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Back on the treatment trail


So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you’re in pain thinking ‘if this friend tells me I need to meet someone and sustain a new friendship, I’m going to punch him’ – but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago (like eight years ago for me).

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Robert J. Echenberg, MD


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.


Dr. Bob Echenberg
Member:  International Pelvic Pain Society
Co-Author: “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships

Dr Echenberg http://www.instituteforwomeninpain.comOffice phone:  610-868-0104

Bridge for Pelvic PainCarin E. Willis
Founder & Executive Director, Bridge for Pelvic Pain
Skype/Phone number: 719.445.7040
Facebook: Bridge for Pelvic Pain
Twitter: pelvicpainB4PP

Pudendal Neuralgia Association, Inc

(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


I 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….

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Insult and Injury


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…

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Formal Complaint to WorkSafe Victoria


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

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Theo, and his ‘carer’s’ perspective


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.

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Australian Pain Management Association (APMA)


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

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…

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$6 Billion woman and the $600 Million Girl

$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…

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This chronic pain advocate could do with a little help to maintain her site. Your $3 per year makes a huge difference and shows me you appreciate what I do. Subscribe to keep reading Soula's personal posts

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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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