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Robert J. Echenberg, MD

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Dr Echenberg http://www.instituteforwomeninpain.comI 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.

Sincerely,

Dr. Bob Echenberg
Member:  International Pelvic Pain Society
Co-Author: “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships
www.instituteforwomeninpain.org

Dr Echenberg http://www.instituteforwomeninpain.comOffice phone:  610-868-0104
paindownthere.com/
www.facebook.com/Paindownthere
twitter.com/painfulsex
instagram.com/paindownthere

Bridge for Pelvic PainCarin E. Willis
Founder & Executive Director, Bridge for Pelvic Pain
Skype/Phone number: 719.445.7040
www.bridgeforpelvicpain.org
Facebook: Bridge for Pelvic Pain
Twitter: pelvicpainB4PP

National campaign: nerve pain is different

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New research reveals nerve pain affects the productivity and wellbeing of Australians


New research¹ shows six out of ten (59%) Australians who report living with neuropathic (nerve) pain are missing work at least once a week due to their nerve pain. Intriguingly, this is higher than those living with other chronic pain conditions such as osteoarthritis and rheumatoid arthritis (where 43% miss work at least once a week).

Pain Medicine Specialist Dr Nathan Taylor, of Sydney’s North Shore Private Hospital, explains how nerve pain is different to other forms of pain:

“Nerve pain affects many Australians. It is often described as being more severe than other pain and lasts longer than would be expected. Nerve pain feels different and is sometimes described as burning, stabbing, pins and needles, or the feeling of electric shocks. It can be associated with numbness or increased skin sensitivity.”

Celebrity chef Ben O’Donoghue shares his story of living with nerve pain as he becomes the ambassador of a new health awareness campaign called Share Your Pain, which launches today to coincide with the beginning of the Global Year Against Neuropathic Pain².

“Share Your Pain aims to increase understanding that nerve pain feels different,” Ben said. (more…)

ANZCA Bulletin: Simple Accident Leads to Life of Pain

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It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans.

“It is still a primitive time in pain. Being told for four and a half years ‘this is chronic pain … go home and live with it, there’s nothing that can be done’ is brutal not to mention primitive.”

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15th World Congress on Pain, Buenos Aires

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(Excerpt from www.iasp-pain.org)

The World Congress on Pain is the premier congress devoted to the research and treatment of pain.

Every two years the Congress boasts a hearty program composed of refresher courses, plenary lectures, topical workshops and symposia, and poster presentations. The Scientific Program Committee determines the content and an esteemed faculty of experts from around the world conducts the sessions. A Local Arrangements Committee works with the Congress Secretariat and IASP to present receptions, dinners, and other social events in keeping with the host city’s culture.
Purpose and Objectives of the Congress

The World Congress on Pain is designed to:IASP logo

  • Provide a state-of-the-art overview of a wide range of topics in the area of pain
  • Offer practical reviews of current research and therapies
  • Provide continuing education credits for clinicians
  • Allow delegates to participate in formal and informal discussions with international experts on pain management and pain research

(more…)

Yoga for Pain via Skype

Author:
Rachael West(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…)

Arthritis & Osteoporosis WA, Making Sense of Pain 14 – 15 Nov 2014

Author:
Arthritis Osteoporosis WA logo(Report prepared by Melanie Galbraith and John Quintner, Course Co-Convenors. Read more on the Arthritis & Osteoporosis WA website: www.arthritiswa.org.au )

The third inter-disciplinary workshop for health professionals

The late Robert Elvey, world-renowned Perth Manual Therapist, to whom these workshops are respectfully dedicated, would have been delighted at the enthusiasm and expertise with which our course content was delivered. Most of the attendees were physiotherapists, but there were also a few occupational therapists, podiatrists, and nurses.

Presenters & Registrants As well being truly inter-disciplinary, the other outstanding feature was the participation of our seven Pain Champions, who engaged with the attending health professionals in an honest, open and non-confronting manner.

By the end of the second day, everyone, clinicians and patients, had been given the opportunity to experience what it is like to be together in the “third space” – a clinical space for healing where “you” and “me” can become “we”.

Day 1 was about how to create the therapeutic milieu, whereas on Day 2 participants were encouraged to acquire the necessary practical skills and explore how best to apply them to real life practice.

The presenting team, led by physiotherapist Melanie Galbraith and retired rheumatologist John Quintner, included Jane Muirhead, occupational therapist, Vance Locke, psychologist, and Mary Roberts, clinical psychologist (registrar).

Together they shared a wealth of knowledge and experience with participants, and gave them valuable insights into contemporary best-practice pain management and the various language traps to be recognized and avoided in order that they do not inadvertently stigmatise their patients.

Melanie contributed “hot off the press” news from the recent World Pain Conference in Buenos Aires. The most exciting advance was the isolation of the gene FKBP5, whose genetic variants can influence not only the severity of persistent post-traumatic musculoskeletal pain experienced during the weeks following a motor vehicle collision and after early life trauma. The field of epigenetics holds great promise in helping us to better understand many painful conditions and how to manage them.

Our Pain ChampionsThe strength and weaknesses of the biomedical and biopsychosocial “models” of illness were explained and participants were then alerted to an emerging paradigm for Pain Medicine, one that transcends the body/mind dualistic thinking so stigmatizing to many people in chronic pain.

Although analgesic drugs were mentioned during the workshop, their relative inefficacy for most patients with chronic pain was emphasised. Instead, more emphasis was placed on understanding the complex clinical manifestations of stress response activation and the clinical consequences that can be observed when these responses are unable to switch themselves off when the danger or threat is no longer present.

The presenters explained the important role of non-drug contributions to pain management that can be offered by the different health professionals. The common theme running through their presentations was the importance of clinicians listening to, understanding, and continually validating the experiences of their patients. The fact that empathy has two sides (positive and negative) was also acknowledged.

Course registrants were provided with a number of key papers to read prior to attending and were also invited to complete an online questionnaire specifically designed to make them aware of their own beliefs and attitudes towards people in pain. They were asked to again complete the questionnaire two weeks after the course had concluded. The results form part of an important research project currently being undertaken by Samantha Bunzli, School of Physiotherapy, Curtin University.

Judging by the completed Course Evaluation forms it is clear that we are providing a unique learning experience for health professionals and, indirectly, for people in pain. To the best of our knowledge, our course is a unique one

Comments from participants:

“Thank you for holding such a relevant and insightful course.”

“Good experiences. Particularly the opportunity to interact/hear from those with chronic pain. The Pain Champions were very open and should be congratulated. The ideal outcome would be to have a list of practitioners/clinics of “like mind” to refer to if necessary.”

“I have enjoyed this course so much with the added benefit of having pain champions to tie all the information together, Thank you!”

“Good energy, enthusiasm, and, importantly, authenticity. It’s very clear you all have ‘purpose’ in this area. I enjoyed it and the humbleness of the group.”

We thank Jamie Martin, Vanessa Watson, Eva Miller, Barb Grinsell, Ezra Tassone, Chloe Hope Johnstone, and Matt Fletcher for so readily agreeing to take part in this workshop and for sharing so much of themselves with participants.

Expressions of interest are being invited for the next workshop to be held in early 2015. Please contact John Quintner: jqu33431@bigpond.net.au or Melanie Galbraith: MelanieG@arthritiswa.org.au


 

Making-Sense-of-Pain-workshop-flyer2Event Date

14th Nov 2014 to 15th Nov 2014

Time

08.30 – 4.30

Registration Closing Date

7th Nov 2014

Venue Information

Wyliie Arthritis Centre
17 Lemnos Street Shenton Park WA

On-site

About the venue
Lunch, morning and afternoon tea provided.

Contact

John Quintner & Melanie Galbraith
John: 0419956418 jqu33431@bigpond.net.au
Melanie: 0405963658  MelanieG@arthritiswa.org.au

Registration

General
$375.00 ea

Event Description

What sets “Making Sense of Pain” apart from other Pain Management workshops and seminars? We show you how to put this information into practice and improve your interactions with patients to ensure more positive outcomes.

This workshop is dedicated to the memory of Robert Elvey [1942-2013], a WA pioneering physiotherapist (pictured on the flyer).

Event Information

  1. Other courses provide the ‘What’ – i.e. information about evidence-based management of people with chronic pain. We also provide the ‘How’ – how to put this information into practice.
  2. We show you how to improve your interactions with patients to ensure more positive outcomes.
  3. We involve ‘pain champions’ – real people with chronic pain.
  4. Our workshop is highly inter-interactive.
  5. You will have access to an on-line questionnaire.
  6. You can join a networking group of past workshop attendees and presenters.

On completion of the course the participant will be able to:

  • (a) understand the current status of Pain Medicine theory in terms of its relative strengths and weaknesses
  • (b) understand the potential role of dysregulated stress response systems in the symptomatology of chronic widespread pain (Fibromyalgia Syndrome)
  • (c) accurately assess the impact of chronic pain on the individual across social, psychological, medical and functional parameters (including standardized outcome measures)
  • (d) promote behavioural change and institute self-management strategies (participants will be exposed to motivational interviewing, mindfulness practice, relaxation, and techniques of education to promote behavioural change) and to know when referral to other health professionals might be indicated
  • (e) have a deeper understanding of the subjective experience of the person in pain
  • (f) be more aware of his/her personal attitude(s) and communication style when interacting with chronic pain sufferers
  • (g) understand the centrality of the therapeutic alliance in effecting positive change outcomes
  • (h) better communicate with the person in pain based on an understanding of empathy in all its connotations
  • (i) provide a person in pain with an accurate, empathic, and confident explanation of their predicament

Read about the presenters on the full post at Arthritis & Osteoporosis WA’s website: www.arthritiswa.org.au
View images from Making Sense of Pain 2013.

Blog | Sexology 101 | The Internal Clitoris

Author:

Hallelujah! Pardon my pun here, especially as I’m preaching sexuality on a Sunday morning but finally, here is some thorough research and attention for the clitoris. Thank you Louise Smith for sending this link to me.. I think it’s essential info for everyone, not just women with PN. Thank you melodiousmsm for writing this and thank you to artist and sex educator, Betty Dodson for the fabulous artwork.

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My Documentary: The Hurting Strings – An Artist’s Story on Pain

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View above or visit The Hurting Strings on reelhouse.org/the-hurting-strings

Let’s watch The Hurting Strings

I’d like to express my biggest thanks firstly to Peter Lamont for taking this project on and for communicating my invisible message with such perfection even after realising what was going to be a four-minute documentary was turning into something much longer.

And to all of you who either contributed through crowd funding, or supported me throughout this process by giving me great courage to see this difficult task through, THANK YOU. Your support is now spreading awareness for chronic pain around the world.

Director’s Notes

Of the very many things that set humans apart from all else, certainly the most beautiful is our ability to express our lives creatively. If emotions were viscous, then life is the palette for the artist to dip their brush. I can’t count the times an artist has said to me “I need to paint just as I need to breathe”; so what happens when that ability to express is cut short?

The Hurting Strings title occurred to me after thinking about the things Soula created as an expression of her accident and the devastating effects the resulting incapacity had on herself and her family.  Odd yet perfectly fitting in one, the idea of a Marionette dubbed Ms. Soula delivered the title. The metaphor makes it patently clear that the strings that guide our lives are not really ours to articulate and in Soula’s case, they are indeed the hurting strings.

I visited Soula about doing a film on an artist, but as we spoke this other undercurrent kept tugging and pulling and it made me uneasy. It made me uncomfortable enough to change focus and step out of my own comfort zone and in that I found I was in good and plentiful company.

Telling the “I hurt myself and it changed my life” story would, on the surface be difficult to avoid the mundane – after all, people have accidents all the time. The path Soula found to deal with it is anything but ordinary. As her sister Koula says “She found the tools she needed” and in the same way a river finds its way to the sea, the story unfolded as a voyage of discovery and relentless creativity. “No-one will do it for you” is as much a call to action as it is a statement of abject reality.

The film then is one of humanity and being human, the inhumanity of a system designed to avoid yet marketed as help. How selfishness the selflessness are actually one, how the inability to deal with the things we can’t see isn’t through lack of want, it’s through lack of definition.

These are interesting stories. Stories worth telling, certainly stories worth reflection.

Pudendal Neuralgia Association, Inc

Author:
(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
Mickey Nilsen
David Podolsky, JD
Clinton Michael Radenbaugh

Our Goals

  • 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.Pudendal Neuralgia Association, Inc

Visual Pursuits book review on Art & Chronic Pain – A Self Portrait

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I’ve mentioned before I live in an art hub of Melbourne. I’ve also made it clear how much I love my community and how much the people living beside me have helped me manage my pain by energising me with their friendship, their creative work and some most distracting conversation.

These inspiring creatives (across all forms of art media), make me feel at ease, even as my painful-Soula-self. Whether in pain, feeling (or not) up to outings, when I appear leaning and sitting in all sorts of positions, and in some cases requiring their help to carry things home, or leave them behind for Theo to pick up later, I always feel accepted and loved, and that makes me so damn happy!

So, when one of those divine people, Marguerite Brown, reviews my book, I feel quite chuffed. In fact more than chuffed, honoured, that she spent her time to write a review in her own beautifully articulated words and publish it on her amazing blog, Visual Pursuits.

For anyone considering purchasing my book, or if you already have, I recommend Margue’s insight, it’s a brilliant review. Here’s a snippet:

In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath.

Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years.  These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.

Soula weaves her story through a spare yet effective use of text, combined with evocative imagery that gives visual form to one of the most insidious aspects of chronic pain, its complete invisibility to the outside world.

To convey the loss of control over her physical being that has been presented by Pudendal Neuralgia, the artist commissioned a marionette in her own likeness by marionette maker Colleen Burke.  The result is an exquisitely crafted and hauntingly realistic version of herself in doll-like form. Soula paints, draws and collages representations of the marionette at various points throughout the book.

Read more…

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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.

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