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pudendal neuralgia

How can you know? There might be better treatment out there!

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I was sure. So positively sure.

I was miles better, my life was saved, I was no longer existing, I was living again.

I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.

But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.

I wasn’t, I hadn’t.

I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)? (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…)

PNA Pudendal Neuralgia Patient Conference 2015

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Register at: pudendalassociation.org

For Patients with Chronic Pelvic Pain
SEPTEMBER 25, 2015
Sheraton Annapolis, ANNAPOLIS, MARYLAND

TopicsPudendal Neuralgia Conference 2015 flyer

  • Overview of Pudendal Neuralgia: Concomitant Conditions: IC, Vulvodynia, Vestibulitis, Endometriosis, Irritable Bowel Syndrome, and Non-surgical Treatments
  • Anatomy of the Pudendal Nerve / Magnetic Resonance Neurography
  • Physiology of Pain / Image Guided Nerve Blocks/ Radiofrequency Ablation, and Cryoablation
  • Integrative Medical Therapies for Pudendal Neuralgia
  • Physical Therapy: A Non-Invasive Treatment Option for Pudendal Neuralgia
  • Surgical Treatments: Transgluteal Pudendal Neurolysis
  • Neuromodulation for Pain, Bowel and Bladder Incontinence
  • Cognitive Behavioral Therapy, Mind/Body Techniques and Biofeedback
  • Psychotherapy: Body, Mind and Spirit

(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

My interview with the Australian Pain Society

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APS Pain Recovery JourneyA pain recovery journey shared

(Excerpt from Australian Pain Society’s blog. Read the full interview here)

We recently had the opportunity to interview Soula and gain her valuable insights.
We hope you enjoy this blog post and possibly find some useful tips.

APS: Would you describe your pain recovery journey as having a ‘turning point’?

Soula:     There have been a few turning points but two main ones:

  • Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
  • That led, shortly after, to my diagnosis which has been the key to my recovery.

APS: What 3 things would you rate as your biggest lessons in your pain recovery journey?

Soula:

  1. Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
  2. That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
  3. That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.

(more…)

ANZCA Bulletin: Simple Accident Leads to Life of Pain

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(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. (more…)

Committment, sacrifice and granting myself the right permissions

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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…)

Pudendal Neuralgia Conference for Physicians, Waltham US

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(Excerpt and bookings pudendalassociation.org)

Pudendal Neuralgia Conference

A LIVE CME ACTIVITY FOR PHYSICIANS
Saturday September 27, 2014
7:30 AM-5:30 PM
The Conference Center at Waltham Woods, Waltham, MA

8 credits, Category 1
Pudendal Neuralgia Association, Inc. poster

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

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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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