One in 10 women in the U.S. has endometriosis

Published: June 21, 2018 | Updated: June 24, 2024

The crushing physical pain. The anguish of infertility. The grief of losing a uterus — and with it, the dream of carrying a baby. Lena Dunham, writer and actress for HBO’s “Girls,” chronicled her experience with severe endometriosis for Vogue magazine earlier this year.

Endometriosis isn’t talked about much. Yet, it’s all too common — about one in 10 women in the U.S. has it.

It’s a condition in which the tissue making up the lining of the uterus, called the endometrium, grows outside of the uterus.

Endometrial tissue can grow on the ovaries, fallopian tubes and abdominal organs. The growth is not cancerous but causes pain and can make it difficult for a woman to become pregnant. The severity of the pain is different for every woman.

For Dunham, the pain was intolerable. She had nine surgeries before choosing to have a hysterectomy at age 31. While hers was an extreme case, it sheds light on how serious endometriosis can be.

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Signs of endometriosis

• Pain in the lower abdomen or pelvis and/or lower back, mainly during periods
• Very painful menstrual cramps that worsen over time
• Chronic pain in the lower back and pelvis
• Pain during or after sex
• Intestinal pain
• Painful bowel movements or painful urination during menstrual periods
• Spotting or bleeding between menstrual periods
• Diarrhea, constipation, bloating or nausea, especially during menstruation
• Fatigue
• Infertility

How is it diagnosed?

Diagnosing endometriosis can involve steps. First, tell your health provider about your symptoms. She or he likely will do a pelvic exam and may order blood tests or an ultrasound, which uses sound waves to see cysts or lesions on the reproductive organs.

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After that, your doctor may recommend a minimally invasive surgical procedure called a laparoscopy to see inside the pelvis and determine the best treatment option. Sometimes, this is the only way to definitively diagnose endometriosis.

How is endometriosis treated?

Over-the-counter pain relievers such as ibuprofen or naproxen may help for mild symptoms. Your provider may prescribe stronger pain relievers if needed. For women who aren’t trying to get pregnant, hormone therapy may be prescribed.

Most birth control pills contain two hormones, estrogen and progestin, that decrease menstrual flow and can prevent overgrowth of the lining of the uterus. Other hormone therapies may be an option as well.

For some, medication management is not enough. A multidisciplinary approach for women with chronic long-term symptoms often will include a referral to a physical therapist with specialized training in the pelvic floor.

Surgery may be recommended if other treatments do not provide relief. The type of surgery depends on factors such as age, severity of symptoms and family planning. Surgery always is the last option after medication or hormone management does not work. Surgical approaches:

• Diagnostic laparoscopy – A minimally invasive procedure through small incisions on the abdomen to evaluate the pelvis. Biopsies of suspicious lesions may be taken to confirm endometriosis and guide next treatment steps.
• Laparoscopic excision – A minimally invasive procedure to remove all visible endometriosis lesions from the pelvis.
• Laparoscopic hysterectomy – For women who do not want to have children, hysterectomy may be recommended to remove the uterus, cervix and fallopian tubes. Removing the ovaries is an individualized decision between the patient and her doctor. A minimally invasive hysterectomy is performed through small incisions.

If you are having pain that is more than menstrual cramps or pain during other times of the month, it’s time to speak to your health provider.