soula in Learn
, Personal resources on January 20, 2014
My name is Robert. I’m a 20 y.o. athlete. I’ve been suffering from Pelvic Pain for 6 months. I hope my blog can bring awareness and support to this poorly understood subject.
soula in Learn
, Personal resources on July 30, 2013
Excerpt from American News Report: July 8th, 2013 by Carol Levy, Columnist
I was sitting at a table with some people I knew, slightly.
I did not know how much of my situation they knew, but the issue came up about my not being able to work. I told them about the pain that comes [...]
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?
soula in Learn
, Personal resources 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
, 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 treatment
, 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)