Women Are Telling Reddit, Not Doctors, About Menopause

Nearly half the world's population experiences menopause, yet women aren’t talking about many of its emotional, cognitive and social impacts during medical appointments.

A new study out Tuesday in JAMA Network Open led by a University of Maryland researcher highlights these symptoms by comparing clinical notes that include menopause symptoms with the top Reddit posts in menopause forums. 

“We found that the more emotional and cognitive symptoms of menopause, like cognitive impairment, were around three to four times more likely to come up in online forums than at the doctor,” said Yulin Hswen, associate professor in the School of Public Health’s Department of Epidemiology and Biostatistics and the Artificial Intelligence Interdisciplinary Institute at Maryland (AIM). “These menopause symptoms are far more visible in women's own conversations than in traditional clinical records, and are not being captured by our healthcare system.” 

Hswen and her team used AI to screen more than 2 million electronic health records (EHRs) from the University of California, San Francisco and Reddit's top 999 all-time posts in menopause channels (r/menopause), identifying 646 clinical notes and 577 Reddit posts that contained menopause-related personal discussions for analysis.

In the Reddit posts, symptoms of cognitive impairment, emotional well-being and weight change were several times more likely to be discussed than in EHR clinical notes. For example, in about 20% of Reddit posts cognitive impairment came up, but those symptoms were noted in only 5% of clinic visits — almost a fourfold difference. 

Clinical notes more often mentioned physical symptoms such as hot flashes and night sweats, as well as hormone replacement therapy (HRT) treatment, lifestyle changes, sexual health, non-HRT treatment and herbal remedies. The data showed no statistically significant difference between Reddit posts and EHR notes for symptoms like sleep disturbances, skin and hair changes, and bone and joint health. 

Hswen notes that the absence of a symptom in the medical record should never be mistaken for the absence of the symptom itself. Emotional health, memory loss, anxiety and cognitive changes can have a profound impact on quality of life, work, relationships and daily functioning. 

“If we don't recognize and document these symptoms, we can't effectively study them or improve care,” she said. “This is why social forums can be so important to better understanding stigmatized or poorly understood conditions like perimenopause and menopause. Electronic health records tell us what medicine sees. Online communities tell us what patients live. We need both.”