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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

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

A new workers compensation programme in South Australia

Author:

RosemaryI met Rosemary McKenzie-Ferguson advocating an online forum for injured workers. She spoke in a way I’d never heard before, she spoke to me about support, empathy and trust, the ways an injured worker never experiences (I’m vouching for the Victoria’s system).

I’ve since had the pleasure of meeting Rosemary and we’ve become great friends. She’ll be in my life as long as we both live and anyone that has the pleasure of meeting her will say the same.

Rosemary’s efforts to help injured workers have been endless, not to mention exhausting since she’s trying to teach our Australian Government a language they don’t understand. I’m so happy to be able to include this post on my website and hope that it is the beginning of a new global, not just national, workers compensation scheme. Afterall, injured workers simply want to get better and back to work and this is something Rosemary believes and knows how to drive.

I have to warn any injured workers before reading the following, you’ll be left astounded and wondering if you’re in some backward and warped world. You’re about to read the very opposite of what you experience in the current workers compensation system. It’s quite shocking.

If you are in South Australia and are an injured worker, you can seek help from Rosemary’s Bags of Love program. Contact details below.

Craig’s Table

(excerpt by Rosemary)

Craig’s Table is very unique within the world of workers compensation, it is a 40 week community based training programme and community based work placement programme that invites employers in at every stage to see just what is going on and for the first time actually engages injured workers from point of injury to engage in meaningful and supportive engagement/employment that will provide real outcomes for injured workers instead of the current concept of churning injured workers to generate income for the provider but little to no outcome for injured workers.
Craig’s Table will for the first time actually set a benchmark standard so that in the future employers will be able to see that there is nothing to be concerned about in regard to employing an injured worker because the injured worker will be able to show that they have maintained their work ethic and gained very valuable skill sets along the way.

Craig’s Table is as you can see by the attached document not just a training programme, but a life skills training programme, it encompasses leadership training, financial training (the financial training is actually both a personal financial training course and a lead in training course for those who want to enter the world of finance) and ways to not just return to work, but skills required to gain different employment if that is required. There is also the basics of first aid, suicide prevention, food handling, manual handling and fire control.
The training component is (depending on each person) around 12 weeks in length –a lot of it is computer based, though there is also requirements for attending set components.
Each part of the training component will lead into the next stage working within the community based employment/engagement with people being able to opt into a section that is of interest to them.

What we promise is that injured workers will have a minimum of 40 weeks with Craig’s Table, we also accept that some injured workers will leave before the 40 weeks is up and that some injured workers may never leave as they will not be able to regain enough medical clearance capacity hours to move on.

The downside to all of this is that until there is enough funding to start Craig’s Table the project will sit on my desk.
The upside of this is that there is non-workers compensation people interested in setting the community garden and the commercial kitchen in place with plans being worked on and written up.

Craig’s Table has many layers to it, it is envisaged that the number of long-term claimants will drop simply because injured workers will not be isolated as they are now so the secondary depression will not have time to take hold, it is also believed by the workers compensation industry people here in Australia who have seen the concept that the amount of legal disputes will also drop, again because the injured workers will have access to a new set of information and be trained to control their own workers compensation claim rather than allow the legal people to take control. I am in talks with a colleague to be able to use the medical forms that he and a collection of others have written that will actually put real information in place so as injured workers will no longer be ignored or not listened to in the myriad of appointments that the workers compensation systems want them to attend.

Read more about Rosemary’s work at wirc.net.au
Rosmeary’s bio
Craig’s Table overview

P.O. Box 12, Welland
South Australia 5007
Phone: 08 8255 9138
Email: reception@wirc.net.au

Insult and Injury

Author:

How’s this for an opening line to my post:

Perspectives on workers compensation issues from Dr Peter Sharman – Occupational Physician.

Hopeful and hopeful is it not? Finally a practitioner putting it out there and standing up for a better Australian Worker’s compensation system.

It’ll be no surprise that Dr Sharman and I connected over a few tweets of frustration and WorkSafe/WorkCover hashtags. He’s been a fabulous support since, providing honest and open conversation about the primitive ways of the system, whilst expressing his frustration with not being able to help injured workers more. Well, now he is really helping injured workers and I believe it’s time for other practitioners to support him too. Peter has thrown open the topic and put it up for discussion on a fabulous blog platform. He’s also putting his views out there on how we can have a better quality system. I can’t wait to read his posts, they will be a huge support for me particularly now as I am heading back, once again, to conciliation to battle for my rightful compensation after a rejected part payment application (93cd) from my WorkSafe Agent (which now leaves me at 14 months with $0/0% support during my return to work process).

The literature is clear that people whose injuries are managed within a compensation system have worse outcomes, but why? Insurers would have you believe it is all because of fraud, secondary gain or that injured workers don’t want to get better. In reality it is more complex. Certainly there are issues about ’taking responsibility’  for one’s own recovery that can be lacking within a compensation system, but there are many other factors that affect the outcome. Important issues include stigmatisation of workers who put in claims and lack of access to appropriate treatment. The system often unreasonably questions a person’s genuineness, creating a response to prove there has been injury. The system of claims management remains adversarial. Responses include the development of secondary psychological illness which can be more disabling than the original injury. These issues can have dramatic effects on injured workers, i.e. Adding Insult to Injury….

…As a practitioner in private medical practice, I wanted to contribute to debate from my experience of the problems with the workers compensation system. Not only to raise issues, but to put forward solutions. That is difficult as a solo practitioner.

Here’s your chance practitioners, stand up, contribute and speak out. Demand a better Worker’s Compensation system.

Follow Dr Sharman:

Formal Complaint to WorkSafe Victoria

Author:

21st May, WorkSafe’s Andrew calls

My long wait was over, or so I thought, when on 21st May I received a call from a Service Review Analyst working with WorkSafe’s Capability & Service Division.

Yes, it did seem that they had “escalated” my complaint, as promised, and I would at last be given some answers. But my hopes were soon dashed as the guy on the other end of the line tried to explain to me why it was taking so long to deal with my complaint. He told me that WorkSafe was having to seek further information as to whether I was making an additional complaint or was merely hoping for a response to my original one. I made it clear that I was still awaiting a definite response to my original complaint. Having then established that we were both on the same page, the caller said that he was in fact ringing to apologize to me for the delay. No reason for this was given.

When I inquired how he would feel if he was in my situation, he once again apologised to me.

As you might have gathered by now, I found this phone call to have been awkward, uncoordinated, empty and senseless.  It was patently obvious that he had not looked all that deeply (if at all) into my complaint.

Was he inexperienced and being thrown in at the deep end by his manager?  Or had he been told to play “dumb”? I wondered whether WorkSafe really does have a mechanism in place to investigate legitimate complaints! Perhaps their lack of response serves as a tactic to deter most people from pursuing answers to their complaints.

But once more I find myself waiting with “bated breath and whisp’ring humbleness” for some honest answers. Honest answers and compensation payments that I believe are fully justified.

20th May, Soula follows up:

Hi Liz,

Can you give me the ‘relevant person’s’ name and direct contact please? I’m beginning to think they don’t exist. It really shouldn’t take this long.

13th May, from WorkSafe’s, Lizabelle

Hi Soula,

Thanks for your further email.

Please be advised that I have referred your email to the relevant person looking into your complaint for his information and response.

Should you have any further queries…Blah blah

12th May, Soula follows up:

Hello Anthony,

Are you able to follow the ‘escalation’ of my enquiry. I feel it may have been lost on the way…

May I remind you the original enquiry was made on April 4th. Pretty poor on WorkSafe’s behalf I feel.

Soula Mantalvanos

24th April, Soula looks into WorkSafe’s complaint procedure

I was wondering who the Service Improvement Division were after my reply from WorkSafe. I found a WorkSafe Victoria Complaints Handling Policy pdf. I nearly threw up reading this as this is certainly NOT what I’ve experienced in my seven years as an injured worker (or self employer). In fact I can’t believe the words ‘caring’ and ’empathy’ are even used and ‘We live up to our promises’ isn’t true, WorkCover isn’t ‘Quality Income Protection’.

Grab yourselves a bucket injured workers, download the pdf or read my favorite worst bit:

Complaints handling at WorkSafe

WorkSafe Victoria (WorkSafe) is committed to actively seeking client and stakeholder feedback. Complaints about WorkSafe, our authorised Agents or service providers are an important aspect of client feedback. We value this feedback and see it as an opportunity to improve our service.

WorkSafe has developed complaints handling processes which comply with the Australian Standards and Australian Securities and Investments Commission (ASIC) policy statement and encourages anyone who has contact with WorkSafe to provide feedback. There is no fee associated with providing feedback or having a complaint investigated.

WorkSafe will consider all feedback in a manner that is fair both to the complainant and to the party being complained about and which equally values all views.

WorkSafe will manage complaints consistently with its corporate values of being constructive, accountable, transparent, effective and caring.
Constructive
We are constructive in the way we provide information, advice and service.
Accountable
We are accountable for what we do and what we say. We live up to our promises.
Transparent
We work in a transparent way in an environment which is open and honest.
Effective
We are effective by working collaboratively to deliver high quality services.
Caring
We demonstrate care by showing empathy in our dealings with everyone we work with.

7th April reply from WorkSafe’s Anthony:

Good afternoon Soula

Thank you for your email enquiry

Please note that the complaint has been escalated to our service improvement division to manage this query.  They will contact you in relation to this matter

Should you have any further queries or issues, feel free to contact the WorkSafe Advisory Service on 1800 136 089 or 03 9641 1444 or visit us on the web at http://www.worksafe.vic.gov.au.

Advisory Service information and advice is prepared in the context of the information you have provided in your email.  Whilst care has been taken to provide accurate information and advice, the Advisory Service has not endeavoured to advise on all possible contingencies and therefore not intended for other situations or circumstances, as this may affect this advice.

Prior to acting upon any information or advice offered by the Advisory Service, you will need to consider your individual circumstances to determine the application of the advice to any additional statutory obligation or duty relevant to your query.

Email Address WorksafeTo WorkSafe Victoria,

I’d like to formally report the lack of support, frustration, and stress I am experiencing with my claim with (enter WorkSafe Agent name) and within the WorkCover system. I have also been publicising my frustrations as I’m sure your social media management team are aware of but thought to give WorkSafe Vic the opportunity, once again, to handle my issue if I approached via your preferred methods. Having stated this, my previous complaints seem to have been lost to this address, I hope this one doesn’t have the same fate.

Here are my issues: (more…)

Theo, and his ‘carer’s’ perspective

Author:

Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. (more…)

Australian Pain Management Association (APMA)

Author:

APMA LogoLiving with pain can be a miserable existence, but the Australian Pain Management Association (APMA) gives hope that with the right treatment and life skills, your pain will improve and you can enjoy life again. APMA is a non-profit organisation which supports the one in five Australians who live with persistent (chronic) pain. Their Pain Link helpline (1300 340 357) assists people all around Australia with information and options to help manage their pain.

APMA has launched a local pain-support group in Surrey Hills and they are inviting everyone in the community who lives with persistent pain to attend. The new pain-support group will base its program using  a new self-management strategy each month to teach people essential skills to manage their pain.

Meetings take place the 1st Monday of each month at the Holy Trinity Church located on 187 Union Road, Surrey Hills. APMA is a three minute walk from the train station and there is lots of parking right near the church.

There is also a facebook group if people need to chat.

Hayley and Marika are pain advocates and members of APMA and are available for communication on FB or you can call them directly:  Marika  0406450317 or Hayley 0457 172 090.

 

The Hurting Strings, my crowd funding campaign

Author:
Campaign message

Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.

One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.

Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.

Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.

Thank you.

The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.

$6 Billion woman and the $600 Million Girl

Author:
$6Billion woman and the $600Million Girl)

the PELVIC PAIN report

“Pelvic pain, while common, is often a hidden burden to the lives of many women. With emerging national and international knowledge about pain and the heavy toll it poses on individuals and society, it is timely that this report ‘The $6 Billion Woman and the $600 Million Girl’ raises pelvic pain to public attention as an important health issue. This call for action is overdue in a much neglected area of health and healthcare impacting the lives of so many women and girls in our community.” Dr Christine Bennett, MBBS FRACP Master Paed. Professor and Dean, School of Medicine, Sydney. The University of Notre D

This report is an Australian initiative to address human and fiscal burdens associated with conditions causing pelvic pain. It provides solutions to improve women’s health services and outcomes. The intended audiences for the Pelvic Pain Report are state and federal governments, funders, clinicians, consumers, allied health care professionals, researchers and research funders.

(Excerpt from $6 Billion woman and the $600 Million Girl)

Addressing pelvic pain must be a cornerstone of that commitment.

The purpose of this report is to identify the issues in diagnosis and management of pelvic pain, and to provide some solutions to in3luence the future health outcomes for Australian women and girls. Working with Government, Medical Colleges, af3iliated organisations, societies, faculties and those affected by pelvic pain conditions can assist in the implementation of the recommendations that will guarantee bene3its to individuals, the business sector, and society at large. The recommendations have been proposed after strong input from women and girls with these conditions. This has been obtained through the 25 years experience of patient advocacy organisation Endometriosis New Zealand, Australian womens’ case histories, and current Australian and New Zealand social networking comments.

Read more…$6 Billion woman and the $600 Million Girl

Pelvic Pain Steering Committee:

Deborah Bush QSM
CEO and Founder Endometriosis New Zealand,
Advocate for women’s health, and development of innovative health service provision.

Dr Susan Evans
Gynaecologist, Pain Medicine Physician,
Specialist in pelvic pain.
www.pelvicpainsa.com.au
Pelvic Pain SA on Facebook

Professor Thierry Vancaillie
Gynaecologist, Pain Medicine Physician,
Specialist in pelvic pain.
www.whria.com.au

Jane Muirhead and easpain.com.au

Author:
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. (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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