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What is endometriosis? Nurse shares her story of being misdiagnosed

Jenneh Bockari-Rishe wants to help other women learn more about endometriosis and feel less alone.
/ Source: TODAY

Endometriosis — a painful condition that develops when tissue that lines the uterus grows outside of it — affects more than one in 10 American women. The cause is unknown and women can go years without being diagnosed.

But today, many are speaking up about the condition, including celebrities like Lena Dunham, Padma Lakshmi and Susan Sarandon, who have all shared their personal stories and helped bring more awareness.

Jenneh Bockari-Rishe, founder of the nonprofit Endometriosis Coalition, is also trying to elevate the conversation. The registered nurse knew nothing about the disease and spent years in pain, on disability, just trying to get better.

“We look like we're functioning and we're well,” Bockari-Rishe told TODAY. “(But) if you only knew what it took to have me standing in your face with a smile on, you'd think differently.”

Many other women can relate. Earlier this year, photographer Georgie Wileman started the #thisisendometriosis campaign on Instagram to help people learn about the disease and its treatments.

In 2014, Bockari-Rishe was driving to work when she felt an excruciating pain in the right upper side of her stomach: “I was listening to music, jamming one minute, and then the next, I can’t breathe,” she recalled.

The pain subsided but returned every month around her period. After about four months of the cyclical pain, Bockari-Rishe decided to see her gynecologist about it.

“She told me that based on where my pain was, it didn't make sense that it had anything to do with my period. And so I said OK and went on with my life,” Bockari-Rishe noted.

When the symptoms got worse, she sought another doctor’s opinion.

“She started asking me really pointed questions. Like, ‘Do you have bad pain days? And does your pain keep you from working? Do you have pain with sex?’” Bockari-Rishe recalled. “I told her yes to all of that, and she said to me, ‘Have you ever heard of endometriosis?’ I'm a nurse and I'd never heard that word before.”

The gynecologist prescribed birth control, but the pain continued to escalate. Bockari-Rishe’s good days were becoming less and less frequent, while her bad days were becoming worse.

She saw more doctors, tried different medications and had surgery, but nothing seemed to help. It got to the point where walking around her apartment left her short of breath. She had chronic constipation, nausea and other symptoms.

After four years, Bockari-Rishe took control of her illness and found a doctor who recommended excision surgery, which cuts the disease out.

“You start to get to a point where you feel like if this is the way that I have to live forever, I don't want to live,” she said. “So he gave me my hope back.”

What to know about endometriosis

It’s not possible to prevent endometriosis, but women can reduce their chances of developing it by lowering their estrogen levels, the Office on Women's Health at the U.S. Department of Health and Human Services noted.

Here’s the agency’s advice:

  • Talk to your doctor about hormonal birth control methods with lower doses of estrogen.
  • Exercise more than four hours a week, which can help lower body fat and decrease the amount of estrogen in the body.
  • Avoid large amounts of alcohol, which raises estrogen levels.
  • Avoid large amounts of drinks with caffeine, which can also raise estrogen levels.