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Diagnosis: A Can of Worms

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Can-of-Worms

WARNING: This post contains serious attitude as a result of 10 years of personal experience with chronic pain. The post also contains my personal no nonsense view of living with a chronic illness and (much required) rotten sense of humour, whopping reality check and bonus kick up the backside for anyone who refuses to accept they have a serious health issue.

*Proceed with caution*

Well, surely you can’t blame me for having that kind of attitude after 10 years!

Recently, it dawned on me that when I was diagnosed with chronic pain, it felt like I had been handed a can of worms.

I’ve been mulling over this thought while procrastinating about a second follow-up appointment since my sacral neurostimulator treatment. Specifically, I thought about the time that goes by while I – sometimes neglect to face the intensity of my health issue and what the consequences are as a result of that neglect.

Yep, it translated to a can of worms. Continue Reading

Can looking at art make for better doctors?

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(Article published on The Conversation)

In 1984, artist Jon Cattapan’s sister Adriana died in a car accident. His painting, titled Sister, and some accompanying drawings, were a response to this tragedy. Sister depicts a grey-shrouded body lying on a bright red structure. Behind it are five figures in two separate groups. One represents living relatives and friends; the other, the spiritual world.

Sister’s distorted figures reflect Cattapan’s interest in primitivism and animism. Its colours and twisted forms project his anguish, and express the heightened intensity of the state of grieving. Cattapan has written about the disorientation experienced in grieving and also how the “topsy-turvy” space in all the Sister images represents his sister’s schizophrenia.

One day, a few months ago, a group of third year medical students spent a long time looking at these works, which were on display at the Ian Potter Museum of Art at Melbourne University.

They were encouraged by the Museum’s Academic Programs Curator to describe aspects of the painting as objectively as possible – its style, colours, content. Then they began to share their personal interpretations of the narrative.

Jon Cattapan, Sister, 1984 (oil on canvas). The University of Melbourne Art Collection, Gift of Jon Cattapan 2008.

Was the prone figure in the foreground dead or dying? What elements were more powerful? The Christian iconography and emotion on the figures’ faces? Their gestures? The insistent vibrancy of the colours? Or the apparently chaotic mix of formal elements? How did their interpretation change when the examination shifted to the Sister Drawings, hung alongside the painting, which are like snapshots of aspects of the story?

Continue Reading

Drug dependency lessons from Pharma ads and my two mothers

Author:
Carrying Dog

I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.

It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.

It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.

Back to the TV.

Continue Reading

Robert Wanek, Creating awareness for Chronic Prostatitis and Pelvic Pain Conditions

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I cyber met another amazing human being, Robert Wanek, who sadly has his own Chronic Prostatitis and Pelvic Pain story to tell… and so brilliantly does he say it, I just had to include it on my website.

You can follow Robert’s journey on his website: malepelvicpain.weebly.com

Robert, I hope you escape this world of pain forever.

Anyone suffering from prostatitis, epididymitis, pelvic pain, orchalgia, or related conditions; follow my blog. Share your stories. On my blog is a macro of my journey over the past 6 months dealing with idiopathic Pelvic Pain. 4 doctors, countless tests, no progress. To see where I’m at now you can check my blog as I will be updating daily with PT appointments, holistic treatments, lifestyle changes, and of course updates on the pain. I hope to share stories from other sufferers and any treatments and research coming out in the near future.

All copyrights to the rightful owners. I do not own the song in this video. This video is for non-profit educational purposes, dealing with a major health issue.

Social Media for Pain Education, Pain Australia

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Pain Australia Logo

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013

Pain Australia Logo

Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website Pudendal Nerve.

Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.

Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online

“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”

After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.

He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.

“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.” Continue Reading

A Pained Life: Timing My Pain

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Excerpt from American News Report: by Carol Levy, Columnist

Pained Life CoverI was sitting at a table with some people I knew, slightly.

I did not know how much of my situation they knew, but the issue came up about my not being able to work.  I told them about the pain that comes from any consistent use of my eyes for more than 10 to 20 minutes before the pain becomes too severe for me to continue.

They immediately came up with suggestions, most of them centered on using a timer.

“Set it for 15 minutes so you will have to stop,” they suggested.

That’s a good idea.  In fact, I came up it with a long time ago.  The only problem is, it’s a lot easier in concept then reality.

I am reading a mystery, my favorite kind of story.  The book is getting exciting, the clues mounting, the name of the person “who dunnit” to be disclosed in… wait, bringgg!

Off goes the timer.  I can’t stop now.  I have to find out who did it.

I know better, but I think, as I often do, five more minutes won’t make a difference. 

But of course, it does.

Sometimes it is more important eye work, writing this column for instance.  I cannot break off in the middle.  I lose my train of thought and have to start over, which means going past the time limit the next time I work on it.

Sometimes I get to the point where I need to stop, but in order to not lose my concept, I continue making notes; which takes me past my time limit. The pain is then at the point of no return, at least for the next hour or more.

If I go to a store, I need more than 15 minutes to find what I need.  I use my eyes the entire time.  I cannot just stop.

The same is probably true for most of us.  The time allotted before the pain becomes unmanageable is usually taken up with getting ready to do whatever task is at hand.  By the time we are in the midst of doing what we set out to do, the time is up.

From the outside looking in, the answer to keeping the pain at an “acceptable” level is simple.  Just stop.  I daresay it would be easy if this was not our lives.

If it was just a a short term problem, a sprained ankle or a scratched cornea for instance, it is no big thing to keep our usage of the pained area to a minimum.  When it’s a constant pain, the timed approach is not workable.

When I try to explain that to people, I see the eye rolling, the turning away: she doesn’t want our help.  She doesn’t want to change her situation.

They have no idea how dearly I want that. Continue Reading

Next stop: Traditional Chinese Medicine with Raffaele Vavala

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Acupuncture6Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of it’ until about a year ago my onion was just too big!  But I also believe some practitioners do have more of a gift than others and Raffaele is gifted!

The consultation methods make great sense to me. My scans have been considered, but my tongue, palms and pulses on both wrists do all the pain and story telling. These body parts describe a system that is quite debilitated after dealing with the years of Chronic Pain, an issue Raffaele understands in-depth. So when I speak of sounds hurting, activity accumulating into a flare up fire-ball, fluid retention, my legs unable to move with extreme heat conditions, the desperation for Western intervention in the form of an implant and nerve blocks, my exhaustion that arrives with the pain and ‘protects me’ by encouraging me to sleep, the inability to focus, reach out and ‘just move that thing’ or carry out a simple task, the ability to create seeming too exhausting, Raffaele understands… ALL OF IT.  He reminds me of my diagnosing physio, and for once I’m the one staring in disbelief at their look of complete understanding for me (when other practitioners screwed up their faces or frowned at my statements). Continue Reading

(Hardly) Happy 1st birthday pudendalnerve.com.au

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Well it’s hardly a birthday celebration! But certainly a time to reflect and assess myself and the achievements of PudendalNerve.com.au. The total visits in 12 months total an astounding 21,500 and the search terms are a clear indication that still, so little is understood of Pudendal Neuralgia worldwide.

The first note must be of thanks and of course, has to go to my husband Theo. Without Theo’s daily help this site simply wouldn’t be up and running…. neither would I!

Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I’ve made in the past year. I’ve met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue in the hope of resolving it (and not just for my sake), and/or try to voice my improvements for an ignorant WorkCover system.

As far as my personal one year status goes, I definitely have ‘progress’ to celebrate; I’m running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep and in much less pain. Although I’m still much limited with capacity and rely on daily help and regular massage, I’m able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon.

Nerve Block Cake & Candle

Here are some more specific, but also saddening, statistics that may be of interest to my subscribers and visitors (and my very loyal spies!): Continue Reading

Health Organization for Pudendal Education (HOPE)

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HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.

HOPEBracelets

HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE).  If you have come to this website it is probably because you are in pain or you know someone who is in pain.  Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back.

Visit the website: www.pudendalhope.org or sign up to the forum

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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…

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