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pelvic pain

Pain Down There online resource

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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! (more…)

Bridge for Pelvic Pain Presents: 1st Annual Pelvic Pain Seminar

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Full agenda and topics available at www.bridgeforpelvicpain.org

Colorado Springs, CO, United States

This seminar will be an immersion in learning about chronic pelvic pain from diagnosis and treatment to the patient perspective encompassing a mind, body and spirit connection. In this full day event attendees will learn about chronic pelvic pain, integrative treatments and modalities from doctors, physical therapists, counselors, health and wellness experts and patient advocates. While the seminar is geared toward doctors, PTs, integrative healthcare providers and medical students, the information and presentations will also be of value to patients,their significant others and caregivers.
Keynote Presenters: (more…)

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

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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. (more…)

An Integrated Approach to Pelvic Pain

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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. (more…)

Pelvic Pain Foundation of Australia’s Melbourne launch

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PPA Launch - Soula, Lorimer and Anne-Florence

After 4.5 years and desperate, Soula took a stab and emailed Lorimer Moseley who kindly replied and suggested she contact Anne-Florence Plante. Anne-Florence diagnosed Soula instantly.

Melbourne launch March 24, 2015

I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA) Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014.  I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I’ve ‘e-met’ many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN.

Needless to say, last night I went on a magic carpet ride! (more…)

Robert J. Echenberg, MD

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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

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

My Documentary: The Hurting Strings – An Artist’s Story on Pain

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View above or visit The Hurting Strings on reelhouse.org/the-hurting-strings

Let’s watch The Hurting Strings

I’d like to express my biggest thanks firstly to Peter Lamont for taking this project on and for communicating my invisible message with such perfection even after realising what was going to be a four-minute documentary was turning into something much longer.

And to all of you who either contributed through crowd funding, or supported me throughout this process by giving me great courage to see this difficult task through, THANK YOU. Your support is now spreading awareness for chronic pain around the world.

Director’s Notes

Of the very many things that set humans apart from all else, certainly the most beautiful is our ability to express our lives creatively. If emotions were viscous, then life is the palette for the artist to dip their brush. I can’t count the times an artist has said to me “I need to paint just as I need to breathe”; so what happens when that ability to express is cut short?

The Hurting Strings title occurred to me after thinking about the things Soula created as an expression of her accident and the devastating effects the resulting incapacity had on herself and her family.  Odd yet perfectly fitting in one, the idea of a Marionette dubbed Ms. Soula delivered the title. The metaphor makes it patently clear that the strings that guide our lives are not really ours to articulate and in Soula’s case, they are indeed the hurting strings.

I visited Soula about doing a film on an artist, but as we spoke this other undercurrent kept tugging and pulling and it made me uneasy. It made me uncomfortable enough to change focus and step out of my own comfort zone and in that I found I was in good and plentiful company.

Telling the “I hurt myself and it changed my life” story would, on the surface be difficult to avoid the mundane – after all, people have accidents all the time. The path Soula found to deal with it is anything but ordinary. As her sister Koula says “She found the tools she needed” and in the same way a river finds its way to the sea, the story unfolded as a voyage of discovery and relentless creativity. “No-one will do it for you” is as much a call to action as it is a statement of abject reality.

The film then is one of humanity and being human, the inhumanity of a system designed to avoid yet marketed as help. How selfishness the selflessness are actually one, how the inability to deal with the things we can’t see isn’t through lack of want, it’s through lack of definition.

These are interesting stories. Stories worth telling, certainly stories worth reflection.

Pudendal Neuralgia Association, Inc

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(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

Texan Physiotherapist, Sara Sauder interviews me about PN

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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.

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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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