soula in Professional
, Who can help on December 13, 2013
Living with pain can be a miserable existence, but the Australian Pain Management Association (APMA) gives hope that with the right treatment and life skills, your pain will improve and you can enjoy life again. APMA is a non-profit organisation which supports the one in five Australians who live with persistent (chronic) pain. Their Pain […]
soula in About
, Read on October 30, 2013
Yes, I’ve found another medium to express my pain and you can own your own copy of it!
I didn’t see the point of creating a long description of my living with pain, sharing my tips, turning journal entries into a pain story. I am, first and foremost, before the pain life, an artist… so my book had to contain many pictures and few words, just 32 pages in fact, but I believe it’s a complete story. It doesn’t hold the solution for PN but it’ll allow you to explain it to someone else, leave it on the coffee table, and it will be light enough to carry around. Above all I created it to express my experience so far and so that it is a bit of a companion to another PN family member. The idea was for the reader to feel empathy in a world where no one seems to understand, and to ease the pain as you look through it.
soula in Professional
, Who can help on October 28, 2013
This is a brilliant website! Have you ever been in so much pain you found it too hard to speak? Dumb question, of course you have, you’re on a PN website. Well the mypainfeelslike.com website includes a pain questionnaire where you can either select from relevant various answers people have entered about their pain or […]
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!).