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Self Management: Acceptance, Commitment & Sacrifice

Author:
Elizabeth Banfield_written within
(Image: Written Within* by Elizabeth Banfield hand burnished linocut, kozo tissue, thread ©2017)

My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, again, on this self management business.

Yes, the sacral stim is making a huge difference.

Now remember – I’m talking about my pelvis, my pain experience, my brain, my nervous system and my genes

Three (of my never-ending) realisations for living with chronic pain are that I have to:

  • accept that my life and I have changed – forever
  • commit to a new way of living, and
  • make the sacrifices that it takes to self manage

Chronic pain really blurs life so it takes time to realise the impact (positive or negative) of any treatment or change of activity.

Time seems shorter for me. When I compare myself with full capacity humans, I feel I achieve less and the physical cost is greater.

Not the best value! But it’s what I can get.

The Sacral Stim

The good news is: Continue Reading

Pain Down There online resource

Author:
Stephanie-Yeager-screen

You might recall me plugging the Pain Down There DVD – an extensive resource for women created by Robert Echenberg, Karen Liberi, Alexandra Milspaw, and Stephanie Yeager.

Now the team have taken this a step further, turning the DVD into an online, supported program.

The idea is to offer support and pain management in small groups of 10 – 15 women who start the program at the same time. The video content is released to them online and they also get to meet as a group online with Stephanie as their personal health coach. Individually they have the option to meet with the doctor and PT – all via video conferencing.

Finally! Continue Reading

Can virtual reality really soothe pain?

Author:

How VR could break America’s opioid addiction

Can virtual reality really soothe pain? Jo Marchant meets the doctors who say yes, and who hope this is a solution for the country consuming 80 per cent of the world’s opioid supply: the United States of America.

“It’s like a crawly feeling inside,” says Judy*. “You get hot, then chilled, and you feel like you want to run away.” The 57-year-old has short dark-grey hair and a haunted expression. She’s breathless and sits with her right leg balanced up on her walking stick, rocking it back and forth as she speaks.

Judy explains that she suffers from constant, debilitating pain: arthritis, back problems, fibromyalgia and daily migraines. She was a manager at a major electronics company until 2008, but can no longer work. She often hurts too much even to make it out of bed. Continue Reading

Dr Susie Gronski: How One Artist Used Her Hurting Strings To Stitch Back Her Life

Author:

I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.

Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!

Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.

(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)

Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.

She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.

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Resources for Treating Chronic Pain by the Victoria Pain Specialists (Vicpain) …MY pain team!

Author:

Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.

Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!

Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. Continue Reading

Mark of hope?

Author:

_ Mark of hope_Soula Mantalvanos QGW Lettered print exchangeQueenscliff Gallery & Workshop (QG&W) organised the Lettered print exchange.

A Print Exchange is when artists submit works to a set theme and they exchange each other’s work, each artist keeping a complete portfolio.

An exhibition is held and only a few of the editions are for sale.
Continue Reading

How can you know? There might be better treatment out there!

Author:

I was sure. So positively sure.

I was miles better, my life was saved, I was no longer existing, I was living again.

I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.

But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.

I wasn’t, I hadn’t.

I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)? Continue Reading

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

Author:


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. Continue Reading

Back on the treatment trail

Author:

VicpainHomeScreen

Maybe I should have titled this post, ‘Back on Pain’s roller coaster‘? But then I’d have to explain my position – which would it be? Up or down? Or is this another case of in the middle – managing?

I have many descriptions for my health status and they are constantly revolving around in my head. That’s because I don’t know where I ever stand with this chronic pain. And there seems to be no one else who knows where I (or you!) stand either. So damn frustrating.

But last year, I got fortunate. Someone planted a seed… Continue Reading

An Integrated Approach to Pelvic Pain

Author:

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. Continue Reading

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Definitions of pain

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 aggravated 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.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

Pain Train my online health record

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