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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. Continue Reading

ABC Radio National thank you thank you thank you

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Finally some accurate coverage and attention. WorkSafe, I hope you were listening, ignore Chronic Pelvic Pain no more!

Honestly, I cried listening to this on Wednesday. Nothing like empathy and understanding after years of pain and hunting for diagnosis and proper treatment. So for anyone who’s (understandably) thought ‘is so-and-so really in pain? I just don’t understand’, please listen to the following 38 minutes.

The world of pelvic pain specialists have jumped on this wonderful exposure, Wednesday was a day that will be marked in medical history. It’s given all sufferers a voice and most importantly an audience. I have a hunch it’s going to take WorkCover a while to acknowledge the issue but I’m going to do my best to change that. I know it’s a long shot but there are people with this pain at home, unable to get up and feed/dress themselves without support because WorkCover have chosen to eliminate ‘chronic pain’ from their assessment guidelines.

None of my treatments have been supported, my support for the rest of, what would have been my working life ended, my impairment found to be 0% (even with an implant scar). I’ve been investigated (poorly I might add) and now left with about 9 hrs of scattered up time a week, having invasive treatment, and completely reliant on Theo’s undivided attention and help, with 0$ support. Of course I’ll do it, but I paid a WorkCover premium and expected it to support me if I hurt myself at work.

Please feel free to share the email. Thank you ALL for your support (well except for WorkCover).

Listen now or Download audio

Broadcast: Wednesday 6 February 2013 9:05AM (view full episode)

Imagine not being able to sit down, go to work or look after your kids because of an overwhelming pain in your pelvis. One of our guests, Vanessa Watson, experienced excruciating pelvic pain for several years and it’s radically altered her life. Vanessa’s story is not uncommon but as the causes for pelvic pain are complex; some women don’t receive adequate medical treatment. So what is known about the causes and could medical treatment and services improve?

Guests

Bettina Arndt
Social Commentator
Dr Susan Evans
Gynaecologist and Pain Medicine Physician
Vanessa Watson

Credits
Executive Producer Julie Browning

Presenter Natasha Mitchell

Read more…www.abc.net.au

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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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