Journalist Lizzie O'Leary has been battling endometriosis symptoms since age 14, and only recently received an accurate diagnosis at 37. The severity of her symptoms have ultimately caused her to step down from a prestigious position at CNN. Lizzie's story of delayed diagnosis is one that is far too familiar. She recalls asking her gynecologist for 10 years if she had endometriosis and continually being told "no". Read her full story to learn more.
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"The first time I ever went to the ER with terrible abdominal pain, I was 14, and my doctors thought I had appendicitis," television journalist and former CNN correspondent Lizzie O'Leary told Cosmopolitan.com. "It would later turn out, when I had surgery at 35, that I had endometriosis."
It took 21 years for Lizzie, now 37, to finally be diagnosed with the gynecological condition, in which the endometrial cells that grow in the uterus (and are shed during periods) develop in other areas like the bladder or ovaries, causing chronic pain, internal bleeding, and, often, infertility. (Symptoms are wide-ranging, from severe abdominal pain to inability to get pregnant.)
Unfortunately, Lizzie's long road to diagnosis isn't rare. A staggering 176 million women around the world suffer from endometriosis, but according to the Endometriosis Foundation of America, "most" women affected by the condition battle symptoms for up to a full decade before getting diagnosed.
"I asked my gynecologist for 10 years: 'Do I have endometriosis?'" Lizzie recalled. "I was told, "No, no, no, no. You're young. You're fine.' A lot of damage was done to my body in that time."
From her teens to her early 30's, Lizzie battled nausea, abdominal pain, diarrhea, constipation, and exhaustion. She popped handfuls of Advil for period cramps... but then the symptoms would "sort of go away." After logging a half-dozen hospital visits, (doctors' misdiagnoses included ovarian cysts and hernia), Lizzie prepped for a 90-minute appendectomy in 2011, and woke up almost six hours later with no appendix and five inches of her intestines removed.
A surgeon had traced internal bleeding to large legions of endometrosis in her appendix and intestines, and flecks of endo in her abdominal cavity. ("I have a picture of the surgeon holding my intestine and it looks like a grape is blocking it," Lizzie adds.)
"I just thought, 'If only you people had listened to me for the last 20 years,'" Lizzie said. "For so long people have thought about endo as a fertility problem that affects women in their 30's, but there are tons of young women suffering through pain and no one is listening to them."
Post-surgery, she found a new gynecologist and promptly began taking hormones to stop her period and "trick" her body into containing the flow of estrogen that feeds her endometriosis. Concerned about "fertility stuff," she froze her eggs, (calling it "the best decision I ever made," and quipping, "I'm kind of an evangelist for it now.")
Right around that time, she met the man who is now her serious boyfriend.
"I figured if he couldn't handle that I was freezing my eggs, then he wasn't someone I wanted to date anyway," Lizzie said. Though she admits subsequent endo surgeries have impacted their relationship and sex life, she calls him "the world's most amazing boyfriend. He's a saint."
Lizzie thought her surgery had "fixed" her condition last January when she landed a prestigious job covering aviation and regulation at CNN in Washington. But soon she was again doing battle with her body.
"I would do a live shot and then run to the bathroom and throw up," she said. "One day I'd be on a gig at a flight school, doing great, and then the next day I was completely miserable and existing on Advil and Vicodin. Obviously I couldn't go on the air on Vicodin."
She took a leave of absence, but when her endo she wasn't getting any better, Lizzie stepped down. (She's currently doing freelance work for her former employer, NPR.)
"I got the amazing chance to be a CNN correspondent, but my body just wasn't capable of doing that," she said. "But it's also been this very strange gift. For so long, I defined myself as a journalist, and in the time when I've been sick, I've learned to define myself as a daughter and a sister and a girlfriend and an intellectual."
After another surgery, Lizzie is facing endo with continuous hormones and contraception (namely, an IUD), physical therapy for pelvic floor muscles, and acupuncture. She's spirited, heading to look into cutting-edge research at the Boston Center for Endometriosis, and even joking about her abdomen scars ("I'm a real treat in a bikini"). She considers herself lucky that her endometriosis hasn't impacted her fertility, and hopes to have children.
"What I want people to know is that it's okay to talk about it," she said, stressing the importance of early detection. "I think it's really hard if you are someone who pushes yourself and is accomplished... you feel you feel like you're a wuss to be complaining about this pain. Keep pushing. Keep asking questions."
