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A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain


There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.

I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.

This DVD isn’t just about managing pain, but rather a clear and concise  resource for females… It should be put on some International educational agenda. (more…)

Cake, Jennifer Aniston


(Official site www.cakemovie.net)


Claire Bennett (Jennifer Aniston) is in pain. Her physical pain is evident in the scars that line her body and the way she carries herself, wincing with each tentative step. She’s no good at hiding her emotional pain either. Blunt to the point of searing insult, Claire’s anger seethes out of her with nearly every interaction. She has driven away her husband, her friends — even her chronic-pain support group has kicked her out. (more…)



Thank you PainAustralia and Chronic Pain Australia

You are invited to attend a special preview of a new feature film ‘Ambrosia’ by director Rhiannon Bannenberg presented during National Pain Week at Fox Studios on Thursday 23rd of July.

The film which deals with the psychological impact of chronic pain on a young woman’s life has been selected by hosts Painaustralia and Chronic Pain Australia to be a key event in the annual week-long festival.

National Pain Week 20 – 26 July aims to remove the stigma and silence around the invisible burden carried by those who suffer chronic pain and their carers. This screening of Ambrosia which adds to an Australia-wide line-up of activities will appeal to a very broad audience.

Tickets can only be purchased online before the event. Tickets will not be available on the night. (more…)

Arthritis & Osteoporosis WA, Making Sense of Pain June 26 – 27, 2015


Calling all Health Professionals
Our fourth inter-disciplinary workshop

Register now.
Early bird registrations close on 12th June!

Presenters & RegistrantsWe offer health professionals a unique opportunity to update their knowledge and skills and to effectively transfer them into their clinical practice setting.

Our experienced team, which comprises “pain champions” together with experienced clinicians and researchers, present a unique learning experience conducted in a user-friendly environment.

Date: Friday 26th – Saturday 27th June, 2015.

Presenters: Ms Melanie Galbraith (Physiotherapist), Assoc-Professor Vance Locke (Academic Psychologist), Ms Jane Muirhead (Occupational Therapist), Dr John Quintner (Physician in Rheumatology and Pain Medicine), Ms Mary Roberts (Clinical Psychologist).

Pain champions: to be announced

Venue: Wyllie Arthritis Centre, 17 Lemnos St. SHENTON PARK WA

[N.B. This workshop is fully catered and FREE on-site parking is available.]

For details and to Register or contact:
Melanie Galbraith, MelanieG@arthritiswa.org.au or
John Quintner, jqu33431@bigpond.net.au

View information about previous workshops

Dr Doidge, Are Some Brains More Plastic than Others?


I never shop from my phone, but given Theo and I were away for the weekend (researching our next phase of life), I felt it was worth the risk responding to The School of Life‘s Dr Norman Doidge event and booked our two tickets.

Glad I did. The event was sold out within the week and over 300 people were on the cancellation list.

In 2011, after my peripheral stimulation device was implanted (and having my reading ability restored), I reached for  Dr Doidge‘s, The Brain That Changes Itself, and grasped the idea to contact Prof Lorimer Moseley who was referenced within the book.

That idea led to my diagnosis.

So my mind ran. What might happen if I actually met Dr Doidge?! (more…)

An Integrated Approach to Pelvic Pain


Interview with Robert J. Echenberg, medical advisory board ICA.

ICAUpdate-(2015-Spring)Echenberg-1Dr. Robert J. Echenberg is the founder of the Echenberg Institute for Pelvic and Sexual Pain in Bethlehem, Pennsylvania. Previously known as the Institute for Women in Pain, Dr. Echenberg’s practice is one of the first privately owned multi-disciplinary practices exclusively specializing in assessment, diagnosis, and treatment of chronic pelvic pain (CPP). Since its inception in 2006, the Institute has treated more than 1,200 women and a growing number of men with pelvic and sexual pain disorders from 25 states and five countries.

A member of ICA’s Medical Advisory Board, Dr. Echenberg is the author of the book Secret Suffering: How Women’s Pelvic and Sexual Pain Affects Their Relationships. Dr. Echenberg spoke with ICA Update about IC and overlapping conditions, why education must come before medication, and ways in which the medical system must change to address the needs of patients with overlapping chronic inflammatory and pain conditions.

An Integrated Approach to Pelvic Pain was published in the current edition of the ICA Update.

The Interstitial Cystitis Association (ICA) is the only nonprofit association dedicated solely to improving the quality of healthcare and lives of people living with interstitial cystitis (IC).

Interview—Mark Toner
Mark Toner is editor of ICA Update

Talk about how IC fits into the variety of overlapping conditions you treat.

I started this program in 2001 when asked to develop a nonsurgical approach to female pelvic pain through our  department of obstetrics and gynecology. We knew that all over the country young women were receiving multiple invasive diagnostic and therapeutic procedures for persistent and otherwise unexplained painful symptoms in the pelvic region (between the belly button and mid thigh). I found early on that IC was a cornerstone, if not one of the most common triggers of pelvic pain.

There’s a huge spectrum of pelvic pain patients, both male and female. Many conditions within the pelvic organs such as IC, endometriosis, and IBS are common organ or visceral generators of pain within the pelvis, but what I soon realized is that we were generally not even thinking of all the muscles, ligaments, and nerves that almost always contribute to the pain itself.

Much of the literature and my own experience since 2001 points to bladder pain syndromes being at least part of the picture of chronic pelvic, genital, and sexual pain about 80 to 85 percent of the time. That’s a huge number, and chronic pelvic pain translates into tens of millions of individuals in the U.S. alone. Not only are multiple parts of the anatomic pelvis involved in persistent painful pelvic symptoms, but there are also many overlapping inflammatory issues and other pain syndromes commonly associated with CPP. These include migraine, fibromyalgia, TMJ, multiple chemical sensitivity syndrome, all the autoimmune disorders, and others. IC patients are among large numbers of people suffering not only pain, but also fatigue, sleep disorders, hypersensitivities, allergies, and other slowly disabling illnesses that plague our health care system. (more…)

This Train is Bound for… Wholeville: A Travel Guide for the Perplexed


Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville


The School of Life special event: Norman Doidge On Neuroplasticity


I have a soft spot for Norman Doidge!

I associate his book, The Brain That Changes Itself, with my second biggest turning point (I’ve had a few if you want to read about them: turning point 1, 2, 3…)

You can hear Norman Doidge speak about his latest book, The Brain’s Way of Healing thanks to the fabulous School of Life. Here are all the details:

We know that our minds and bodies are intricately connected, but can changing our minds improve our health?


SBS Insight: Ouch!


Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

PNA Pudendal Neuralgia Patient Conference 2015


Register at: pudendalassociation.org

For Patients with Chronic Pelvic Pain
SEPTEMBER 25, 2015
Sheraton Annapolis, ANNAPOLIS, MARYLAND

TopicsPudendal Neuralgia Conference 2015 flyer

  • Overview of Pudendal Neuralgia: Concomitant Conditions: IC, Vulvodynia, Vestibulitis, Endometriosis, Irritable Bowel Syndrome, and Non-surgical Treatments
  • Anatomy of the Pudendal Nerve / Magnetic Resonance Neurography
  • Physiology of Pain / Image Guided Nerve Blocks/ Radiofrequency Ablation, and Cryoablation
  • Integrative Medical Therapies for Pudendal Neuralgia
  • Physical Therapy: A Non-Invasive Treatment Option for Pudendal Neuralgia
  • Surgical Treatments: Transgluteal Pudendal Neurolysis
  • Neuromodulation for Pain, Bowel and Bladder Incontinence
  • Cognitive Behavioral Therapy, Mind/Body Techniques and Biofeedback
  • Psychotherapy: Body, Mind and Spirit


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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

Thank you {Pain}Train for giving me a voice at all my appointments

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Pain Train was created by me – a patient, for patients!