(View the story online http://www.abc.net.au/7.30/content/2016/s4547621.htm)
Tune in tonight for my interview in regard to navigating practitioners with a chronic illness. On the ABC’s 7:30 report (yes, on ABC at 7:30)
Patient’s have a voice and patient’s can help other patients by reviewing the professionals (and not!) whom they’ve seen. Best of all, patients can do this with their own patient, laymen language.
I wish I had read ‘This practitioner helped me with my sitting pain’ somewhere on the net. Perhaps it would not have taken me 4.5 years to be diagnosed.
Love the idea of whitecoat.com.au. Love the idea of patients sharing their experiences and encouraging great care.
Most of all, it puts the patient in the driver’s seat, eliminates the pressure for GP’s to know everything which is impossible. It’s a patient’s job to look after their health issue and with resources like whitecoat.com.au that can be done.
And no, I never get paid for interviews or to plug someone’s service – this is my opinion.
So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you’re in pain thinking ‘if this friend tells me I need to meet someone and sustain a new friendship, I’m going to punch him’ – but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago (like eight years ago for me).
And neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.
Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.
It’s true that each of our pain journeys are unique. I must have been asked the following questions at least a gazillion times during my own pain journey:
How did the chronic pain begin, what investigations have you had, did you bring any reports with you, what kind of pain treatments have you tried, how long have you had chronic pain, which Health Care Professionals (HCPs) have you seen, have you taken any pain medication…?
And, I will never forget struggling to answer. That is if I was able to answer due to my fatigue, extreme pain levels, or dulling effects due to pain medication.
So how can a HCP begin to gather the best possible understand of each of their patients unique pain journeys? And how do patients navigate their search for diagnosis and treatment as best they can?
Stand clear… Pain Train is approaching
I don’t think I need to write an introduction for Dr Echenberg or Bridge for Pelvic Pain. The only explanation I feel I need to give is that I was drawn (pardon the pun!) to Dr Echenberg’s fabulous ‘patient expressions‘ web page on his site: www.instituteforwomeninpain.com and had to send him an email.
I landed on The Echenberg Institute website after participating in the Pain Pathways facebook chat. From there I was also contacted by Carin Willis, the Founder and ED of Bridge for Pelvic Pain who also took the time to send me a very touching email expressing her appreciation for The Hurting Strings and requesting that we connect and stay in touch. Carin was also kind enough to send this review:
Soula’s video about her literal fall into chronic pelvic pain (pudendal neuralgia) is one of the most profound short-films about chronic pain and its affects on the patient and their families and care-givers I have seen to date. I highly encourage anyone dealing with chronic pelvic pain to watch Soula’s video “The Hurting Strings” and to share Soula’s message of patient advocacy, having a good support system, and to focus on the possibility of hope that shimmers through very dark days.
Considering Dr Echenberg is the Founding Board Member of Bridge for Pelvic Pain and a member of the International Pelvic Pain Society and has “seen people from over 25 states in the US and from at least 5-6 other countries”, I’d say many are aware of his work and dedication in the area of chronic pain. Instead of writing more of Dr Echenberg’s achievements, I’d rather paste part of his wonderful, empathetic reply that arrived in my inbox. It gives me immense hope and reassurance for anyone with chronic pelvic pain, and provided me with great appreciation for my advocacy efforts.
I know you will be inspired to read more about Dr Echenberg’s work and feel the hope that I did when I received both his and Carin’s email.
…upon opening my messages just now your site, your book, your story… so much more light here in Pennsylvania even though it is almost midnight.
One of my main missions is to spread awareness and hope about the science and art of dealing with chronic pain and push hard for earlier diagnosis and integrative and effective therapeutic approaches in order to “prevent” the spiraling down of tens of millions of women and men just here alone in the US – the supposed bastion of medical technology. The training of health care practitioners everywhere in lower genital tract pain is almost nil. Several of my “projects” and involvements you can find at www.bridgeforpelvicpain.org which is a new non-profit out of Colorado whose mission is to raise world-wide awareness as a grass-roots organization to engender hope and education at all levels – and another active project is at www.paindownthere.com where a few of us have produced a soon to be released 2 DVD set designed for young women to learn properly about their bodies and give up to date information about ‘connecting the dots”
Thanks again for finding our site and offering your inspiring work.
Dr. Bob Echenberg
Member: International Pelvic Pain Society
Co-Author: “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships”
Office phone: 610-868-0104
Carin E. Willis
Founder & Executive Director, Bridge for Pelvic Pain
Skype/Phone number: 719.445.7040
Facebook: Bridge for Pelvic Pain
(Excerpt from findingyoga.com.au
Rachael West is a yoga teacher, facilitator and educator.
She is an accredited yoga teacher with Yoga Australia with roots in the Krishnamacharya lineage and in 2011 completed a University Diploma in Yogic Education (University of Lille, France) with first class honours.
As the only Australian to study this specialist practice area, Rachael is able to work in a unique space in health care: allowing each person to understand what wellness means to them and to develop the practices that will get them there.
Rachael has also graduated from a Circus in Performance qualification with Greentop Circus in Sheffield, England. Prior to that, she obtained a Bachelor of Civil Engineering (Curtin University, Australia) with first class honours and worked as a civil engineer and facilitator in the public and third sectors.
She is credited with creating the first Gentle Yoga for Fibromyalgia program in WA, allowing sufferers of chronic illness and persistent pain to gently resume exercise, manage the stress of their condition and build confidence in their bodies. The program is allowing them to re-discover their relationship with their bodies.
Changing how we feel about our bodies when they hurt
The Yoga for Pain program is available in person or online and helps those with Fibromyalgia, Chronic Fatigue and persistent pain return to gentle exercise safely, manage the stress of their condition and feel confident about using their bodies.
With a special focus on body awareness and effortless movement, Yoga for Pain is helping people to reconnect with their bodies and change their relationship with pain. (more…)
(excerpt from www.pudendalassociation.org)
Who We Are
The Pudendal Neuralgia Association, Inc. was established in 2013 as a non-profit organization in the state of Massachussetts. We provide educational services to pudendal neuralgia patients and their families as well as medical personnel in English and in Spanish.
Our wish is to help improve the quality of life of pudendal neuralgia sufferers.
Members of The Executive Board
Dahri I. McFaline, M.Ed.Executive Director, President
MaryBeth Scalice, Ed.D. Coordinator of Psychospiritual Services
Andrea M. Kaubris – Clerk
Rosalyn Feliciano, M.A. IDET – Instructional Designer
Raena Avalon – Consultant
Maureen N. Strong, CPA – Treasurer
Board of Directors:
Kara Moylan MacLean, M.Ed.
Richard P. Marvel, MD
Jose R. McFaline-Figueroa, MD PhD
Jyotsna Nagda, MD
David Podolsky, JD
Clinton Michael Radenbaugh
- Establish and maintain a telephone hotline to provide support for pudendal neuralgia sufferers seeking emotional guidance.
- Identify appropriate resources to assist affected patients and their families in coping with their chronic pain, daily activities, emotional stress and financial burdens
- Locate medical resources available in the vicinity of the affected patients’ community and facilitate their access.
- Provide counseling services.
- Educate patients in new ways to regain their individual and financial independence so that they may once again feel they are contributing members of society.
- Facilitate training programs for medical personnel in the latest pain management treatments and surgical procedures for pudendal neuralgia and pudendal entrapment patients.
- Establish a capital campaign to create aHope Centerto accommodate patients and their families who travel long distances for medical treatment.
- Maintain online information about the latest treatments and medical procedures.
I met Rosemary McKenzie-Ferguson advocating an online forum for injured workers. She spoke in a way I’d never heard before, she spoke to me about support, empathy and trust, the ways an injured worker never experiences (I’m vouching for the Victoria’s system). I’ve since had the pleasure of meeting Rosemary and we’ve become great friends….
(Excerpt from the beyondbasicspt.wordpress.com blog)
Amy Stein is the founder and a practitioner of Beyond Basics Physical Therapy in NYC, specializing in pelvic floor dysfunction, pelvic pain, women’s health, and manual therapy for men, women, and children while taking a holistic approach to each patient’s entire well-being. She is the author of Heal Pelvic Pain, an easy-read, self-help book. Amy is also a contributor to the medical textbook, Female Sexual Pain Disorders: Evaluation and Management, and serves on the board of the International Pelvic Pain Society, since 2007. She is a well recognized expert in her field, lectures nationwide, and has been interviewed in media outlets ranging from the medical segments of popular TV news shows, like ABC’s 20/20 to such newspapers as the New York Daily News to internet sites like http://www.ourgyn.com. She is also an editor of painchannel.com and a member of the NVA, ICA, as well as many other organizations. Amy received her Masters in Physical Therapy from Nova Southeastern University and is currently working towards her Doctorate in Physical Therapy.
Beyond Basics Physical Therapy, located conveniently in Midtown Manhattan on 46th street between 6th and 7th Avenue, has been committed to providing integrated and individualized rehabilitation since 2003. Our highly specialized staff provides comprehensive care to patients with a variety of pelvic pain and orthopedic conditions. (more…)
This is truly a thrilling post for me to finally be writing. I used to practise yoga 4 mornings a week for at least 45 minutes pre injury. After my warm up poses, my spine unravelling was eight minutes in shoulder stand, followed by another eight minutes in plough pose before Savasana (rest). So you can imagine how many times I’ve tried to get back to my yoga since knowing the benefits. i was always unsuccessful until I came across Dustienne’s Your Pace Yoga dvd. I still can’t work out what’s different, of course I’ve made progress but that can’t be the answer as it wasn’t so long ago I attempted cat/cow pose only to begin flaring. I’d say Dustienne’s sequence and breathing is definitely focused on opening, lengthening and creating space in the pelvis, it just feels great and I’m happy to report I’ve managed it once a week for over a month now. I know that’s not huge, but I’m blowing my trumpets that I could sustain one of the routines. I hope to get to both but my struggle lying on my back may prevent me.
Regardless, I don’t plug a lot on my website but I thought this was worth it as everyone can try it at their own pace and there’s just something about Dustienne that is authentic and really calming, not to mention she knows her pelvis! Here’s some more info: (more…)