An estimated 6.5 million people in the United States have endometriosis, a painful condition in which the uterine lining spreads and grows outside of the uterus. But that statistic likely vastly underestimates the prevalence of endometriosis because its notoriously difficult to diagnose.

Many of the symptoms which range from painful, heavy periods and painful sex to gastrointestinal issues and intense fatigue are associated with other reproductive health problems , including ovarian cysts and pelvic inflammatory disease. In addition, the pain associated with endometriosis is often dismissed by doctors as normal period cramps.

The only surefire way to diagnose endometriosis is to get a laparoscopy, a tiny surgical procedure that can identify the size and location of endometriosis. But thats typically not the first test doctors recommend. Consequently, it can take years of inconclusive tests and misdiagnoses before the condition is properly diagnosed. In fact, endometriosis is so commonly misdiagnosed that the condition has picked up the nickname the missed disease .

Below, women diagnosed with endometriosis share what it physically feels like to live with the condition. They hope that their stories will encourage others experiencing symptoms to seek care and advocate for an accurate, timely diagnosis.

Extremely Painful, Heavy Periods

Jaime Henson, a nurse practitioner who was diagnosed with endometriosis at age 32, said her symptoms started when she was 14 18 years before she got an official diagnosis.

As a teenager, she had extremely painful and irregular periods. At one point, her period lasted over a month. I did not want to go out and do things because of the pain and nausea, Henson said.

Blaine Mallory, a woman diagnosed with endometriosis, said she lost a ton of blood over the course of seven to eight days when she had her period. While menstruating, she experienced extreme cramping and dizziness.

It was an iron deficiency brought on by my period, Mallory said. Like Henson, Mallorys period pain intensified over the years and became localized to her left ovary, which she later learned was covered in endometriosis.

People are often told that period pain is a normal part of menstruation, which causes many who experience intense or severe pelvic pain to believe that its just part of having a uterus. While its common to have some mild discomfort during menstruation, severe pain that impacts your quality of life or ability to function is not normal.

I did not know any different and how it was abnormal, Henson said.