Endometriosis affects one in 10 people with a uterus who are of reproductive age. This condition occurs when tissue similar to the endometrium—the inner lining of the uterus—grows on organs outside of the uterus, causing severe pain that impacts patients’ quality of life.

Read on to learn more about endometriosis: What it is, how it’s diagnosed and treated, where patients can find support, and more.

What is endometriosis, and what areas of the body can it affect?

The endometrium is the tissue that lines the inside of the uterus and sheds during each menstrual cycle. Endometriosis occurs when endometrial-like tissue grows outside of the uterus.

This tissue can typically grow in the pelvic region and may affect the outside of the uterus, fallopian tubes, ovaries, vagina, bladder, intestines, and rectum. It has also been observed outside of the pelvis on the lungs, spleen, liver, and brain.

What are the symptoms?

Symptoms may include pelvic pain and cramping before or during menstrual periods, heavy menstrual bleeding, bleeding or spotting between periods, pain with bowel movements or urination, pain during or after sex or orgasm, fatigue, nausea, bloating, and infertility.

The pain associated with this condition has been linked to depression, anxiety, and eating disorders. A meta-analysis published in 2019 found that more than two-thirds of patients with endometriosis report psychological stress due to their symptoms.

Who is at risk?

Endometriosis most commonly occurs in people with a uterus between the ages of 25 and 40, but it can also affect pre-pubescent and post-menopausal people. In rare cases, it has been documented in cisgender men.

Scientists still don’t know what causes the endometrial-like tissue to grow, but research shows that people with a family history of endometriosis are at a higher risk of developing the condition. Other risk factors include early menstruation, short menstrual cycles, high estrogen, low body mass, and starting menopause at an older age.

There is no known way to prevent endometriosis.

How does endometriosis affect fertility?

Up to 50 percent of people with endometriosis may struggle to get pregnant. Adhesions and scarring on the fallopian tubes and ovaries as well as changes in hormones and egg quality can contribute to infertility.

Additionally, when patients with this condition are able to conceive, they may face an increased risk of pregnancy complications and adverse pregnancy outcomes.

Treating endometriosis, taking fertility medications, and using assistive reproductive technology like in vitro fertilization can improve fertility outcomes.

How is endometriosis diagnosed, and what challenges do patients face when seeking a diagnosis?

A doctor may perform a pelvic exam and request an ultrasound or MRI. These exams and tests help identify cysts or other unusual tissue that may indicate endometriosis.

Endometriosis can only be confirmed through a surgical laparoscopy (although less-invasive diagnostic tests are currently in development). During the procedure, a surgeon makes a small cut in the patient’s abdomen and inserts a thin scope to check for endometrial-like tissue outside of the uterus. The surgeon may take a biopsy, or a small sample, and send it to a lab.

It takes an average of 10 years for patients to be properly diagnosed with endometriosis. A 2023 U.K. study found that stigma around menstrual health, the normalization of menstrual pain, and a lack of medical training about the condition contribute to delayed diagnoses. Patients also report that health care providers dismiss their pain and attribute their symptoms to psychological factors.

Additionally, endometriosis has typically been studied among white, cisgender populations. Data on the prevalence of endometriosis among people of color and transgender people is limited, so patients in those communities face additional barriers to care.

What treatment options are available?

Treatment for endometriosis depends on its severity. Management options include:

• Over-the-counter pain medication to alleviate pelvic pain
• Hormonal birth control to facilitate lighter, less painful periods
• Hormonal medications such as gonadotropin-releasing hormone (GnRH) or danazol, which stop the production of hormones that cause menstruation
• Progestin therapy, which may stop the growth of endometriosis tissue
• Aromatase inhibitors, which reduce estrogen

In some cases, a doctor may perform a laparoscopic surgery to remove endometrial-like tissue.

Depending on the severity of the patient’s symptoms and scar tissue, some doctors may also recommend a hysterectomy, or the removal of the uterus, to alleviate symptoms. Doctors may also recommend removing the patient’s ovaries, inducing early menopause to potentially improve pain.

Where can people living with endometriosis find support?

Given the documented mental health impacts of endometriosis, patients with this condition may benefit from therapy, as well as support from others living with the same symptoms. Some peer support organizations include:

• Endometriosis Coalition Patient Support Group (virtual)
• MyEndometriosisTeam (virtual)
• Endo Black, Inc. (Washington, D.C.)
• endoQueer (virtual)

For more information, talk to your health care provider.

This article first appeared on Public Good News and is republished here under a Creative Commons license.