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!’
soula in About
, Pudendal Neuralgia on April 15, 2013
An incredibly effective form of communication for Internal Cystitis (IC) and Pelvic Chronic Pain.
Certainly captures everything I’ve felt and everything I hope; release those chains! And how true that they are depicted with such weight. Absolutely loved this. Donna Massa-Chappee congratulations. Thank you for expressing this so clearly, for your understanding and for taking [...]
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 [...]
Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this:
Removal of pelvic thickened ligament Peripheral stimulation device implant Diagnosis Nerve blocks Medication … Could it be my Traditional Chinese Medicine?
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 system
, Work & The System on August 28, 2012
I’m forever searching for a decent explanation as to why the AMA Guidelines used to assess injured workers in the WorkCover system are so poor and out of date, especially when it comes to assessing chronic pain (and in my case of pudendal neuralgia measures a total score of 0!!).
Along my social media travels, searching for answers and researching for treatment or updated information regarding my condition, I have met John and had the pleasure of some great discussions. Dr John Quintner is a consultant physician in rheumatology and pain medicine and has kindly offered to share his published opinion on the matter. Thanks John!
Personal injury compensation: lessons from Talmudic law, by John Quintner
…This article examines some of the principles upon which our personal injury compensation systems are based, in order to better understand why the process of tort litigation has itself become such a major factor in healthcare in modern societies…
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.”