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 [...]
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 About
, Pudendal Neuralgia on February 6, 2013
Finally some accurate coverage and attention. WorkSafe, I hope you were listening, ignore Chronic Pelvic Pain no more!
Honestly, I cried listening to this on Wednesday. Nothing like empathy and understanding after years of pain and hunting for diagnosis and proper treatment. So for anyone who’s (understandably) thought ‘is so-and-so really in pain? I just [...]
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.
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 About
, My pain
, Work & The System on October 23, 2012
…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!!!!
soula in About
, Pudendal Neuralgia on September 4, 2012
(Excerpt from the Daily Mail’s newspaper)
Feminist Naomi Wolf finds enjoyment in sex again after her nerve ‘wiring’ is repaired by surgeon
• Author felt something different was happening after sex
• ‘I felt I was losing somehow, what made me a woman’
• Doctor found she had been born with mild spina bifida
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.