The kindness of the pain world just keeps on delivering… The time and effort specialists take to email and share their resources and offer advice for pelvic pain / Pundendal Neuralgia (PN) is astounding and something that moves me so much. Having the website setup to be able to pass the information on is the ultimate. The chronic pain world is hellish, but like many of life’s screaming contrasts, for all the hellish qualities of pain comes a community that offers warmth, understanding, support, sacrifice, and the utmost kindness.
I can go on but my point is, I’ve found another brilliant pain centre and I want to share it. Quickly. Are you in the Netherlands? I believe you’re a phone call away from changing your pain situation (and participating in a ping pong game after your appointment!).
soula in About
, My treatment 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 [...]
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!).
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.
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.
(Image left: from Leon’s FB page showing his support for my website)
From Leon Chaitow’s website
Welcome to my revamped website (fully redesigned and built by my daughter Sasha).
Whether this is your first, or a return, visit – please take your time to explore the various sections and to click on individual book [...]
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.