Millions of women suffer with a painful disease that can make intimacy  uncomfortable. Now high-profile women are sharing their personal experiences to build awareness about endometriosis.

Amy Schumer, Mandy Moore and Daisy Ridley are just some of the stars who are speaking up.

Up to 10 percent of American women between the ages of 25 and 40 struggle with the condition that can make it difficult to get pregnant. Between 30 and 50 percent of women diagnosed with infertility have endometriosis.

The Problem

Endometrial tissue lines the inside of the uterus. With endometriosis, that same tissue is found outside the uterus. It invades the pelvis and fallopian tubes. Once there, it acts like it does inside the uterus. It breaks down and bleeds during each menstrual cycle. When the blood has nowhere to go, the areas surrounding the tissue becomes swollen. This causes scar tissue.

Looking for Answers

While the exact cause isn’t known, researchers believe there is a combination of factors that lead to the condition, including:

• A possible genetic links since it runs in families
• “Retrograde menstruation” in which menstrual blood backs up into the fallopian tubes and pelvis

You may have a higher risk if your:

• Mother or sister has the condition
• Periods began before the age of 11
• Monthly cycles are less than 27 days
• Periods are heavy and last more than seven days
• Menopause began at an older age

The most significant symptom of endometriosis is pain during intercourse and menstrual periods. Pain may be felt in the abdomen or lower back.

Diagnosis and Treatment

The most common way to confirm endometriosis is through a laparoscopy. During the procedure, a small incision is made in the abdomen. The surgeon uses a small instrument to look at the internal organs. There are a number of ways to treat it.

For pain, over-the-counter and prescription medications are often used. Hormone therapy may also help. In some cases, surgery could be recommended.

The link to infertility isn’t clear. In women with a mild case, doctors often recommend laparoscopy to remove excess tissue. When creating a treatment plan, you and your doctor will consider your age, pain level and fertility.

If you think you have endometriosis, talk with your doctor. Don’t assume heavy periods and abdominal pain are normal.

Sources: These 14 Stars Are Transcending the Pain of Endometriosis,  EverdayHealth, 2021; Endometriosis,  Mayo Clinic, 2019; Endometriosis,  John Hopkins Medicine, 2021.

Originally published 5/16/2017; Revised 2021