soula in Blog
, Professional Resources on October 2, 2013
Here is my attempt to gather all references I’ve come across or refer to on my website for Chronic Pelvic Pain. Clearly nowhere near all the references that exist but at least one ‘library’ location with a bundle of great material (and one organised website!). If you’ve come across a resource that you think should be included, please contact me and if you are an author and have an update or other information to provide, I’d love to hear from you.
I know how frustrating it is to have to sift through pages and pages of the internet, thought this might be of help to pain sufferers who simply don’t have the up time.
And a huge thanks to everyone who replied and supplied me updated material. Obviously I plan for this page to grow and somehow I will keep it in some kind of legible order. Currently in alpha order by author and title of their publications, perhaps as it grows, we can list by subject.
soula in Learn
, Professional Resources on October 1, 2013
Viewable until 14 October, 2013.
A wonderful documentary available at SBS On Demand.
We experience pain from the moment we are born until our dying breath. We spend our lives trying to escape it, yet it is essential for our very survival. This documentary explores how genetics, the latest scanning techniques, virtual reality and hypnosis [...]
soula in Learn
, Professional Resources on September 3, 2013
I’ve made some great friends in cyber space throughout this PN pain journey (and developed quite a library along the way!). One friend I consider a favorite is John Quintner. He’s one of my most reliable sources when I need an honest opinion. We bump into each other over two main mutual ‘interests’: the (primitive) WorkCover assessment methods, and pain definitions. John doesn’t just know what he’s talking about, he’s upfront, honest and calls it how he sees it. And when someone has these credentials, I’m all ears, not to mention I become much wiser!
soula in Professional
, Who can help on July 30, 2013
Jane Muirhead, is an Occupational Therapist and Principal of Easpain. As a migraine and headache sufferer for many years herself, Jane understands what it is like to live with a long-term pain condition. She is committed to sharing the benefits she has received from positive lifestyle changes, including mindfulness meditation and gentle yoga with people who suffer from persistent pain conditions.
Before I get into PN versus PNE, I want to first give you a brief explanation of the physiology of the pudendal nerve and the diagnosis of PN.
The pudendal nerve is a large nerve that arises from the S2, S3, and S4 nerve roots in the sacrum, and divides into three branches—the inferior rectal nerve, the perineal branch, and the dorsal clitoral/penile branch. The nerve travels a tortuous course through the pelvis to innervate:
• the majority of the pelvic floor muscles,
• the perineum,
• the perianal area,
• the distal third of the urethra
• part of the anal canal
• the skin of the vulva, the clitoris, portions of the labia in women,
• and the penis and scrotum in men.
The pudendal nerve travels a torturous course through the pelvis.
Patients with PN can have tingling, stabbing, and/or shooting pain anywhere in the territory of the nerve. Symptoms include vulvar or penile pain, perineal pain, anal pain, clitoral pain, and pain at the ischial tuberosities as well as pain with bowel movements, urination, and orgasm.
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!’
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 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 [...]