What It's Like Living With Endometriosis

June 9, 2015 • By Dr. Nancy C. Lee, Deputy Assistant Secretary for Health — Women's Health and Director, Office on Women's Health

"The pain got worse and worse. Eventually it was unbearable… Sex was impossible. I felt exhausted all the time. There were many times when I couldn't get out of bed."

More than 5 million American women are living with endometriosis, and pain is the most common symptom. The level of pain each woman experiences is different. While some women have little or no pain, others face similar physical and emotional challenges to what Heather Roppolo-Guidone describes.

"It affects every single aspect of your life: relationships, physical and emotional health, work, school, social engagements, and just normal day-to-day life," says Heather.

What causes the pain? For a woman with endometriosis, the tissue that lines the inside of her uterus has grown outside of her uterus on other organs and structures, such as her ovaries or fallopian tubes. These growths bleed the same way the lining of her uterus does when she has her period every month. This can cause swelling and pain because the tissue grows and bleeds in areas where it can't easily get out of her body.

The pain isn't just "bad period cramps" or something an over-the-counter pain reliever can help. A woman with endometriosis can have different kinds of pain. She may experience:

Painful cramps that can get worse over time
Long-term pain in her lower back and pelvis
Deep pain during or after sex
Intestinal pain

Plus, she may experience bloating, nausea, diarrhea, painful bowel movements, and pain when urinating, especially while she has her period. Heather says, "I lived in fear of my symptoms. Endometriosis can really start to control your life."

In some women, endometriosis also affects if they can or how difficult it is to get pregnant. About half of women with infertility are affected by endometriosis. For Heather, it took six years to get pregnant.

If Heather's story sounds familiar, please read our fact sheet onendometriosis. It offers more detailed information on symptoms, how endometriosis is diagnosed, and treatment options. And if you have additional questions about resources and information on endometriosis, call our helpline at 1-800-996-9442.