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TikTok Videos Detail Patient Pain, Infertility with Endometriosis

Understanding concerns can help improve patient-provider communication gap



Stephanie Lopez
Stephanie Lopez
919-724-5934 Email

DURHAM, N.C. – 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, M.D., an assistant professor, and Jenny Wu, M.D., a resident, both in the Department of Obstetrics and Gynecology at Duke University School of Medicine, led the study published June 5 in BJOG: An International Journal of Obstetrics & Gynaecology.

“TikTok is a growing space for reproductive health awareness and advocacy,” 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 healthcare 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.

The study received funding support from the National Institute of Child Health and Human Development of the U.S. National Institutes of Health (K12HD103083).

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