Endometriosis is a common, often painful condition in which the type of tissue that forms the lining of the uterus (the endometrium) is found outside the uterus. The most common symptom of endometriosis is chronic pelvic pain, especially just before and during the menstrual period. Endometriosis is also associated with mental health conditions, including depression and anxiety, and a reduced quality of life.

About one in 10 women of reproductive age experience endometriosis and it is most often diagnosed in women in their 30s and 40s, according to the American College of Obstetricians and Gynecologists. An estimated 40% of women with infertility have endometriosis.

A recent meta-analysis of studies of women with endometriosis found that more than two-thirds (68%) had mild or high psychological stress. The authors recommended that interdisciplinary treatment should not only address pain management and potential infertility, but also mental health support.

Potentially contributing to the psychological distress is the challenge many women face in even getting to a diagnosis. It is often years after symptoms begin before a diagnosis—delays of four to six years are common, according to recent studies. Among the reasons identified for the delays are patient issues such as stigma, embarrassment and uncertainty about normal versus abnormal symptoms, physician-centered causes such as normalization of symptoms, and lack of a non-invasive diagnostic test. Women’s significant chronic pain is often not understood, not taken seriously or dismissed as ‘typical menstrual pain’ by health care professionals.

One recent study found that women with endometriosis “often encountered the attitude that they exaggerated or imagined their symptoms or had low pain thresholds” and women were told their menstrual pain was normal. On the other hand, the study also found that women described other health care experiences where they felt acknowledged and understood. The constructive experiences “made the women’s self-esteem grow, as they felt confirmed and visible.”

The authors describe the importance of the encounters: “Since the disease affected the women’s whole existence and had consequences for essential parts of their lives, the experience of health care encounters was important. The responses they received during the encounters affected their own thoughts and perceptions about their bodies.” The authors of the meta-analysis mentioned above also noted that the attitude of the medical team acknowledging the patients’ psychological stress may positively affect their treatment. Being accepted and understood also likely had a positive impact on mental health.

While there is limited research on differences among women of different races/ethnicities, one review study found that compared with white women, black and Hispanic women were less, and Asian women were more likely to be diagnosed with endometriosis. Many questions remain such as the role of any bias in diagnosis, whether there are differences in the way women from different racial/ethnic groups experience or present symptoms of endometriosis, and any difference in mental health related impacts.

Another recent meta-analysis links the chronic pelvic pain associated with endometriosis with increased experience of depression. Writing about the study Ruta Nonacs, M.D., Ph.D., a psychiatrist with Massachusetts General Hospital Center for Women’s Mental Health, notes that “without a doubt the relationship between endometriosis and depression is a complicated one.” She suggests women with endometriosis chronic pain should be checked for depression and that both need to be treated simultaneously to be effective.

More information

• American College of Obstetricians and Gynecologists. Endometriosis: Frequently Asked Questions
• Endometriosis Foundation of America
• Endometriosis Research Center
• Endometriosis Association