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(Cut to the chase, I want to support the Pain Revolution 2018. Image: Lorimer and Soula at the Pelvic Pain Foundation of Australia Melbourne launch) I’ve got a soft spot for Professor Lorimer Moseley. In Feb 2011 I had just [...]
You’ve all heard the impact Prof Lorimer Moseley made on my pain journey – well my diagnosis actually. If it weren’t for him I wonder how much longer I would have been left searching for the reason behind (pardon the [...]
It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis! I’ve [...]
I never shop from my phone, but given Theo and I were away for the weekend (researching our next phase of life), I felt it was worth the risk responding to The School of Life’s Dr Norman Doidge event and [...]
I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA)'s Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014. I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I've 'e-met' many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN. Needless to say, last night I went on a magic carpet ride!
APS: How important are support groups for both you and your close family/community? Soula: I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.
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.
Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013 Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website [...]
...please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT'S true, IT'S official: I'M BACK AT WORK!!!!!!!" No, I've not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!
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.
