Extrapelvic Not Rare was created in 2018 by Dr. Wendy Bingham, DPT. It is a grassroots non-profit organization dedicated to advance awareness, education, and prompt policy changes that leads to earlier recognition, reduced mis and delayed diagnosis of endometriosis of disease outside of the reproductive system and local area among persons afab. EPNR’s target audience includes healthcare disciplines and general public about endometriosis as a disease with bodywide potential.
Board of directors
Dr. Wendy Bingham, DPT
Executive Director and Founder
Dr. Wendy Bingham, DPT, with more than 20 years in medicine, has experienced endometriosis for 33 years, 30 of which were gas-lit by conventional medicine.
As a thoracic endometriosis (TE) patient herself, Dr. Bingham is also a leading researcher and founder of Extrapelvicnotrare.org.
Considered “the voice” of the TE community, she established EPNR to reduce the gap between medical professionals’ limited, oft outdated knowledge and perceptions of endometriosis, to that of persons living with the disease in traditionally ‘rare’ locations. Dr. Bingham brings awareness about, education of, and attention to, all extrapelvic endometriosis. She uses a blended language of science, medical research and personal experience for audiences of healthcare professionals and the public to stimulate conversation about endometriosis as a body-wide disease NOT confined to the reproductive system of persons afab.
Dr. Bingham established the first nonprofit and website exclusively dedicated to extrapelvic endometriosis. She recently presented for The Endometriosis Summit’s annual event in Orlando, Florida and to Iceland’s Minister of Health and Members of Parliament by invitation of the Endometriosis Association of Iceland, both in 2022. She has appeared as a panelist and presenter of webinars to the public, support groups, nonprofits and healthcare students. Additional activities include a series of animated short videos, highlighting issues specific to extrapelvic disease; guest interview for podcasts and recently outreach activities, commencing with women’s fairs with projection to include health/wellness and professional association conferences, as pandemic resolution permits.
As a medical practitioner, Dr. Bingham understands the importance of scientific method and its role in medical advances. As such, support and execution of research, translational to patient care, is part of EPNR’s mission. October 2021, EPNR closed its first research project “Survey of a Select Population of Persons with Surgical Diagnosis of Thoracic/Diaphragm Endometriosis and Their Medical Encounters from Symptom Onset Through Surgical Diagnosis”. Data analysis and draft for publication of results are currently underway.
Prior to EPNR, Dr. Bingham participated in the NCD Alliance ‘NCD’s and Me’ campaign; a catalyst to the World Health Organizations recent acknowledgement of Endometriosis as a global disease and need to develop local-to-global policy changes to address social and economic injustices persons with endometriosis encounter (NCD Story). Dr. Bingham obtained a BS in General Science at Oregon State University, Master of Physical Therapy at University of Maryland Eastern Shore (MPT) and Doctor of Physical Therapy (DPT) at Temple University.
Perry Salzhauer, JD LLM
Director of Legal Compliance
Perry is a corporate and environmental attorney (partner/shareholder) with Greenlight Law Group. He represents and advises, both public and private entities to ensure compliance with laws. His professional interests include sustainability and environmental conservation as they pertain to land-use and business development. In addition, Perry works with businesses to streamline business costs and maximize productivity and profit. He began his professional career in Washington DC, later practicing in and maintains licensure in the states of New York and Oregon.
In recent years Perry served as a chairman for the Cannabis Law Committee of the Oregon State Bar.
Perry graduated from Vanderbilt University Law School, Nashville TN (LD) and received a post-graduate certificate in Environmental and Natural Resources Law (LLM) from Lewis and Clark Law School, Portland, OR. Perry has witnessed the effects of endometriosis on his spouse’s quality of life and understands the impact it has on the person’s support system. Perry currently resides in Seattle, WA with his wife.
Holly Dandurand Director of Finance
Allie Donovan Director of Information Technology
Scientific Advisory Committee
Nick Fogelson
MD FACOG
Dr. Nicholas Fogelson is a board-certified and fellowship-trained gynecologist and gynecologic surgeon in Portland, OR, and the founder of Northwest Endometriosis and Pelvic Surgery.
Dr. Fogelson is committed to providing absolutely world class surgical care to women with complex gynecologic surgical issues including endometriosis, chronic pelvic pain, heavy bleeding, fibroids, pelvic organ prolapse, and incontinence.
Our practice sees patients from Oregon, Washington, Alaska, California, Idaho, Utah, as well as patients from around the country and the world for advanced endometriosis care as well as other gynecologic surgical needs.
Dr. Fogelson focuses on minimally invasive surgical techniques for all surgeries, and is able to complete the vast majority of surgeries via laparoscopy (keyhole surgery), even in cases that might be performed open by many surgeons.
Dr. Fogelson is one of the few surgeons in the country to focus nearly exclusively in the area of endometriosis care, including the management of very complex cases including bowel, urinary tract, and thoracic disease. He is also one of just a handful in the USA to have entered into formal training in the field of neuropelveology, a field dedicated to a deep neurologic understanding of pain and neurosensory dysfunction and new surgical and non-surgical approaches to its management.
Dr. Fogelson is also an in demand speaker and educator on the topic of advanced gynecologic surgery and endometriosis, and gives educational talks and tutors other surgeons both locally and at national and international meetings.
Dr. Fogelson’s career history includes a long history of service in academic medical centers, with previous faculty positions at University of Hawai’i, University of South Carolina, and Emory University, where he was also Chief of Service for Gynecologic Surgery at Grady Memorial Hospital and the first specialty focused minimally invasive gynecologic surgeon at Emory University. Dr. Fogelson moved to Portland, OR in 2015 to enter private practice as part of Pearl Women’s Center, a practice focused on high quality gynecologic care and surgery. Dr. Fogelson left the practice in 2018 to start Northwest Endometriosis and Pelvic Surgery (though we presently still reside in the physical space of Pearl Women’s Center).
Wendy Bingham
DPT
(See bio above)
Shanti Mohling MD, FACOG
Bio coming soon!
Bethany Dixon
MSN, RN, CNOR
Bethany Dixon is a registered nurse with over 15 years experience primarily in surgical services, nursing education, and labor and delivery/high-risk OB. Bethany is passionate about healthcare education and uses her years of experience to enhance her work as a Clinical Editor/Medical Writer.
As an endometriosis patient, Bethany suffered with symptoms for many years before finally receiving a diagnosis in March of 2021. As both an endometriosis patient and healthcare provider, Bethany feels strongly about increasing awareness of endometriosis and encouraging those who are or suspect they are suffering from endometrioses to advocate for themselves.
Bethany obtained her AS in Nursing from Midlands Technical College in Columbia, SC and her MS in Nursing Education from the University of North Carolina Wilmington In Wilmington, NC. She is a Certified Perioperative Nurse (CNOR). Bethany currently resides in Western North Carolina, and in her free time enjoys spending time with her dog, practicing yoga, rock climbing, and reading.
Joseph S. Raccuia
MD
Bio coming soon!
Robert P Sutcliffe
MA MB BChir MD FRCS
Bio coming soon!
Originally Published: August 8th, 2018
Last Updated: February 6th, 2023
Translation Team
Sarah Ducos Meric French Translator
Sarah Méric-Ducos is a translator and student in English studies. Her wish is for her work to be useful to others, by bridging the gap between languages and cultures, thus giving access to useful information to new audiences. This goal has brought her on the path to becoming a specialized translator in the medical field and to align her work with her values of inclusivity, intersectionality and equity. At 19, her life was uprooted by endometriosis, thrusting her onto the difficult path to diagnosis, and the even more complicated quest for treatment and pain management. It is with the utmost trust and pride that she joined EPNR to participate in building awareness and advocacy for those suffering from the disease.
Martina Liel German Translator
After studying literature, Martina Liel was diagnosed with endometriosis in 2004. Besides working as an Online-Journalist, she had been blogging about her life with endometriosis for almost 10 years (blog “Endo Bay”, discontinued). In 2017, Martina´s first endometriosis book got published (“Nicht ohne meine Wärmflasche”, available in German and Polish). In October 2021, her second book about endometriosis and mental health got published (“Endometriose und Psyche”, German). Martina continues spreading awareness for endometriosis with her English-German podcast “Endo Worldwide” and in the German Podcast “Die 3 Endozysters”.
Natalia Forero Spanish Translator
Natalia Forero-Mejia is a Colombian who grew up in a household where language and culture were always celebrated. Her father’s love for languages and culture was an inspiration for her. She has lived in four different countries and currently resides in Canada.
With a Bachelor of Communications and Masters of Cultural Management, Natalia has dedicated her professional life to cross-cultural education. She is passionate about promoting cultural understanding and inclusivity.
Natalia suffered from symptoms of Endometriosis since adolescence. After decades of misdiagnoses, and gaslighting she finally received a proper diagnosis at the age of 41. Following expert surgery for Endometriosis, she discovered a love for running and has since completed three 5k races. She supports extrapelvicnotrare.org, as she believes that everyone deserves an early diagnosis and timely recognition of symptoms, so they don’t have to endure decades of unexplained pain like she did.
Sarah Yvonne Ramos Spanish Translator
Sarah Yvonne Ramos is a proud Mexican- American living in Los Angeles, Ca. She was diagnosed with Endometriosis in 2017 and has spent most of her free time educating herself about the disease in hopes to build community and spread awareness for Latinos in the Los Angeles area. She is the founder of “Chism-Endo,” a monthly social circle to support individuals living with Endometriosis. As an extrapelvic endometriosis patient, Sarah supports the important work that EPNR is doing to address the lack of educational resources about extrapelvic disease.