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?
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!).
(Excerpt from Dr. Aaron Filler’s website www.nervemed.com/about/dr-aaron-g-filler-md-phd)
Dr. Aaron G. Filler, MD PhD FRCS
Dr. Aaron Filler is the world’s leading expert in treatment of nerve pain. He has revolutionized nerve-pain treatment by inventing several new technologies. One such technology, MR Neurography, enables doctors to use an MRI scanner to examine nerves, previously a difficult-to-impossible [...]
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 About
, Pudendal Neuralgia
, Who can help on September 20, 2012
I’ve been contacted by a few males who feel their symptoms are similar to the ones I share on my website. There is help, for males with pudendal neuralgia in Australia:
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
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!
ABC 1 Catalyst: The Trouble with Sex
Yay for some recognition and acknowledgment!!
Injury to this nerve can happen during childbirth or with lower back injury, or strenuous exercise. Australian based expert on the pudendal nerve is gynaecologist, Dr Thierry Vancaillie.
Dr Thierry Vancaillie
When they come to see us, they will talk about bowel dysfunction and bladder dysfunction. Maybe talk about pain within the course, but arousal problems, well, they’ll leave that for last, if they’ll talk about it.