and cope with this level of articulation and angst there was no other activity option, I was in varying pain levels during every meal and Theo had to do everything
  • Pain management is not given enough time during med school
  • That it’s a new concept to ‘listen to the patient’ more
  • The Friday business lunch crowd and everyone’s ‘up and go’ swift movements registered as a dream for me, in fact almost amazing
  • We took five steps towards the hotel bar after the event wanting to have a quick cheers but the music was so loud I could feel it in my pelvis. We turned back to retire to our room.

The aftermath…

…has been brilliant. My value and self-worth has been restored. I feel part of the world again, and that I have a voice that I can use for an incredibly worthy cause – to represent other unheard voices with chronic pelvic pain. It’s so wonderful to finally feel I can give back to the universe, a crucial life factor for me.

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The Speech for those not wanting to watch the lengthy presentation

Thank you, I’m so happy to be here although would prefer not to have a pain story to tell. I have a 7 year pelvic chronic journey to portray tonight and I use the word portray as I am a visual artist and creativity is at the core of my life.

I had a workplace accident that left me injured and lost for 4.5 years searching for a diagnosis. As I said, I’m happy to be here, happy I can tell the story of my physical and emotional pain that I now translate into advocacy and some very cathartic creative expression.

Before I head further into my story, I’ll just briefly touch on the marionette so you’re not left wondering how many drinks you’ve had.
She is in fact meant to look exactly like me. I’ll get back to her later.

Let me begin…
My husband, Theo, (who’s up the back tonight operating the screens that will give you a little more insight) and I, shared a life which included our 10yr graphic design business, Origin of Image in a home/office warehouse setup in the arty hub of Collingwood, Melbourne. We travelled overseas every year and enjoyed long drives on the weekend, a very full social life with family, friends, work and community functions. When I wasn’t in the design studio you’d find me in the art studio or practising my exercise rituals.

I always had an abundance of energy, ideas flowed endlessly through my head and I executed all of them. I had no limits, I had no pain,
I had no health issues.

And now, why am I standing here today? It all began March 2007.

I sat on a fitball in our design studio, conscious of the risks of office sitting position but in March, 2007 that antiburst fitball burst and I fell on to our concrete floor. I also fell into the confusing and most disorientating land of pain.

To make matters worse, no one could explain my chronic pelvic pain and by ‘no one’ I mean the many physiotherapists, two GPs, a rectal surgeon, orthopaedic surgeons, chiros, TCM’s, etc etc. Just who didn’t I visit would be easier to document. I began to lose hope and it was clear we had to hibernate our design business. Theo went to work for an advertising agency. Being at home without his help was horrific.

I dreaded the postman delivering a heavy parcel (if he was patient enough to wait for me to get to the door).

During this time, a sensory pain that felt like I had my finger stuck in a powerpoint, took over my life. I was prescribed a cocktail of nerve pain inhibitors and anti depressants and shrunk to a small portion of myself. But in came creativity…

Whilst visiting our local cafe, I met Lynn Savery who dressed in 30s and 40’s vintage and was in the middle of writing a book (yes, in the cafe!). She noticed I hobbled up one day and asked me ‘what was wrong?’. Within a few weeks, and a little more conversation, she arrived on my doorstep with a pile of research on my chronic pain condition and a home-made lasagne stating, ‘you’re going to need some help’.
Lynn spent valuable time with me in my daily zombie state, chatting away while I took photos of her that I used in my snippets of “up time”
to make a body of work that was later exhibited.

Needless to say, Lynn is one of my dearest friends today. Lynn didn’t judge me, she believed me, she listened.

I lasted about 6 months on the cocktail of meds, then I gave in. I needed to know who I was and that meant not having spell check on my computer and knowing how to cross the road, the pain levels soared again, my sensory pain escalating to the point where I could not stand barefoot, apply any pressure to my heel and any vibration or loud sounds sent me into a flare up. I slept 3 hours during the day trying to ‘reboot’ my nervous system, it was the only way to stop the pain.

Two years post injury, April 2009, I thought to check things out with my gynaecologist and we stumbled upon a thickened rectovaginal septum. The extraction of this septum relieved most of my sensory pain and simple pleasures like showering bare foot returned to me.
It wasn’t too much longer when I experienced the analogy of the onion and its pain layers.

I had shed one of them and another seemed to surface, a pain that I had felt before but was not so prominent, it was a toothache like pain throughout my backside, building to a point where I struggled sitting and standing.

A series of diagnostic injections indicated I had probable neuropathic pain. Within a few months, I was at my wit’s end asking a neurosurgeon to chop my coccyx off. I’m thankful for his professional advice, he suggested we try a peripheral stimulation device. I am now happy to report I have 16 points of distracting stimulation and that a small, very powerful magnet operates that implant.

It will also pickup your cutlery as I walk past your table!

Most of all, this peripheral nerve stimulation device, brought me back my senses. It brought me back to life. The pain levels dropped, I had a little increase in capacity, I was living again. I could read.

My wonderful massage therapist had suggested The Brain that Changes Itself. I came across the reference to Prof Lorimer Moseley and his mirror therapy for phantom limb pain and that he was extending that research.

Clearly, even though I did try, mirror therapy wasn’t going to apply to me (I demonstrated by acting as though I was looking at my behind in the mirror) so I googled Lorimer’s details and gave myself the permission to email him because his email was posted everywhere.
I thought I could be research material, at the very least. This pain had to go somewhere.

Having read three paragraphs, Lorimer responded with ‘Tell me where you are and I’ll put you in the right hands’.

He also signed off with some strange signature, he was trying to get his phone to type what he was thinking. I was thrilled at this information thinking it’s this sort of left field approach I may need. This could be my ‘diagnosis’ man!

Exactly one month later, 4.5 years after my injury, I met Anne-Florence Plante (AFP) at The Women’s chronic pelvic pain dept. She spoke my language, she listened, she understood, she finished my sentences, she explained all my experiences of pain and most of all she diagnosed me with Pudendal Neuralgia (PN).

I was given a tangible source of my pain, it had a name!

I like the summary of PN as a Carpal Tunnel in the pelvis. The Pudendal Nerve controls our sexual and toileting functions and signals but it arises from spinal nerve roots S2-4. I feel like I’ve damaged my core. This is a pressure sensitive nerve, no, you can’t swim, water is pressure and is heavy, getting out of the pool brings on a flare, fluctuating barometric pressure affects it enormously, sitting is always difficult, sometimes impossible, I can’t lie on my back either, and avoid lifting anything over a kilo.

The pieces of the puzzle came together that day, now I had a focus, somewhere to send the brain off to focus upon and to play with. AFP also showed me an acupressure technique (lying on my back!) and switched my pain off. The roaring sound in my head, the vibration through my spine, all of it became silent like a roar of waves had settled, everything in my body was still, I felt space again, I felt cool, I remember seeing an image of a crisp, clean, white piece of paper.

My brain was given a way to rest.

This is where I met ‘pacing’ and as much as I hate that term, I know it’s my only way forward now. I had also met someone who would introduce me to advocacy. AFP gave me all her research when I told her I had an idea for a website, somewhere I could save others at least 4.5 years of their life searching for a diagnosis. I contacted all her referenced specialists, I built the website, pudendalnerve.com.au. It’s wonderful today to be able to thank those of you who are in the audience and have contributed to it.

In the time since my diagnosis, it won’t be surprising for you to hear that I’ve had effective treatment and made much progress. Nerve blocks, a little medication and now Traditional Chinese Medicine, along with everything I’ve learned, gets me through my day. I feel Western medicine, the implant in particular, chiselled away at the glacier of pain and I had smaller pieces to deal with. My current TCM has prevented me having to undergo more nerve blocks, so I believe. Western med can be invasive, I feel its practitioners can sometimes sweep chronic pain issues under the carpet in the hope they’ll disappear. TCM feels like it is aiding the body to do its own work. TCM cured the majority of my fatigue. That was another turning point. I remember the wonderful feeling of again being able to string thoughts and activity together.

My blocks of thinking /capacity aren’t huge now, but they are much longer than the seconds I previously had.

My limitations are still great but I can plan around them with Theo. Our home/office is a warehouse space that has been transformed with those limitations in mind. I am able to contribute to our business and with a full-time designer we are once again up and running. Theo and I recognise our life, it’s a portion of what it used to be but it’s our life.

Social media became my legs, my arms, my connection to the community and the world, it’s social media that has got me here today.
The hardest thing is learning to think and develop ideas in the short, scattered moments of time. I began with drawing pictures, I dictated to my phone while my computer typed. I could dictate from anywhere in our house. I expressed my pain in a creative language, I began to put it somewhere, I paced myself back to painting. One of our great Australian artists, Jeff Makin, was kind enough to come around to my studio and set me ‘homework’ at my pace. I avoided any transport, even being a passenger in a car, to give myself more “up time” in the form of a quick cafe visit, attending an exhibition opening just a block from where we stay. I accepted help from everyone, my community learned of my pain so I was able to shop and leave things behind for Theo to pick up!

I still do that… I cannot go to a bookshop and carry books home, even now.

A trip to Italy influenced me greatly and gave me an idea about how to express my invisible pain. I would commission Colleen Burke to make a marionette of me. Ms Soula who sits here next to me was born. She expresses my loss of independence, she expresses my loss of control in life, and all done while looking ok.

I’ve always loved documenting character, I now document her in pain, and not me. The portrait here was chosen as a semi finalist piece in our National Moran Portrait Prize this year, she’s already teaching people about the invisibility of pain and I’m so happy.

The collage on the easel was a most enjoyable piece to put together, I honestly felt I was piecing myself back together, I also had a place for my left over prescriptions, they are chopped up and in her face.

That. Felt. Very. Good.

And all these pieces, with pudendalnerve.com.au posts, came together and formed my book, Art & Chronic Pain – A Self Portrait. Laying out the string across a 10mt span of newsprint and using the string to show the status of my journey over this past 7 years was so pleasing. I felt I was touching the pain. The book is here, for sale.

You would all have gathered how adamant I am about changing my pain, putting it to an advocacy role, transforming it to a good thing. I want to help others. To do this, professionals and patients have to come together I believe.

To back that up, I’d like to encourage any of you to contact me, this is my email, or, google ‘pain, soula’ and you’ll find me. Not being your patient and you not being my practitioner opens up our dialogue and that is certainly a great thing for education.

I must point out my advocacy for injured workers, comes from the same core issue, that the WorkCover system is so primitive in its understanding and acknowledgment of pain. It chooses to ignore the disabling and impairing consequences of chronic pain. The system finds me to have a 0% permanent impairment. For someone who relies on her husband’s help from hour to hour, who can’t drive, can’t lift much over a kilo, needs the treatment I’ve had, that assessment can’t possibly be right. I am lucky not to have depression but if I had it the system would then have been able to rate my impairment. The system’s way of compensating me hinged upon a legally binding document provided by a panel that diagnosed me with a chronic pain disorder and ‘the severity and extent of her psychiatric condition’rendered me indefinitely unfit for duty. That of course meant any further medical treatment that was not psychologically or psychiatrically based was not considered appropriate and would not be partially reimbursed by the insurer.

The work of Franz Kafka comes to mind.

A crucial point I’d like to make is that GP’s need to have a great directory of health professionals to whom they can refer their patients.
Practitioners seem to be so short on time, it’s very difficult to quickly communicate what being in pain is all about. A patient doesn’t have the medical language needed to clarify what they’re feeling. I don’t understand why it took me 4.5 years to hear what I was describing was actually ‘sensory pain’ and ‘allodynia’. Only recently did a practitioner explain the ‘delayed pain response’ when I insisted that
I have a 24hr delayed response to some activities. I was made to feel that it was up to me,the patient, to coordinate my pain research, my treatment, to figure out which practitioner to see next. If I’d not made contact with Lorimer online, I wonder where I’d be today. Before my diagnosis all I kept hearing was ‘go home, it’s quality of life for you now’ and ‘this is chronic pain’, one group actually asked me to stop investigating my pain (by now you might all very well imagine what I said to them!).

Where is there a chronic pain centre? I have a vision, a pain centre that includes both Western and Traditional therapies, one that includes a creative space, and many other spaces including a recruiting agency. We need for chronic pain, what Olivia Newton-John has done for Cancer.

To finish off, I’d like to let you know that a great documentary film maker, Peter Lamont, is currently filming me for an art/chronic pain documentary. Through crowd funding I raised $5,000 for his production costs. He will exceed his spend no doubt but wants to contribute to this great cause. The short documentary will be offered as a free link in hope of raising awareness for chronic pain education.
And finally, thank you PainAustralia, thank you AIM Pain, above all, thank you to my wonderful husband Theo for getting us here today and getting us through tomorrow.

Feedback

19
  • Pat Jackson

    Once again I so admire you! Wish had your courage. I have chronic pain but after 14 years with my Doctor
    he sent me a letter stopping pain medication—I am now without a Doctor, no meds and afraid of what lies ahead if I can’t get help! I have intractable chronic pain and PN in my butt! Flare ups terrible! Plus have spinal cord injury, which caused PN. Keep helping and bless you!!!!

  • PJ

    You are amazing! Thank you for this blog, and all the support you’ve provided to countless people like me affected by this beast. I was wondering if I could contact you to brainstorm about a potential idea.

    Keep soldiering on,
    PJ xx

  • Paula Wilson

    Soula, you are both amazing and inspirational. I can not find the words to thank you enough for being my voice and the voice of thousands of other chronic pain sufferers in Australia and beyond. Thank you for having the courage (which I lack) to stand up there and educate and inspire. How you even began to prepare for this whilst dealing with pain, never mind actually delivering the presentation is beyond me. I’m afraid lack your creativity, but substitute your pudendal nerve for my CRPS and you could have been telling my story.
    Soula I hope you are able to continue to find the courage and strength to continue your advocacy for us all. I hope one day to meet you at that Pain Centre. What an amazing achievement that would be.
    To your good health!
    Paula

    • Soula Mantalvanos

      Dear Paula, your message is so touching. I’m glad I’m able to put my creativity, pain and the support I get from Theo toward helping others. I wasn’t sure if I could do it but having thought that I also knew I could not refuse this chance. Let’s hope someone is reading about the Pain Centre and will be in touch with me very soon for those tips! We’ll jump into the ‘art room’ and create together. Get all that angst out. That collage was really cathartic, I highly recommend everyone rips up their excess scripts and puts them somewhere creative.
      All the very best and thank you for your support and words.
      x Soula

  • Marina Kountouris Nikolopoulou

    Soula mou, I am so proud of you! Your determination to find the truth about your condition has turned something so tragic into an enlightening web site for thousands or millions of people who survive life in chronic pain. You are absolutely right that the doctors ( and nurses) don’t get enough training on the issue of pain. Or better said, as an RN myself, I see that there is a nursing culture that follows the stance ” oh, they are just hooked on their pain meds and seeking their dose” or worse ” they are just seeking attention”…Please Soula don’t stop speaking about your experience. You embody millions of people who don’t have a voice. Speak louder and hopefully YOU can bring a new era of LISTENING to our patients. It is because someone Listened to you and Believed in your vision that you have reached now the other side of living again. I need to buy a few copies of your book and pass them around or brim you over here with Theo and Ms. Soula! Love you, Marina Kountouris

    • Soula Mantalvanos

      Marina thank you so much for visiting the blog and for following Theo’s and my journey. It has been difficult but when I read comments like these from around the world it tells me that we have a job to do and we want to do it right. It’s difficult at times to believe in yourself when you don’t recognise yourself, but in time, and with great support, you do find yourself again. I’m happy to say I am there. I am Soula again and yes, I will help as many others as I can. Theo will be in touch about the book. I made it to be a companion to those who have experienced the same – something they can also show to their friends and family.
      I hope we get to meet one day. Love you too, xxxxxxx

  • Ailsa

    Succinct, clear, heartfelt and inspiring. How wonderful that you did it and how enriching for those practitioners. Congrats to you and to Theo. Remarkable. Big love. Xxxx

    • Soula Mantalvanos

      Thank you darling Aisla. You were in my thoughts as I walked on the stage. I forced myself to look at the faces… I was pleasantly surprised, it gave me the courage to continue… thank you for your advice and love. xx

  • Bam's Kitchen

    Great post Soula! I am so glad you were able to go and tell your pain story to clinicians and increase awareness. I hope your pain has settled now that you are back home. Take care

    • Soula Mantalvanos

      I used my implant on the way home in a way I’ve not done before. A great practitioner at the Alliance gave me some great advice and it was of great help. Hoping I can move around more as that’s been very limiting. This was a truly empowering and rewarding experience. Thank you for your neverending support Bam x

  • Judy

    Awesome. Thank you for doing this.. Can you please tell which Traditional Chinese medicine has helped you?

    • Soula Mantalvanos

      Darling Judy, I have had acupuncture done and was given various herbs in capsule form. I think this is something very specific to each person which is what I love about the TCM approach. I also wear this wonderful cooling patches (http://www.waylesshealthsupplies.com.au/shop/catalog/product_info.php?products_id=53) that have reduced the spasm in my lower back.
      Hope you’re doing great! x

      • Judy

        How did you use your implant in a new way? I also have a peripheral nerve stimulator.. I have had it for only 2 months. I have had some relief but a long way to go.

        • Soula Mantalvanos

          I had a great physician give me new insight to my stim. He said, ‘it’s like a tango, you keep refining’ and he’s right. You call your programmers and keep on changing the way you use it. Trial and error, when you feel it’s not working, ask for another program, try something new as we should be able to get a couple of pain free days at least! I think our bodies and mind can become used to it, learn the programs so we need to change it, stay on top of our very intelligent brain. xx

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Definitions of pain

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 aggravated 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.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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