soula in Living
, My pain on March 6, 2014
The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).
What does PN mean to you?
To me PN is a yet to be accepted [...]
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
, My pain
, My treatment
, Pudendal Neuralgia
, The Hurting Strings on November 6, 2013
Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.
One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a [...]
the PELVIC PAIN report “Pelvic pain, while common, is often a hidden burden to the lives of many women. With emerging national and international knowledge about pain and the heavy toll it poses on individuals and society, it is timely that this report ‘The $6 Billion Woman and the $600 Million Girl’ raises pelvic pain [...]
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.
soula in Media
, Work & The System on May 31, 2013
You can all imagine why The Scheme Project caught my attention and you can all understand why my pledge was not only made in seconds it was supported (and increased) by my husband Theo who equally saw the benefits in Kris’s project. As frustrating as it is being left without any income and medical support after my workplace accident and having my fair share of rants to expose, I actually appreciated Kris’s professional approach to his project and his intent to make the documentary up front but not personal. He’s not looking for tantrums, witch hunts, singling out of fraudsters and unethical behaviour but rather aiming at exposing the realities in hope of making a change. At the end of our conversation we both agreed that life’s great knowledge of ‘health first’ doesn’t seem to be part of WorkCover’s culture. The support just isn’t there, not in treatment, not in standards, not financially and certainly not in return to work.
What does Kris need?
Your signatures and your pledge (pledges are not collected unless Kris reaches his target). ‘You’ may be an injured worker, family member of an injured worker or employer, a treating practitioner, medical examiner, conciliator, lawyer, investigator, WorkSafe agent staff member, Minister, anyone associated with the WorkCover system in fact any worker or employer, we all deserve better quality protection.
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 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 Work & The System on December 28, 2012
Increasing employment opportunities for people with disability.
Minister Shorten seeks proposals on ways to boost employment participation for people with disability, discussion paper seeking public views on how best to achieve reform.
The discussion paper, Improving Employment Participation of People with Disability, seeks public views on how to best achieve reform, including:
• how to promote and improve equality for people with disability in employment and in the workplace
• how to support employers to identify and remove barriers to full and equal participation of people with disability
• how to promote the removal of all forms of discrimination on the basis of a persons’ disability
• how to improve workplace consultation between employers and employees on issues concerning people with disability in the workplace
• how to improve the productivity and competitiveness of Australian business through the advancement of people with disability in the workplace.
The Government would like to hear from all interested parties, including:
• people with disability, their families, carers and community representatives
• employers and employer representatives
• current Employment Service Providers
• state and local governments
• unions and other employee representative groups