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Patient to Practitioner Access: Too Much?

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It all started with emails. I bet most medical professionals felt alarmed as email communication began with patients.

Wasn’t the existing scenario suitable enough? Call the receptionist – make several attempts to get through, rattle off suitable dates, wait for that day to come around, get to the waiting room, sit, sit and then finally release that conversation that’s been swirling in your head… if that’s even possible in the allocated 15 minutes.

I’m sure some medical professionals still appreciate and stick by this scenario. I know quite a few that do.

Isn’t life short enough?

Thankfully, my pain specialist (Dr Nick Christelis), and his team have progressed further, throwing their whole practice (Vicpain) on as many social media platforms as they can. 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

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

Robert J. Echenberg, MD

Author:

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

Texan Physiotherapist, Sara Sauder interviews me about PN

Author:

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.

Continue Reading

Jane Muirhead and easpain.com.au

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Ease Pain Home Grab

Ease Pain Home Grab

I’ve mentioned many times that the cyber universe has been the reason for some brilliant introductions and friendships. Afterall, it’s a little tricky getting out and about physically when you have a health issue, but cyber communities still allow us to socialise and ultimately find a very empathic community.

Jane Muirhead, is an Occupational Therapist and Principal of Easpain. As a migraine and headache sufferer for many years herself, Jane understands what it is like to live with a long-term pain condition. She is committed to sharing the benefits she has received from positive lifestyle changes, including mindfulness meditation and gentle yoga with people who suffer from persistent pain conditions.

Excerpt from www.easpain.com.au

What We do

Treatment

For many people medication alone is not enough to really reduce the effects of persistent pain.   Any pain that has gone on longer than 3 – 6 months and is significantly interfering with your quality of life requires a broader approach.

That is why Easpain offers  a range of individual and group treatments, educational resources and products to help reduce the impact of chronic pain on individuals, their family, community and workplaces.

At Easpain we understand just how complex chronic pain is and will work with you to help you to make informed choices regarding your ongoing treatment and rehabilitation options.

This is all part of Easpain’s “whole person” oriented approach.

Reducing the Isolation

Feeling isolated and alone can be overwhelming for people who suffer with long term pain.

Easpain is committed to community education to raise awareness of the huge problem of chronic pain in our society.   Our aim is to educate health professionals, workplaces and the wider community about persistent pain conditions to reduce the stigma and sense of isolation experienced by so many.

Support

Because being able to communicate with other people who have experienced or really understand chronic pain conditions can be such a relief, Easpain also aims to help people in pain to connect to others through support groups and other networking opportunities in Australia and further afield.

Sharing the Knowledge

We know that increased knowledge of your condition leads to greater empowerment.  So Easpain is also about sharing the latest research and uplifting stories from around the world about the best practices and new advances in treating and managing persistent pain conditions. Continue Reading

Pelvic Health and Rehabilitation Center

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Thanks to Barry who contacted me in hope of creating awareness for male PN, I’ve been alerted to another great Pelvic Pain Centre, this time in California. Of course I can’t speak from first hand experience but what I’ve read shows great support and understanding and the therapists are open and welcome conversation on their site. Yes, questions are welcome and you can look forward to a response. I recently reposted their great story: How do I know if I have PN or PNE?

Here’s an excerpt from their site and a few direct links (the blog is a little tricky to navigate).

We are the Pelvic Health and Rehabilitation Center

We specialize in physical therapy management of myofascial pelvic pain and pre- and postpartum women. We believe in a multi-disciplinary, collaborative approach to diagnose and treat patients holistically. We support both the physical and emotional health of each patient and their families in a respectful and compassionate environment.

Pelvic pain search on www.pelvicpainrehab.com/blog

www.pelvicpainrehab.com/blog

Clinic locations:

3515 Grand Ave, Oakland, CA 94610 | Phone: 510.922.9836 | Fax: 510.922.9949
2000 Van Ness Avenue, Suite 603, San Francisco, CA 94109 | Phone: 415.440.7600 | Fax: 415.440.6803
15047 Los Gatos Blvd Ste 180 Los Gatos, CA 95032 | Phone: 415.440.7600 | Fax 415.440.6803

Visit the Pelvic Health & Rehabilitation Web site at: www.pelvicpainrehab.com

MR Neurography, I’d fly for that!

Author:

(Excerpt from Dr. Aaron Filler’s website www.nervemed.com/about/dr-aaron-g-filler-md-phd)

Dr. Aaron G. Filler, MD PhD FRCS

Dr. Aaron Filler is the world’s leading expert in treatment of nerve pain. He has revolutionized nerve-pain treatment by inventing several new technologies. One such technology, MR Neurography, enables doctors to use an MRI scanner to examine nerves, previously a difficult-to-impossible tissue to visualize with MR imaging. Dr. Filler’s research in axonal transport is leading to a whole new generation of advanced pain medications. He has developed many new “minimal access” surgery methods that allow him to treat complex nerve problems with small outpatient surgeries. He has also pioneered the use of the Open MRI scanner to do surgeries and other therapies with the ultra-high precision and safety of the magnetic resonance imaging.

At Dr. Filler’s Institute for Nerve Medicine in Santa Monica, California, the key to success remains a very traditional endeavor: listening to the patient and doing a thorough and expert neurological examination. Dr. Filler typically spends more than an hour with each new patient. The results of the initial examination are then strengthened and perfected with application of advanced technology available nowhere else in the world. Continue Reading

PN Directory: Who can help and where in the world are they?

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Pudendal Neuralgia treaters around the world

I’m sure there are more practitioners and therapists helping with Chronic Pelvic Pain but these are the ones I have been in touch with or have been referred to from other specialists. Please let me know if you have been treated appropriately so I can keep my resource up-to-date. I do particularly want to hear personal recommendations but I also need approval to list anyone here.

Australia

Melbourne

Adele Burgess
Head of Dept. Colorectal Surgery
The Austin Hospital, Heidelberg, VIC.
Private Consulting Main Rooms:
Suite 7, Level 2, 8 Martin Street, Heidelberg VIC 3084.
Phone: 03 9456 9077 Fax: 03 9456 9177
Also at : Epworth Hospital, Richmond VIC
www.adeleburgess.com.au

Peter Courtney
499 Springvale Road, Glen Waverley, VIC, 3150
Phone: (03) 9566 2733
Melbourne Pain Group

Dr Bruce Mitchell
Metropain Group

Sports & Interventional Pain Physician
Level 1, 544 Hawthorn Road, Caulfield South Victoria, 3162
Phone: (03) 9595 6111
bmitchell@metropain.com.au
www.metropain.com.au

Julienne Moore
Associate Physiotherapist
Albert Street Medical Centre
Level 4, 372 – 376 Albert Street, East Melbourne, Victoria, 3002.
Phone: (03) 9486 0512
julienne@fitwise.com.au
www.fitwise.com.au

Pain Matrix
Dr Michael Vagg – Pain Specialist, Dr Diarmuid McCoy – Pain Specialist, Dr Brett Chandler – Pain Specialist, Jenny Bravin – Psychologist, Emma Musella – Clinical Psychologist, Dr Stephen McKenzie – Psychologist, Lucy Schipanski – Physiotherapist, Ben Boyd – Practice Manager
Suite 8 | Level 2 | 73 Little Ryrie St
Geelong Victoria 3220
Phone: 03 5229 6996 Fax: 03 5229 0941
info@painmatrix.com.au
www.painmatrix.com.au

Anne-Florence Plante
Pelvic Chronic Pain,
The Women’s Physiotherapy Department
The Women’s chronic pelvic pain pdf

Professor Teddy
(Responsible for my peripheral stimulation device)
Precision Neurosurgery

Phone: 1300 773 247
info@precisionneurosurgery.com.au
Neurosurgeon, The Royal Melbourne Hospital, Western Hospital, and Northern Hospital

Victorian Pain Specialists
(my current treatment team)

27 Erin Street
Richmond VIC 3121

1300 798 682 (tel)
1300 798 385 (fax)
reception@vicpain.com.au
vicpain.com.au

Queensland

Sue Croft Physiotherapist
Physiotherapy for Pelvic Floor Recovery
47 Hampstead Road, Highgate Hill, Qld, 4101
Phone  07 3848 9601 Fax 07 3846 6811
Mob: 0407 659357
www.suecroftphysiotherapist.com.au
twitter.com/scroftpf

Peter Dornan Physiotherapy (Specialising in Men’s Health)
13 Morley Street,
4066 Toowong QLD, Australia
Phone: 07 3371 9155
peter@peterdornanphysio.com.au

Robin Kerr
Integrated Pelvic Physiotherapy
7 Maud Street Nambour QLD, 4560
Phone:(07) 5441 4764
robin@ipphysio.com
www.ipphysio.com

South Australia

Dr Susan Evans
38 The Parade, Norwood SA, 5067
Phone: 08 8363 2811  – for appointments (except physiotherapy)
Phone: 08 8363 7071 – for physiotherapy appointments
drsusanevans.com.au

Sydney

Sherin Jarvis
Pelvic Floor Physiotherapist and a Conjoint Lecturer, UNSW
Level 12, 97-99 Bathurst St, Sydney,
Phone: 1300 722 206
info@whria.com.au
Women’s Health and Research Institute of Australia

Thierry Vancaillie MD (Belgium), FRANZCOG, FFPMANZCA
Gynaecologist and Pain Medicine Specialist
Conjoint Professor, UNSW
Level 12, 97-99 Bathurst St, Sydney,
Phone: 1300 722 206
Women’s Health and Research Institute of Australia

Western Australia

Alison Lutz
APA Continence and Women’s Health Physiotherapist
Hillview Physiotherapy
6/294 Gt Eastern Hwy
Midland  WA 6056
Ph:08 9274 5666 Fax: 08 6230 5376

Timothy J G  Pavy
Head, Department of Anaesthesia and Pain Medicine
King Edward Memorial Hospital for Women
374 Bagot Road, Subiaco, Western Australia 6008
Clinical Associate Professor, School of Medicine and Pharmacology, University of Western Australia
Phone: 08 9340 2222 Fax: 08 9340 2227
Tim.Pavy@health.wa.gov.au

Judith Thompson
Dip Physio, Post Grad Dip Continence and Women’s Health,
PhD, FACP, APAM
Clinical Director & Specialist Continence and Women’s Health Physiotherapist
Shenton Park Clinic
215 Nicholson Road Shenton Park WA 6008
Phone: 08 9381 7940 Fax: 08 9381 7941
www.bodylogicphysiotherapy.com

Continue Reading

Back to life

Author:
Soula's Business Card Origin of Image

Soula's Business Card Origin of Image

Words… searching, searching… any second now… … … almost… actually, nope.., it’s not going to happen.  As if there’d be ANY words for me to explain how I feel writing this post. So please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:

“I’M BACK AT WORK!!!!!!!”

No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!

And, I definitely mean to sound excited. After all, I conquered a beast that came pretty close to defeating me and keeping me virtually still for the rest of my days (sadly I’ve not killed it completely but I’m still hopeful!).

It’s been 2,063 days since my ball went burst…

…or

5 years, 7 months, 23 days (including today)

…or

178,243,200 seconds

…or

2,970,720 minutes

…or

49,512 hours

…or

294 weeks (since I’m kindly rounding down but in reality pain calls for rounding UP).

I feel like… like… ME! And there isn’t a greater feeling. Continue Reading

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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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