soula in About
, My pain on April 23, 2013
Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood.
I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I’m hopeful again and thinking I was in some kind of a flare. I can’t expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I’ve got to expect at some point the body is going to say, ‘hang on love, you’re lifting too much milk!’
As you may have read I’m a little suspicious as an injured worker, about my WorkCover assessments over the last six years.
No one has ever documented or treated my condition appropriately, no one seems to know Pudendal Neuralgia, it seems like it’s not part of the guidelines that Independent Medical Examiners are required to assess [...]
soula in About
, Pudendal Neuralgia on February 25, 2013
Well it’s hardly a birthday celebration! But certainly a time to reflect and assess myself and the achievements of PudendalNerve.com.au. The total visits in 12 months total an astounding 21,500 and the search terms are a clear indication that still, so little is understood of Pudendal Neuralgia worldwide.
The first note must be of thanks and of course, has to go to my husband Theo. Without Theo’s daily help this site simply wouldn’t be up and running…. neither would I!
Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I’ve made in the past year. I’ve met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue (in the hope of resolving it not only for me but for all of us!), and/or try to voice my improvements for an ignorant WorkCover system.
As far as my personal 1st year status goes, I definitely have ‘progress’ to celebrate; I’m running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep, in much less pain but still much limited with capacity and in need of daily help. Although I still need regular massage, I’m able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon.
(image) Nerve Block Cake & Candle
To sum up, here are some stats that may be of interest to my subscribers and visitors (and my very loyal spies!).
HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.
HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment [...]
soula in Learn
, Professional Resources on February 2, 2013
A dear friend (cyber) introduced me to Dr Nick Christelis. One of these days we’re going to meet, but in the meantime I’ll go ahead and include a post about this wonderful man and his associates.
My aim for this website is obviously to create awareness for Pudendal Neuralgia and any issue that relates to it. So far it’s been difficult and a very slow progress as far as getting practitioners/specialists to connect, listen and introduce themselves and share their learnings. Of course that does have a lot to do with these wonderful professionals being caught up in their work, but also their limited time to get stuck into social media. And this is what I’m loving about Dr Nick Christelis’s group, they’re using social media to meet and mingle, learn and spread word.
It gives me so much hope, not only for Pudendal Neuralgia but for other Chronic Pain disorders. If practitioners are able to connect to each other, listen to their patients and then share what they’ve learned, awareness and appropriate treatments will approach us much faster. Bring it all on!
Definitions of Pain is a must read for anyone who’s ever felt their descriptions of pain are not understood.
soula in Learn
, Professional Resources on February 1, 2013
PainAdelaide is an interdisciplinary cross-institution collaborative initiative to develop a synergistic and highly-visible pain research community in Adelaide. What does this mean? Well, Adelaide’s three Universities – UniSA, Adelaide & Flinders – all have world class pain researchers doing world class work.
The objectives of PainAdelaide are to improve the quality and impact of pain research and clinical practice in South Australia, and by so-doing, across Australia and abroad. We will do this by:
* bringing high quality researchers together, to act as ‘cortical prostheses’ for each other, to exploit the unique contributions and intellectual diversity of Adelaide’s Universities, and to facilitate collaboration on interdisciplinary projects;
* developing a visible pain-focussed presence in Adelaide;
* directly engaging with, and developing ongoing constructive relationships with, Adelaide’s high quality pain clinicians;
* fostering a collaborative spirit of intellectual curiosity between researchers, clinicians, stake holders and consumers;
* confirming and extending Adelaide’s long-standing reputation as a Centre of Excellence in pain research and treatment.
PainAdelaide 2013 is our first meeting.
From London UK & Corfu, Greece
“I’m now retired from the University of Westminster & semi-retired from private practice. I live in Corfu, Greece most of the year and make periodic visits to the UK to see a few patients, do a little teaching, & catch up on what’s happening in London’s art and theater [...]
soula in Learn
, Professional Resources on August 24, 2012
The study and treatment of persistent pelvic pain is a growing area needing robust discussion and critical thinking. The pelvis isn’t weird and mysterious. It is merely complex, with multiple social implications and psychological/biological complications. A good portion of the fine research on CRPS and CLBP may be just the thing we need to help these patients.
soula in Learn
, Professional Resources on August 22, 2012
A brilliant lesson on nerves and how they work. I found this through the wonderful body in mind website. Read the forum going or head over to TedED to find more brilliant lessons.
Thank you to these forward thinking brilliant people. And to the creatives that put the presentations together.
By Educator, Elliot Krane and Animator, Franz Palomares
“At any moment, there is an electrical storm coursing through your body. Discover how chemical reactions create an electric current that drives our responses to everything from hot pans to a mother’s caress.”
The condition and existing barriers to management and practice
My understanding of a ‘syndrome’ is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can’t seem to penetrate its existence in Western Medicine’s Bible, and so it is unrecognised, misunderstood or ignored.
So when my physiotherapist at The Women’s Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover’s understanding (not) and treatment (not) for injured worker’s with the issue.
Thank you Alesha Sayner and The Women’s Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!