Hello! Welcome to my website, pudendalnerve.com.au
I hope you’re not in ongoing pain but if you are, this website was created to provide resources to people who are experiencing chronic pain and/or trying to manage it.
My Advocacy & Helpful Resources
My Story
My name is Soula, and I literally fell into the land of pelvic chronic pain – specifically Pudendal Neuralgia (PN), on March 1, 2007 when a fitball I was sitting on burst and I fell to a concrete floor. At the time, I was working at ooi, my art & design studio that I run with my husband Theo.
Since 2007, I’ve learned alot about chronic pain – especially that you can manage it. I want people to learn from my experience because I believe my ongoing chronic pain could have been avoided. I was undiagnosed for 4.5 years and that was THE biggest trigger to my chronic pain experience.
You’ll need to learn alot about yourself and make some serious changes to your life (hopefully temporary and minimal) in order to be the best possible version of the new you.
I am an artist and now I also consider myself an advocate for people with chronic pain and Australian injured workers.
It’s been an overwhelming emotional journey since 2007. As well as the endless hunt for treatment that might lead to recovery, I have:
Your health story sorted
Your health story sorted
Blogs
Hello Happy Ears, Hello Better Night’s Sleep
Who would have thought it? But these wobbly, jelly-like babies (officially known as Happy Ears) are helping me get a great night's sleep. At first, I thought the sound caused by putting these in the ear might set my sensitive sensorial bells off. Also, my pillow and the sheets make noise moving over the earplugs (as strange [...]
Keeping up my Stamina
I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...
Report from ISO
Well, hello, COVID. After all the care, caution and staying in, Omicron finally caught us from no idea where. After all the fear of catching this virus, considering my Inflammasome gene and my chronic health issue, I'm happy to report that I breezed through it! I was abundant with the usual energy that comes to me when social obligation falls away. In addition, the pain levels fell away as they have done with previous colds – can the brain not manage two signals or is a virus some distraction? I went with it. I got stuck into my studio!
Soula Mantalvanos, Published Author of the Journal of Medical Internet Research
I'm an author of What Injured Workers With Complex Claims Look For in Online Communities: Netnographic Analysis, now published in one of the world's best medical journals.
