New Study Looks At Symptoms Experienced By Women With Endometriosis

A new study published in the Journal of Human Reproduction looked at characterizing endometriosis and adenomyosis symptom clusters and their impact on quality of life.

Endometriosis affects around 10% of women of reproductive age, yet diagnosis is delayed by 4 to 11 years on average. A lot of that delay comes down to symptoms not being recognized as connected to the disease, especially when they show up as digestive, neurological, or psychological complaints rather than pelvic pain. 

“We wanted to use a large population dataset to map out that symptom diversity properly, rather than relying on surgical or imaging-based classifications alone, which are invasive and expert-dependent and many patients do not have easy access to in the first place,” Dr. Dora Koller told us. “Our study looks at endometriosis, a chronic condition where tissue similar to the lining of the uterus grows outside it, causing systemic inflammation and pain. Traditionally it has been classified mainly by the location and extent of lesions, but that tells us surprisingly little about what patients actually experience day to day. We wanted to find out whether there are distinct groups of patients defined by their symptoms, not just pelvic pain, but also others like migraines anxiety, depression, and digestive issues, and whether those symptom groups differ in how the disease affects their quality of life.”

The researchers expected to find a group with severe, wide-ranging symptoms and a group with milder symptoms. What the research team was not sure they would find, but suspected might be there, was a group where non-classical symptoms like migraine, anxiety, and depression dominated, separate from the more ‘typical’ pelvic pain presentation. That is a pattern that has been found in smaller-scale studies and clinical experience, but had not been clearly demonstrated in a large, data-driven analysis.

The research team used data from the All of Us Research Program, one of the largest population-based biobanks in the world, which gave them access to over 22,000 women with endometriosis, combining electronic health records with patient-reported survey data. 

“We looked at 19 symptoms and related conditions, chronic pelvic pain, migraine, depression, anxiety, digestive symptoms, and others and used a statistical technique called latent class analysis to let the data itself reveal natural groupings of patients, rather than imposing categories in advance,” Dr. Koller told us. “We then tested how those groups are related to quality-of-life outcomes.”

The study results showed four distinct symptom profiles among women of reproductive age: one with a high overall symptom burden (severe pain, digestive symptoms, and mood disturbances), one with moderate symptoms centered on pain and emotional health, one dominated by psychological and neurological symptoms like anxiety, depression, and migraine, and one with a low symptom burden. 

The research team also looked separately at women who had adenomyosis, a closely related condition, alongside endometriosis, and found their symptom profiles were considerably more severe, with almost none falling into the low-symptom group. Across the board, the higher-burden profiles were linked to worse quality of life, including more pain, worse mental health, and more difficulty with daily activities and social life.

“Some of the results confirmed what we expected, but the psychological/neurological profile really stood out to us,” Dr. Koller told us. “Nearly 30% of patients fell into that group. It is a reminder that endometriosis does not always announce itself through pelvic pain. Sometimes the first symptoms a patient brings to a doctor are anxiety, migraine, or depression, and those get treated as unrelated issues, or dismissed as “all in her head,” when they may actually be part of the same underlying condition.”

Dr. Koller believes the study results point to the need for a more integrated way of thinking about endometriosis, recognizing that a patient’s migraines, gut symptoms, or mental health struggles might be connected to their pelvic pain rather than separate problems to be treated by different specialists in isolation. 

“Practically, that could mean screening for endometriosis earlier in women presenting with these non-classical symptoms, particularly in primary care, and building more personalized, multidisciplinary care around a patient’s actual symptom profile rather than just their lesion type,” Dr. Koller told us. “This is ultimately about closing the gap between how the disease has traditionally been classified and how patients actually live with it. Recognizing the full range of ways endometriosis can present is a real step toward earlier diagnosis and better, more personalized care and that matters for millions of women who currently spend years searching for an explanation for symptoms that are being assessed one at a time instead of as a whole.”

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