Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of it’ until about a year ago my onion was just too big! But I also [...]
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 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
, Personal resources on January 17, 2013
Another wonderful connection I’ve made on my daily mission for understanding Pelvic Pain, is with the lovely Kathleen Mazzella, founder of GAIN (in Perth).
Gynaecology is currently not too connected to Pudendal Neuralgia (and vice versa), but after my own experience, I believe in time they will be very closely connected. After all, there are many cases of nerve issues arising after gyneocolgical procedures, but I can also report that my first issue was in fact a nasty over grown pelvic ligament that my Gynaecolgoist removed (and with it went the extremely high sensory pain possibly releasing the pressure on the Pudendal Nerve).
Obviously progress and learning about the brain, pain signals and general medical research, will change the way we tackle pelvic pain today, thankfully!
(excerpt from the GAIN website)
Kathleen (Kath) Mazzella, Founder of GAIN (Gynaecological Awareness Information Network Inc)
Kath has endured the trauma of being diagnosed with, and treated extensively, for a gynaecologicakathl cancer – vulval cancer.
From a position of experience, and compassion, Kath created GAIN in response to the needs of these women. Today, a vibrant cancer survivor, she continues to lobby for more awareness, funding and research for gynaecological cancers, pre-cancers and other gynaecological disorders.
soula in Learn
, Personal resources on January 15, 2013
Pain in the pelvis can include pain ‘down there’ too… sometimes ‘back there’ as well! True! Just follow the path of the Pudendal Nerve and see where its extremities are…
I have cyber met many women who suffer with this awful condition called, Vulvodynia. The Pudendal Nerve branches extend to the Vulva, and so the condition is certainly ‘related’ to the whole Pelvic Chronic Pain issue. I personally relate to the condition after having extremely high sensory signals (almost maddening like I had my own ‘hoo-ha’ stuck in a power point!!), up until an oversized pelvic ligament was found and resected. Thankfully that high sensory pain (and associated issues) ended for me there. Of course my Pudendal Nerve and I are still in a personal battle over its insistant pain tune.
But… I’ll leave my personal details there and concentrate on some much needed awareness for my pain sisters who are out there telling their story and providing a voice to those who can’t bare to speak about this awful issue, Vulvodynia.
Firstly, a wonderful and supportive cyber friend, Vanessa Watson who lives in Perth and helps run the Pelvic Pain Support group with Catherine Aurubind for HOPE (Health Organization for Pudendal Education). Vanessa’s story was also recently published in The Sydney Morning Herald. You can also find us chatting on Facebook.
Secondly, Esther runs her ‘Mad Peach, living with chronic pain in the hoo-ha’ blog, and might I add with a great sense of humour. Read her account and many other accounts from her followers at: madpeach.blogspot.com.au.
And thirdly I’ll add a recent story, Privacy around private parts hurts women’s health, which went to air on the ABC’S 7:30 report last week.
It is certainly difficult to speak of this very personal pain but the more documentation and the more we share our stories, the more courage we give to our sisters to speak up. Speaking up means we share our treatments and knowledge and bring pain relief and quality of life. Silence will take us nowhere. Please share this post and related links.
soula in About
, My pain
, Personal resources on December 23, 2012
I’m not yet clear about the effects of Nerve block No. 3, but I’m calling it… I’m going to be positive… I believe I’m building! It’s just a sorta three steps forward and two back situation.. I hope.
So far, my building blocks go like this:
• Nerve block No. 1 (December 7, 2011),
• Nerve block No. 2 (April 18, 2012),
• Nerve block No. 3 (November 23, 2012)
soula in About
, My pain
, Personal resources
, Tips on November 28, 2012
With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up).
Of course, I’m no pro when it comes to seating, but I’ve learned a lot from my own experience and from listening to the ‘ouch’ in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it’s the stool with adjustable foot rest!)
Although I’ve worn out, thrown out, tried and tested so many more seating aids, I’m showing the ones that have lasted or worked for a while. These are the ones I often resort to.