Study: Endometriosis affects the entire body, not just the pelvis

Endometriosis is associated with a wide range of symptoms extending far beyond pelvic pain, including migraines, digestive disorders, anxiety, depression and chronic fatigue, according to a new study led by researchers at the Sant Pau Research Institute (IR Sant Pau) in Spain. The findings, published in Human Reproduction, suggest the disease should be viewed as a complex systemic condition rather than solely a gynecological disorder.

Analyzing clinical data from more than 22,000 women enrolled in the All of Us Research Program, researchers identified distinct symptom patterns that help explain why endometriosis presents so differently from one patient to another and why diagnosis is frequently delayed.

Endometriosis affects around 10% of women of reproductive age, yet diagnosis often takes four to eleven years after symptoms first appear. Researchers say this delay is largely due to the disease's diverse manifestations, which are often treated as unrelated conditions.

The team evaluated 19 symptoms and commonly associated disorders, including chronic pelvic pain, abdominal pain, gastrointestinal complaints, migraines, anxiety, depression, infertility, chronic fatigue and irritable bowel syndrome.

Among premenopausal women, four major symptom profiles emerged. Nearly one in five patients experienced the most severe disease burden, combining intense pain with gastrointestinal symptoms and psychological distress. The largest group had moderate symptoms, primarily involving pain and emotional health. Another large subgroup was dominated by neurological and psychological symptoms—including migraines, anxiety and depression—while about one-fifth of women experienced relatively mild symptoms.

"Our findings show that endometriosis does not always present in the way clinicians traditionally expect," said Dr. Dora Koller, senior author of the study and researcher with the Women's Health and Perinatal Research Group at IR Sant Pau. "If we focus only on pelvic or menstrual pain, many patients may remain undiagnosed."

Researchers believe these symptom profiles help explain why many women spend years seeking answers. Patients may initially consult neurologists for migraines, gastroenterologists for digestive problems or mental health specialists for anxiety and depression, without recognizing that all of these symptoms may stem from the same underlying disease.

The study also found that women with both endometriosis and adenomyosis experienced significantly more severe disease. More than half of these patients fell into the highest-burden symptom groups, characterized by severe pain, gastrointestinal problems and emotional distress, while patients with mild symptoms were almost absent from this subgroup.

Beyond symptom patterns, the researchers found that women with more severe forms of the disease reported substantially poorer physical and mental health, greater limitations in daily activities, reduced social participation and lower overall quality of life.

The authors conclude that assessing endometriosis based solely on the location of lesions is insufficient. Instead, recognizing individual symptom profiles could improve earlier diagnosis, facilitate referral to appropriate specialists and support more personalized treatment strategies.

The study was published in the journal Human Reproduction.

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