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A woman said period pains caused her to faint and reschedule her wedding, but it took 25 years to find out it was due to endometriosis

Dec 11, 2021, 04:13 IST
Insider
Ada Ojeh-Teme (third from right in blue) sits with other women featured in the documentary.Linn Washington
  • Ada Ojeh-Teme passed out from period pain at age 11, but a doctor told her to just take Tylenol.
  • She lived with undiagnosed endometriosis, which has affected her fertility, for 25 years.
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Ada Ojeh-Teme's first period at age 11 didn't just announce itself with spotting in her underwear.

The Miami resident remembers being at school when suddenly she felt a "rush of pain" radiating from her uterus and consuming her entire body. "I don't understand. I'm so hot. What's happening?" Ojeh-Teme said she thought before passing out in the hallway.

"The doctor definitely belittled the pain," she said, just telling Ojeh-Teme to take Tylenol a few days before her period.

For 25 years, Ojeh-Teme tried to follow the advice — going from regular-strength Tylenol to eventually 800 milligram doses a few times a day. Still, the pain forced her to miss classes and even reschedule her wedding.

"It takes a toll," she said. "For someone to just dismiss you and say, 'Yeah I hear you're in pain, but just do this,' you start to think, 'Well, I guess this is a 'me problem.'"

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It wasn't until Ojeh-Teme underwent surgery to remove a fibroid in her 30s that she learned the pain, all along, had been endometriosis, a chronic condition that causes uterine-like tissue grows in the pelvic cavity outside the uterus.

The surgeon had found so many endometriosis lesions the surgery took more than six hours instead of the expected 30 minutes, Ojeh-Teme said. "When came out, his first comment to us was, 'How did you bear this for so long?'"

"Finally," Ojeh-Teme said she thought, "somebody sees me and somebody can understand that I'm not crazy after all."

Ojeh-Teme is one of five women of color featured in the upcoming MSNBC documentary "Stories We Tell: The Fertility Secret," produced by Today Show anchor Sheinelle Jones. Ojeh-Teme's story highlights how Black women's pain can be overlooked in the healthcare system.

Ojeh-Teme and her husband have been trying to have a baby for 10 years

Ada Ojeh-Teme and her husbandScreenshot/NBC

Ojeh-Teme didn't realize at first that her endometriosis and fibroid history could affect her fertility. "I've paid my dues," she thought. In reality, both conditions can reduce the chances of becoming pregnant, especially if they're widespread and in advanced stages.

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That lack of awareness is part of what inspired Jones to make the film, her first. "All of these women were saying they just wish they would have known sooner that they were going to run into trouble," she told Insider.

Ojeh-Teme and her husband are now in year 10 of trying to become pregnant. They've gone through at least eight IVF cycles, and have one embryo left.

"There's this misconception with infertility that you should always be heading in some direction, and it should end with a child," Ojeh-Teme said in the film. "I'm OK with where I am now, that this is what is for me."

Black women's pain is more likely to be dismissed

Being Black and being a woman can influence how your pain is treated in the healthcare system.

Ada Ojeh-Teme in the hospital for what turned out to be a 6- or 7-hour surgery.Screenshot/NBC/Ada Ojeh-Teme

One 2016 study found that about half of white medical students and residents endorsed false beliefs about biological differences between Black and white people, like that Black people's nerve endings are less sensitive and their skin is thicker. In turn, they rated Black patients' pain as lower and made less accurate treatment recommendations.

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Research has also shown that women report more severe levels of pain, more frequent pain, and longer periods of pain than men, but are treated for it less aggressively.

Rather than blame all doctors, Jones emphasizes the importance of advocating for yourself and finding a physician who listens. She remembers her grandfather, a physician, being "so gentle, so kind," she said. "We should seek those physicians out."

"Stories We Tell: The Fertility Secret" will air on MSNBC on Sunday, December 19 at 10 p.m. EST

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