Lessons from the 2021 Endometriosis In America Survey: Symptoms, Diagnoses, and More

Endometriosis is a painful condition that can have many symptoms. It can be a grueling process to get a diagnosis and find treatments that help symptoms.

In our 2021 Endometriosis In America survey, we explored common symptoms, the diagnosis experience, and other health conditions people with endometriosis may face. More than 1,000 people with endometriosis completed the survey and shared insights on living with the condition.

Common endometriosis symptoms

From irregular periods to bloating, a variety of symptoms can plague those living with endometriosis. The most common symptom among survey respondents was fatigue, feeling tired, or a lack of energy. Nearly every respondent – 97 percent – reported fatigue as an endometriosis symptom.

More than 90 percent of respondents have also experienced abdominal pain, pelvic pain unrelated to periods, painful periods, and bloating. Other common symptoms respondents have experienced include:

• 84 percent have back/flank pain
• 82 percent have ovulation pain
• 77 percent have brain fog
• 72 percent have hip pain

Many respondents say endometriosis symptoms are a constant presence in their lives.

• 45 percent have never experienced a time with few or no symptoms
• 45 percent have symptoms every day

Pain is common and frequent for most

Pain frequency with endometriosis is high. Forty percent of respondents say they live with pain every day, while 30 percent say they have pain a few times a week. More than 60 percent of respondents say they have moderate to high pain in a typical month.

More than 85 percent of respondents report abdominal pain, pelvic pain, and cramping not related to periods in the past 6 months.

Other types of pain experienced in the past 6 months include:

• Pain with bowel movements and urination
• Painful periods
• Hip pain
• Leg pain
• Ovulation pain
• Pain during sex

Most have other health conditions too

Nearly all survey respondents – 97 percent – shared that they live with other health conditions along with endometriosis. The most common is anxiety. Other common health conditions reported include:

• 55 percent have allergies
• 53 percent have depression
• 43 percent have migraine

While less common, some respondents say they also live with chronic pain, irritable bowel syndrome, asthma, and insomnia.

The path to diagnosis is not easy

Seeking an endometriosis diagnosis can be frustrating, exhausting, even traumatic. Respondents describe the process as stressful, difficult, confusing, and hopeless. While the process can be discouraging, 85 percent say they have been formally diagnosed, with 26 percent getting their diagnosis within the past 2 years.

Types of diagnoses

Of those formally diagnosed, just over 50 percent have endometriomas and/or deep infiltrative endometriosis. Another 36 percent currently have stage IV or severe endometriosis.

• 51 percent have endometriomas or chocolate cysts
• 51 percent have deep infiltrative endometriosis
• 31 percent have adenomyosis
• 36 percent have stage IV endometriosis
• 27 percent are not sure of their current stage

Could endometriosis be an autoimmune disorder?

Endometriosis is a chronic and painful systemic disease. While it is not currently classified as such, 37 percent say they consider endometriosis to be an autoimmune disorder. What is the rationale? Respondents say endometriosis is autoimmune because the body is attacking or fighting itself. Other reasons include:

• It impacts the immune system
• A doctor said endometriosis is related to their other autoimmune disorders
• Endometriosis can cause autoimmune flare-ups

The 2021 Endometriosis In America survey was conducted online from February through March 2021. The survey was completed by 1,027 people.