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Dr Doidge, Are Some Brains More Plastic than Others?

Author:
DrNormanDoidge02

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

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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…)

What do I do with my trigger points now, Dr Quintner?

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John Quintner, Professor Milton Cohen and Dr Geoffrey Bove recently published a very controversial review – A critical evaluation of the trigger point phenomenon. Their article aims to show the hypothesis – “Myofascial Pain arising from Trigger Points” – formulated in the 1980s by Travell and Simons, is ‘flawed both in reasoning and in science’.

Being closely aquainted to John (albeit via cyberspace), I sought a patient’s explanation. What does this mean for me and others with chronic pain erroneously attributed to myofascial trigger points?

How many years have you been practising and researching chronic pain?

I commenced my career in rheumatology in 1975. My interest in chronic pain dates from 1985, when I admitted to myself that I had no idea about what was then being called “RSI”. Without a research background I was left with no other option but to learn “on the job”. I remember that some of my rheumatology colleagues would laugh at those of us who were making a serious effort to understand these conditions. But these were extraordinary times when a fierce debate over the validity of “RSI” as a compensable condition was raging across Australia.

Do you believe pain will be explained one day?

The short answer is NO. Attempting to explain the experience of pain is inextricably linked to our inability to explain consciousness. You could ask if we will ever explain LOVE and I would give you the same answer.

What might your research mean for someone with chronic pain?

Along with those with whom I have collaborated, and the list includes Professor Milton Cohen, Mr Robert Elvey and Dr Geoffrey Bove, my research has been aimed at shining the torch of critical scientific inquiry upon a number of complex and poorly understood conditions. From our attempts to do so, I hope that in some small way we have helped people in chronic pain to avoid the stigma that is so often conferred upon them by members of our society, including their well-meaning medical and other health professionals. (more…)

ANZCA Bulletin: Simple Accident Leads to Life of Pain

Author:
(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

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. (more…)

Blog | Sexology 101 | The Internal Clitoris

Author:

Museum Of Sex Img_0927Hallelujah! 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.

(excerpt from The Internal Clitoris. Read full post here)

…Let’s also remember, female orgasm is not solely about the clitoris and vagina either. It is far more complex and also involves the workings of multiple nerves, tissues, muscles, reflexes, and mental effort. Some women can think themselves to orgasm. Others can orgasm simply by flexing their pelvic muscles. Considering all the components involved plus the variability of human beings and their anatomies, it’s extremely important to remember no two people are the same. What works for one woman may not work for another. In other words, it’s all custom under the hood….

…What really blows my mind is the plethora of misinformation that exists in textbooks, professional medical guides, and on the internet. Take for example, in one of my undergraduate textbooks titled Understanding Human Sexuality, the clitoris is depicted merely as just the glans. The sad fact is it wasn’t until the 1990’s that researchers began using MRI to study the internal structure of the clitoris. By then, the intricate details of the penis were already well-known.

(Some of you may find these drawings explicit. You may also have to turn off your ‘safety’ to watch this)

(more…)

Texan Physiotherapist, Sara Sauder interviews me about PN

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Excerpt from Sullivan Physical Therapy‘s Sara Sauder. Read the full interview on her blogspot.

Sara Sauder's BlogspotSoula Mantalvanos is an Australian artist living with pudendal neuralgia.  She runs a website  and a blog that chronicles her life since developing pelvic pain.  These mediums are helping people around the world learn more about pudendal neuralgia (PN) and how to find the much deserved medical care they need.  Soula has created a book titled Art & Chronic Pain – A Self Portrait which portrays her pain experience in the most beautiful and honest way.  Most recently she gave a talk to 180 pain specialists at Australia’s 2014 Alliance for Improving the Management of Pain.  She is an open person.  Soula was willing to answer my questions and I am thankful for this as she is very eloquent in shedding light into what it is like to live with a pain that no one else can see.

Please know that this is Soula’s story.  Your story is just that – your story.  If you have pelvic pain, I want you to appreciate that each narrative and each journey is unique.  Gather what you can from listening to others that know what you are going through, learn from what they have to say and use that to take one more step forward.

(more…)

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…

The book: Art & Chronic Pain – A Self Portrait

Author:

SelfPortraitBookDustJacketYes, 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. Afterall, first and foremost, before the person in pain, I am 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.

Art Chronic Pain Soula Mantalvanos-01

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.

(more…)

My pain feels like…

Author:

My Pain Feels LikeThis 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 you can enter your own in order to get a printed report that you can take with you to an appointment. It’s a fabulous idea and that’s because it actually communicates modern day pain language, none of this ‘what is your pain on a scale of 1 to 10′ narrow minded business.

(excerpt from mypainfeelslike.com)

You can view, read and learn from patients with similar experiences. You may also like to use the ‘my pain questionnaire’ to record your symptoms and take a print-out of the results to your doctor appointment.

Your assessment will help your doctor to diagnose the reason for your pain and also provide advice on appropriate treatment options.
Select any of the stories below to learn more.

My pain feels like… has been developed by Grünenthal GmbH in collaboration wtih Montescano Pain School.

The Pelvic Pain Library

Author:
The Drawing Wall At Ooi

Here is my attempt to gather all references I’ve come across or that I 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, I thought this could 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 their 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. (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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