TikTok Videos Detail Patient Pain, Infertility with Endometriosis
By Stephanie Lopez
With over 301 million views, popular TikTok videos related to endometriosis focus on patient experiences involving chronic pain and infertility, specifically in-vitro fertilization.
The videos, analyzed by a team of Duke Health researchers, provide a unique window into the real-life experiences of patients with the chronic condition, in which tissue similar to the lining of the uterus grows outside the uterus. Endometriosis is often stigmatized and underdiagnosed — patients often suffer for years before getting a diagnosis — so the social media conversations can be instructive to both patients and doctors.
Duke Health researchers Arleen Song, MD, MPH, minimally invasive gynecologic surgeon, and resident Jenny Wu, MD, led the study published June 5, 2023 in BJOG: An International Journal of Obstetrics & Gynaecology. “TikTok is a growing space for reproductive health awareness and advocacy,” Dr. Wu said. “We wanted to understand what people were saying about endometriosis, which occurs in about 10 percent of women during their reproductive years. We found that patients with the disease used the platform to share their diagnosis, the way their symptoms have impacted their lives and find community.”
The researchers used a web application to download and compile information on the top 100 most-liked TikTok videos tagged #endometriosis. Of the videos analyzed, 83% of content creators were patients and 17% were health care professionals.
A majority of videos highlighted a patient’s experience with chronic pain and infertility. A quarter of videos highlighted distrust of health care and 15% highlighted a perceived delay in diagnosis. Videos discussing hormonal treatments were negative or ambiguous in tone.
“This study highlights the symptoms and stories of many of my patients,” Song said. “We found that patients were looking for solutions outside established health care and there’s a distrust of hormonal treatment. This is an opportunity for us to understand this communication gap and to improve our care of these patients.”
Additional authors of the study include Melissa Greene, Allison Bickett and Jonas Swartz, MD, MPH. The study received funding support from the National Institute of Child Health and Human Development of the U.S. National Institutes of Health (K12HD103083).
National Forum on Best Practices to Address Health Misinformation: Healthcare Readiness and Response
In November 2023, the Duke University School of Medicine co-hosted a National Forum on Best Practices to Address Health Misinformation: Healthcare Readiness and Response. Other co-hosts were RTI International, an independent, nonprofit organization dedicated to conducting research that improves the human condition, and the Coalition for Trust in Health and Science, an organization with over 70 groups working together to advance trust and factual science-based decision making. The Duke Clinical and Translational Science Institute, which houses the Duke Program on Medical Misinformation, also played an important role in organizing the event. The event was designed to highlight innovations and provides space for attendees to help develop best practices and interventions for health care organizations and their partners to address medical misinformation.
Maternal-Fetal Medicine
Samuel Bauer MD, MBA, Selected for SMFM Development Committee
Dr. Bauer was selected to join the Foundation for the Society for Maternal-Fetal Medicine (SMFM) Development Committee (three-year term) and to serve on American College of Obstetricians and Gynecologists (ACOG) Committee on Clinical Practice Guidelines for Obstetrics (2024-2025).
Geeta Swamy, MD, Duke Centennial Trailblazer
A professor of obstetrics and gynecology in the Division of Maternal-Fetal Medicine, Dr. Swamy (Maternal-Fetal Medicine Fellowship Class of 2004), is a member of the National Vaccine Advisory Committee and a consultant to the World Health Organization, where her expertise has advanced national and international efforts to evaluate the safety and efficacy of vaccines in pregnant women. During the pandemic shutdown, she appeared on The Today Show to discuss the COVID-19 vaccine. She oversees the Duke Office of Research Initiatives, Duke Office of Scientific Integrity, Office of Research Administration, Office of Research Contracts and the Duke Health IRB.
Urogynecology
Cindy Amundsen, MD, Honored for 20+ Years of Leadership
Dr. Amundsen, who led the department’s Urogynecology Fellowship for more than 20 years, was celebrated at the 2023 American Urogynecologic Society (AUGS) Pelvic Floor Disorders Week. Amie Kawasaki, MD, current fellowship director, and Cassandra Kisby, MD, MS, associate fellowship director, announced the newly created Dr. Cindy Amundsen Fellow Travel Fund, created in Dr. Amundsen’s honor (when making donations with this link, please note "In honor of Dr. Amundsen" so that funds are directed there).
Dr. Amundsen’s career has been recognized nationally and internationally for her groundbreaking work in urogynecology. In 2017, the National Association for Continence honored her at the AUGS annual meeting with the Rodney Appell Continence Care Champion Award. The award is the among the most prestigious recognitions in the field of continence care, presented to those whose distinguished careers and outstanding contributions in research, clinical practice and patient education have made them role models for others in the discipline. She has been commended for success with treating patients who often do not respond to first- or second-line therapies. Her research has focused on applying rigorous methods to test tools used for evaluation of lower urinary tract symptoms, studying safer surgical approaches and testing novel therapies for lower urinary tract dysfunction, including urinary incontinence.
For more than two decades, she has mentored surgeon/scientists and has been an advocate for patient education and awareness about bladder health at every stage of life, encouraging her patients to maintain good bladder health and to seek expert advice when problems arise.
Dr. Amundsen, the Roy T. Parker, MD, Distinguished Professor of Obstetrics and Gynecology, led the first multicenter trial comparing Botox therapy to InterStim therapy for women with refractory urgency urinary incontinence. The results of this study were published in the Journal of the American Medical Association.
In 2021, Dr. Amundsen was the recipient of the Career Mentoring Award in Clinical/Population Health Science from the Duke University School of Medicine. Winners of this award demonstrate excellence in numerous aspects of mentoring, including accomplishments of individual mentees, programs implemented by the mentor or by exceptional creativity in mentoring.
Pediatric and Adolescent Gynecology
Expanding Pediatric and Adolescent Gynecologic Care
To enhance the expertise and patient care options for children and adolescents, Duke Health’s gynecology team recently welcomed Tara Streich-Tilles, MD, MPH. Dr. Streich-Tilles brings specialized training in the medical and surgical care of children, adolescents and young adults with gynecologic concerns, and comprehensive, inclusive and impactful care to the community.
Reproductive Sciences
Faculty Recognized by Duke School of Medicine Dean in State of the School Address
Friederike L. Jayes, DVM, PhD, was recognized at the Duke University School of Medicine’s State of the School Address by Dean Mary Klotman, MD, for her work to develop a more convenient, less invasive treatment for uterine fibroids — one of the most common and under-studied issues in women’s health. The research is in partnership with North Carolina Central University colleague Darlene Taylor, PhD.
They were spotlighted and recognized for their research partnership to improve women’s health. Their fibroid injection research is now one of the published case studies that are highlighted/explained under the framework of the Translational Science Benefits Model (TSBM) by the Duke Clinical and Translational Science Institute and Washington University St. Louis (the home of the TSBM).
Women’s Community and Population Health
Jonas Swartz, MD, MPH, Presented with Dogwood Award
Dr. Swartz, medical director of Family Planning at Duke Health, was awarded a 2023 Dogwood Award by North Carolina Attorney General Josh Stein. These awards are given out annually to recognize people who are working to improve the health, safety and well-being of their fellow North Carolinians. Dr. Swartz was among 34 recipients selected for the recognition. He has been a staunch supporter of women’s reproductive rights and has played an integral role in the Duke Reproductive Health Equity and Advocacy Mobilization (DREAM) Team to advocate for policies that preserve and enhance women’s health care access.
Beverly Gray, MD, Receives Leonard Tow Humanism Award
The Leonard Tow Humanism in Medicine Award is presented by the Arnold P. Gold Foundation. This honor is awarded to faculty members who demonstrate outstanding compassion in the delivery of care; respect for patients, their families and health care colleagues; and demonstrated clinical excellence. Dr. Gray was also recently featured in Duke University School of Medicine Dean Mary Klotman, MD’s Friday Message on the topic of reproductive rights and women’s health.
Gynecologic Oncology
Duke Ranked in Top 50 Recruiting Sites for Women’s Cancer Clinical Trials
Duke’s University Medical Center is ranked number 20 among top recruiting sites for clinical trials by the Gynecologic Oncology Group (GOG) Foundation/NRG Oncology. NRG Oncology is a National Cancer Institute National Clinical Trials Network (NCTN) group focused on improving outcomes for adults with cancer through multi-center clinical research. It brings together the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG) and the GOG — each recognized internationally as a research leader.
Promising Gyn Onc Cancer Regimens Presented
At the 2023 International Gynecologic Cancer Society Annual Global Meeting in Seoul, South Korea, Duke Cancer Institute gynecologic oncologist Angeles Alvarez Secord, MD, MHSc (Residency Class of 1998, Fellowship Class of 2001), presented real-word data from the DCI Endometrial Cancer Molecularly Target Therapy (EMCT2) Consortium regarding pembrolizumab and lenvatinib for endometrial cancer patients. “While the FDA-approved combination of pembrolizumab and lenvatinib regimen improved survival compared to standard chemotherapy for endometrial cancer patients, the side effects are significant,” said Dr. Secord.
Feature: Dr. Secord, SGO President
Dr. Secord served as the 55th president of the Society of Gynecologic Oncology (SGO) from March 2023-March 2024. Her theme, “The Power of Shared Purpose: Transforming Gynecologic Cancer Care,” focused on synergistically leveraging partnerships to prevent, overcome and eradicate gynecologic cancers. She also worked closely with the Foundation for Women’s Cancer (FWC) and the Institute of Surgical Excellence to organize the Celebration of Champions fundraiser (which raised over $155,000 for gynecologic cancer research and awareness). She is the recipient of the 2022 SGO Best Clinical Science Award for the abstract titled “Genomic Alterations, Molecularly Targeted Therapy and Race: Real World Data from the Endometrial Cancer Molecularly Targeted Therapy Consortium.” In the fall of 2023, she was honored by the American Association of Obstetricians and Gynecologists Foundation (AAOGF) for her exceptional service and was recognized as the outgoing chair of the Scholar Committee. She served on the AAOGF Board of Trustees since 2015 and served two terms as chair of the Scholar Committee.
Inaugural Andrew Berchuck, MD, Gynecologic Oncology Endowed Lecture Presented
The inaugural lecture took place on May 31, 2023. Daniel Clarke-Pearson, MD, former chief of the Division of Gynecologic Oncology in the Duke Department of Ob/Gyn, presented a historical and moving talk, with many anecdotes about the progress of the Division of Gynecologic Oncology, titled “Reflections on Gynecologic Oncology at Duke: Lessons Learned.” Save the date for the 2024 lecture: Wednesday, May 15.
Learn more about our endowed lectures
Faculty at National Cancer Prevention Forums
Gynecologic oncologist Haley Moss, MD, MBA (Gynecologic Oncology Fellowship Class of 2019), represented the Department of Veterans Affairs and Duke University at the Biden Cancer Moonshot’s White House Cervical Cancer Forum at the White House on Jan. 25. The forum is working on mobilizing a national effort to eradicate cervical cancer through collaborations between the federal government, academic medical centers, nonprofit organizations and industry. Dr. Moss, who serves as director of the U.S. Department of Veterans Affairs’ Breast and Gynecologic Cancer System of Excellence, also was highlighted in the Society for Gynecologic Oncology’s Women’s Cancer News in a blog titled “Serving Veterans with Gynecologic Cancer: An Update on Available Programs and New Partnerships.”
Feature: American Cancer Society National Roundtable on Cervical Cancer
Dr. Moss and Brittany Davidson, MD (Gynecologic Oncology Fellowship Class of 2016), participated in the American Cancer Society national roundtable on cervical cancer in October 2023. The annual meeting reinforced the importance of sharing personal stories and ending fear, shame and guilt felt by patients with cervical cancer and was a forum for discussing the latest research on HPV vaccination and primary HPV screening.
SGO 2023-2024 Honors & Awards
At the Society of Gynecologic Oncology (SGO) Annual Meeting on Women’s Cancer in March 2024, Gynecologic Oncology fellow Pamela Peters, MD, was honored as the recipient of the SGO 2023 Best Clinical Science Award for her abstract “Turning Up the Heat: Oncolytic Virus MEM-288 Induces Anti-tumoral Immune Response in Pre-Clinical Models of High Grade Serous Ovarian Cancer.”
Faculty Emma Rossi, MD, received the Surgical Mentor Award.