SWHR

Endometriosis and Fibroids network

The normalization of women’s pain and the stigmatization of menstrual issues have resulted in a lack of scientific innovation and public awareness for endometriosis, uterine fibroids, and related conditions.

An estimated 10% of reproductive-age women are living with endometriosis, a condition in which tissue that resembles that of the lining of the uterus grows outside the uterus, leading to lesions, heavy bleeding, and painful periods.

About 26 million women suffer from uterine fibroids, a condition in which benign tumors growing in and around the uterus cause heavy and irregular bleeding and anemia.

SWHR’s Endometriosis and Fibroids Network is working to engage and educate patients, clinicians, and health care decision-makers about the burden of these diseases, which significantly impact the lives of the women.

Network Goals

SWHR’s Endometriosis and Fibroids Network is a diverse group of researchers, health care providers, patients, and health care opinion leaders working to:

  • Identify unmet needs and articulate necessary incentives to drive innovation in research, diagnosis, and treatment for endometriosis and uterine fibroids.
  • Engage and inform patients, health care professionals and providers, payers, policymakers, and employers about the patient experience, disease burden, stigma, and impact to society.
  • Develop strategies and materials to inform and impact value-driven decision-making about endometriosis and uterine fibroids in diagnosis, treatment, and access to care.

Our Work

Check out our latest publications, policy engagement, and scientific discussions.

Filters
Event
Elevating Endometriosis to a Public Health Crisis
SWHR hosts this virtual public forum to discuss the impact of endometriosis on women’s health and to highlight persistent gaps in diagnosis and treatment. 
January 30 @ 11:00 am - 12:00 pm EST
Guides & Toolkits
Endometriosis Toolkit: A Guide For Teens
The Endometriosis Toolkit: A Guide For Teens was made to empower teenagers who have menstrual health questions or are living with endometriosis to better understand their health and navigate their care. 
Guides & Toolkits
Kit de Herramientas para la Endometriosis: Guía para Adolescentes
La Society for Women’s Health Research (SWHR) creó el Kit de Herramientas para la Endometriosis: Guía para Adolescentes para empoderar a las adolescentes que tienen preguntas sobre la salud menstrual o viven con endometriosis para entender mejor su salud y orientarse en su atención. 
Event
Elucidating Endometriosis: Persistent Gaps in Research & Care
Endometriosis is a chronic gynecological disease that affects more than 200 million women worldwide. Endometrial lesions tend to form in the pelvic cavity outside of the uterus, causing pain in a woman’s pelvis and back, between periods, and with intercourse, as well as heavy menstrual bleeding and infertility. In fact, 30-50% of individuals with endometriosis... Read more »
September 11, 2023 - September 12, 2023
Fact Sheets
Closing the Gaps in Endometriosis Research & Care
SWHR published this fact sheet to highlight the role that policy can play in improving outcomes for individuals living with endometriosis.
Event
VCU Health of Women 2023 | Emerging Topics in Women’s Health: A Focus on Uterine Health
For more than 30 years, the Society for Women’s Health Research (SWHR) has led interdisciplinary groups of researchers, health care providers, patient advocates, and policy leaders to address diseases and conditions that disproportionately, differently, or exclusively affect women. SWHR’s work in the uterine health space has been leveraged to inform disease prevention and treatment and to... Read more »
May 18, 2023 @ 12:00 pm - 1:30 pm EDT
Policy Engagement
Fibroid Awareness Month Toolkit
July is Fibroid Awareness Month, a time to raise awareness for uterine fibroids and the policy changes needed to improve health outcomes for women.
Policy Engagement
SWHR Supports Bipartisan Legislation to Make Critical Investments in Endometriosis Research and Awareness
Representatives Lauren Underwood and colleagues for introduced the Endometriosis CARE Act, which will provide critically needed funding to advance our understanding of endometriosis.
Event
Focus on Fibroids Series: Empowering Women through Personal Journey-telling
SWHR hosted this webinar as part of our Focus on Fibroids Series: Empowering Women to Live Well with Uterine Fibroids to share educational information about uterine fibroids, including diagnosis, treatment options, access to care, and disparities, as well as and highlight the experiences of women living with fibroids.
December 6, 2021 @ 12:00 pm - 1:00 pm EST
Event
Focus on Fibroids Series: Tools to Navigate Optimal Care
SWHR hosted this webinar as part of its Focus on Fibroids Series: Empowering Women to Live Well with Uterine Fibroids to share educational information about uterine fibroids, including diagnosis, treatment options, access to care, and disparities, as well as highlight the experiences of women living with fibroids.
November 29, 2021 @ 3:00 pm - 4:00 pm EST
Peer-Reviewed Articles
Uterine Fibroids: Assessing Unmet Needs from Bench to Bedside
SWHR published a report in the Journal of Women's Health capturing themes and recommendations from an interdisciplinary Uterine Fibroids Working Group, convened by SWHR.
Commentaries
Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay
A commentary in International Journal of Environmental Research and Public Health, presents "the clinical characteristics and physical and mental health consequences associated with endometriosis.
Event
Congressional Briefing: Supporting Women with Fibroids Through Policy Action
SWHR hosted a virtual congressional briefing to raise awareness of policy needs to improve care for individuals with uterine fibroids, a condition that is underfunded and often overlooked in research. 
July 13, 2021 @ 10:00 am - 11:15 am EDT
Fact Sheets
Focus on Fibroids Fact Sheet
Check out this SWHR fact sheet to learn more about fibroids and The Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021.
Guides & Toolkits, Video
Endometriosis Toolkit Video Series
SWHR's Endometriosis Video Toolkit features segments on each of the areas covered in the original toolkit.
Event
Supporting Our Sisters: Transforming Uterine Fibroid Awareness into Action
The Congressional Caucus on Black Women and Girls hosted a virtual event, supported by SWHR, raising awareness of the astounding impact of uterine fibroids on the health of women.
March 23, 2021 @ 5:30 pm - 7:00 pm EDT
Guides & Toolkits
Endometriosis Toolkit: A Patient Empowerment Guide
SWHR's Endometriosis Toolkit is designed to empower people of all ages with endometriosis in navigating their care.
Event
Endometriosis Awareness: Empowering Patients
This SWHR webinar provides valuable insight for both patients and health care providers on opportunities to empower individuals living with endometriosis.
March 16, 2021 @ 3:30 pm - 4:30 pm EDT
Policy Engagement
SWHR Urges Congressional Leadership to Prioritize Endometriosis Research Funding
SWHR sent a letter to Congressional leadership in support of endometriosis’ inclusion as an eligible condition under the Department of Defense’s Peer-Reviewed Medical Research Program for fiscal year 2021.
Event
Focus on Fibroids: What Do Women Need for Better Care?
SWHR hosted a virtual panel discussion to raise awareness about research gaps and unmet needs related to diagnosis, treatment, and access to care for uterine fibroids.
September 22, 2020 @ 4:00 pm - 5:15 pm EDT
Event
Assessing Research Gaps and Unmet Needs in Uterine Fibroids
SWHR convened a closed-door virtual roundtable meeting to discuss the gaps in research, clinical practice, and patient education that need to be filled to improve health outcomes for women with fibroids.
September 21, 2020 - September 22, 2020
Policy Engagement
SWHR Applauds Uterine Fibroids Research and Education Act
SWHR President and CEO Kathryn Schubert, MPP, released a statement in support of the Uterine Fibroids Research and Education Act.
Policy Engagement
SWHR Supports Uterine Fibroid Research and Education Act
SWHR signed onto a congressional letter of support for H.R. 6383, the Uterine Fibroid Research and Education Act of 2020.
Commentaries
Advance Innovations in Pain Management for Women
Women in pain need innovation. In a commentary in Morning Consult, SWHR CEO Dr. Amy M. Miller shines a light on how women are disproportionately affected by painful conditions such as migraine and endometriosis.
Peer-Reviewed Articles
Assessing Research Gaps and Unmet Needs in Endometriosis
Although endometriosis affects nearly 10% of reproductive-age women, the disease remains underfunded and under-researched, according to an SWHR expert review in the American Journal of Obstetrics and Gynecology.
Commentaries
Gender Bias and the Ongoing Need to Acknowledge Women’s Pain
In this commentary for Practical Pain Management, SWHR President and CEO Amy M. Miller describes how sex and gender bias has its roots in the way medical research was conducted for centuries.
Event
Endometriosis Briefing: Erasing Stigma, Improving Patient Care
SWHR convened a congressional briefing featuring a moderated panel discussion that addressed the current state of endometriosis research, as well as policy considerations affecting a woman’s diagnosis, treatment, and access to quality care.
June 19, 2018 @ 12:00 pm - 1:30 pm EDT
Fact Sheets
Endometriosis Fact Sheet
Approximately 10% of reproductive-age women are living with endometriosis, a painful and chronic condition that can cause lesions, painful periods, and heavy bleeding. Endometriosis can negatively affect a woman's quality of life and productivity.
Policy Engagement
SWHR Recommends ICER Delay Report on Endometriosis Treatments
SWHR provided comments to the Institute for Clinical and Economic Review (ICER) on its draft report assessing new endometriosis therapies.
Event
Endometriosis: Shattering Misconceptions, Shaping the Future
SWHR hosted a public panel discussion to raise awareness around endometriosis and bring attention to issues related to a woman’s diagnosis, treatment, and access to care.
April 10, 2018 @ 3:30 pm - 5:00 pm EDT
Event
The State of Research and Care for Endometriosis
SWHR brought together a group of patients, clinicians, researchers and other relevant stakeholders for a daylong roundtable meeting to identify unmet needs and knowledge gaps in endometriosis, a condition that affects an estimated 10% of reproductive-age women and causes symptoms such as painful periods and heavy bleeding.
April 10, 2018
Policy Engagement
SWHR Urges ICER to Use Progressive Modeling to Assess Endometriosis Treatments
On February 1, 2018, SWHR submitted comments to the Institute for Clinical and Economic Review (ICER) before its assessment of the comparative clinical effectiveness of new treatments for endometriosis.

SWHR in the News


Program Director

Irene Aninye, PhD, Society for Women’s Health Research

Network Members

Ayman Al-Hendy, MD, PhD, University of Illinois-Chicago
Sawsan As-Sanie, MD,
University of Michigan
Sarah Dominguez, PT, MSPT, CLT, WCS, Foundational Concepts
Linda G. Griffith, PhD, Massachusetts Institute of Technology
Jhumka Gupta, PhD, George Mason University
Tara Hilton, The Yellow Cape
Stacey Missmer, ScD, Michigan State University

 

Abby Norman, patient advocate
Nkem Osian, MPH, White Dress Project
Lindsey Peters, patient advocate
Christine Sieberg, PhD, EdM, Boston Children’s Hospital
Hugh Taylor, MD, Yale University
Sateria Venable, Fibroid Foundation
Kedra Wallace, PhD, University of Mississippi Medical Center