In what's becoming a life trek in the aim of defining my ongoing pain issue, there's a pattern I'm beginning to see. Most often when I read educational material and it feels like it's beginning to gell with my experience, I feel a suction begins to the words. I'm drawn into the paragraphs of the researcher/s and excitement kicks in. 'I'm going to find the definition, this person is speaking my language!' It gets wilder and wilder – think Willy Wonka's crazy boat ride (below, but hold on to your pelvis!) and the findings and resources amount to great support material. I begin to believe – 'this is IT!' But Like Willy Wonka's crazy boat ride, somewhere along the way it gets freaky, the definition starts to go off my track and as I keep reading I'm feeling that I'm coming unstuck.
When I started this website, my hope was to connect people living with pain with healthcare practitioners. At the time (2011), there was no online information or help for Pudendal Neuralgia and other such pelvic pain. I thought if I could provide the information in one place, it would help everyone connect and solve dreaded pain issues or at least speed up the diagnosis and treatment process. I didn't hope it would take nine years. Nine years...!!! But we have arrived and the point is that anyone can access this information session.
Life's pace is vastly slower if you are living with chronic pain. Anticipated outcomes from things like new treatments, explanations about causes of pain, pain research, realisations about personal ideas relating to my own experience all take months, years and even over a decade to arrive. Yesterday was the day I finally received some closure about the wicked Lyrica. There's been a build-up of medication reporting this past year but none of it hit the spot like The Project's report. I love the reporting on this show – it's one of the few programs that brings me to the TV. While watching last night, I got that bullseye feeling: I'm not crazy! How often does a person living with pain come to this blissful realisation? Not often enough I can tell you.
Join Dr. Echenberg (Dr E) and the Pain ‘Down There’ team as we talk with Lior Ofir about her experience with Restless Genital Syndrome (better known as Persistent Genital Arousal Disorder or PGAD). Lior will share her story and Dr. E will give us medical insights into this syndrome that afflicts an unknown number of women. We’ll talk about: – why this syndrome needs a new name – why there’s such hopelessness and desperation surrounding it (and why that doesn’t have to be the case) – the top 3 things on Lior’s list to manage her symptoms – vestibulectomies – how to talk to your spouse or sexual partner
“When we live with pain for a long time, it changes who we are. It changes how we see the world and how we relate to the world. It changes everything. It [...]
September 24 @ 8:30 am - September 25 @ 5:00 pm $220 – $330 This 2 day workshop for GPs and Health Professionals aims to provide participants with an inter-professional learning opportunity to better [...]