Advertisement

Endometriosis by the Numbers

Important facts and figures surrounding endometriosis.

Medically reviewed in March 2022

woman in bed with stomach pain
1 / 6

Endometrium or endometrial lining is a layer of mucus membrane that normally grows on the inside of the uterus. During a menstrual cycle, this layer of tissue grows and thickens. During menstruation, this layer is shed. Endometriosis (commonly referred to as endo) is a condition where endometrium-like tissue grows outside the uterus and attaches to other pelvic organs. This tissue can attach almost anywhere in the pelvis—including the ovaries, bladder, intestines and inside the vagina. It can cause a range of symptoms, including inflammation, excess bleeding and severe pain.

The following slides look at some important numbers surrounding endo, including estimates of the number of women affected, the average age of diagnosis and the impact endo has on fertility.

creative careerwoman
2 / 6
Statistics

How many women have endometriosis? While exact numbers are hard to pin down, estimates range between 176 and 200 million women worldwide. In the United States, it is estimated that 1 in 10 women of childbearing age have endo (childbearing age refers to the years between puberty and menopause). While some estimates are higher and some are lower, healthcare experts agree that endo is common and that more women and healthcare providers need to be aware of the condition. They also believe that there are many women who have endo but are undiagnosed.

doctor explaining parts of uterus
3 / 6
Diagnosis

It can take an average of 8.6 years for a woman with endo to get an accurate diagnosis. While everyone’s experience is different, there are women with endo who spend years—and visit multiple healthcare providers—before getting an accurate diagnosis. This can have a major impact on a person’s quality of life when you consider the symptoms and potential consequences of endo—painful periods, fatigue, diarrhea, constipation, bloating, nausea, excessive bleeding during menstruation, pain when going to the bathroom, pain during sex, large cysts (which can rupture) and issues with fertility.

patient meeting with gynecologist
4 / 6
Age

Endo is most common among women in their 30s and 40s. However, this is not the only age group affected by the disease. Endo also affects teenagers, and research suggests that many women who are diagnosed with endo as adults first began experiencing symptoms in their teens. Endo has also been documented in girls 8 years old and younger, and there are reported cases of girls experiencing endo even before they have gotten their first period. Because of the long-term impacts that endo can have on quality of life and fertility, there is a major push for awareness about the condition among adolescent women and healthcare providers who treat adolescent women.

woman looking at pregnancy test
5 / 6
Fertility

Endometriosis can have a negative impact on a woman’s fertility, though the exact ways in which endo affects fertility are not well understood and healthcare researchers are likely years away from having an answer. A commonly cited statistic is that “30 to 40 percent” of women with endo experience difficulties with fertility, but it is important to understand that this figure is not consistent with all studies and should not be applied to all women with endo. It is also important to know that if you do become pregnant, endo will not harm the pregnancy.

support group meeting
6 / 6
Be Your Own Advocate

If you have endo or suspect you have endo, it is important to be your own advocate. Educate yourself about the condition, learn about the symptoms and treatment options, talk to your healthcare provider—and if necessary, find a new healthcare provider. While there is no cure for endo, there are a number of ways that endo can be treated, and a number of considerations to make when deciding on a treatment, including your specific symptoms, as well as if and when you want to have children. While there are still unanswered questions about endo, awareness about the condition is spreading thanks to the efforts of patients, healthcare providers, researchers and advocacy groups.

Featured Content

5 Surprisingly Painful and Heavy Truths About Endometriosis

article

5 Surprisingly Painful and Heavy Truths About Endometriosis
Here we go again: the tightening cramps, the aching lower back, the heavy flow. For the next several days, you won’t be able to face the world as your...
5 Common and Painful Myths About Endometriosis

article

5 Common and Painful Myths About Endometriosis
Living with endometriosis is hard enough—the severe abdominal cramps, heavy periods, and constant fatigue. Endometriosis is a condition where tissue s...
An Endometriosis Patient’s Guide to Sex

article

An Endometriosis Patient’s Guide to Sex
Endometriosis can have a negative impact on a person’s quality of life—especially when it comes to sex. Endo symptoms can make it a challenge to have ...
Ways to Advocate for Yourself at the Doctor

video

Ways to Advocate for Yourself at the Doctor
Many patients with endometriosis can spend years getting an accurate diagnosis. In this video, Kevin Windom, MD, offers advice for patients experienci...
What It Feels Like to Have Endometriosis

article

What It Feels Like to Have Endometriosis
Imagine how it’d feel to have 100 sharp knives piercing your abdomen. Bleeding heavily, not knowing when it’ll end. Feeling so fatigued that everyday ...