When Abby Norman was a sophomore studying dance at Sarah Lawrence College, she repeatedly ended up in the emergency room with severe pelvic pain. Each time, the doctors proposed the same explanations: a UTI, STIs, pregnancy (despite the fact that she’d never had sex), anxiety. As a 19-year-old, she didn’t think it was her place to question them. Yet she grew so ill, she couldn’t go to class. With little help from doctors and no parents to turn to—she’d been emancipated at age 16—she dropped out of school and went home to Maine, where she floated between friends’ couches, growing sicker and sicker.
It wasn’t for several months that she finally had a laparoscopy, a form of surgery where doctors look inside the abdominal organs. And on her left fallopian tube, they found endometriosis—a growth of tissue resembling the uterine lining outside the uterus. This condition, estimated to affect one in 10 women of reproductive age, causes pelvic pain that can make menstruation, sex and other activities excruciating.
On average, it takes 10 years for endometriosis to get diagnosed, largely because its symptoms often get brushed off as “normal” parts of womanhood. In a 2016 Quartz article that recently resurfaced on several women’s sites, John Guillebaud, professor of reproductive health at University College London, says period cramps can be “almost as bad as having a heart attack.” While such severe pain may be common, though, it’s not normal. In fact, a significant portion of severe period pains are actually undiagnosed endometriosis.
Because it’s so normalized, it didn’t initially occur to Norman to even tell doctors she’d always suffered from unbearable period cramps. She also didn’t think much of having six months of excruciatingly painful sex. She’d been warned that sex would hurt like hell the first few times and take several months to become enjoyable. Still, she remembers thinking, “Why would anybody have sex if this is what it’s supposed to feel like?”
“I’m in pain. I can’t eat. I can’t have sex. But the consensus was I have abdominal pain because I was anxious.”
Even after the doctors found endometriosis so bad that it pushed Norman’s ovary out of alignment, they didn’t remove it out of fear that it would damage her fertility. But if they’d spoken to her, they would have known she didn’t want kids—a fact she eventually learned to hide. Doctors weren’t as determined to treat her endometriosis when they didn’t think she needed the treatment to start a family, she says. “The fact that I was in excruciating pain and couldn’t eat and couldn’t enjoy sex wasn’t enough.”
“I spent the first month after surgery not knowing how I was sicker than I was after I’d started,” she remembers. Yet somehow, despite the evidence on her ovary, doctors still told her it was in her head. Until, that is, she brought her boyfriend to appointments. Once he testified that she could not have sex and it affected him, they began to listen.
In addition to the pain in her pelvis, Norman also began feeling a distinct pain around her appendix. She ended up back in the emergency room several times, where doctors described her as “anxious and tearful.”
“No shit. I’m in pain. I can’t eat. I can’t have sex,” she remembers thinking. “But the consensus was I have abdominal pain because I was anxious. I’m like, ‘No, I’m anxious because I have abdominal pain.’”
One day, she noticed a posting for a job in the hospital office. Since she had to work to get health insurance, she applied and got it. During her lunch breaks, she went to the library and read medical journals, desperate to understand her condition. She learned that, as she suspected, endometriosis could spread outside the reproductive system, including to the appendix, and although rare, an appendix infection could last for months.
When she proposed this theory to the doctor, he was skeptical but agreed to do another laparoscopy. Though it’s unclear whether the endometriosis caused it, it turned out she did have an appendix infection—one that had repeatedly healed and gotten re-infected for six months to a year, causing her appendix to swell to three times its size. She thought there was hope once the appendix was removed, but her pain persisted. It still has. “My life would be so different if it wouldn’t have been allowed to go on,” she says.
Even now, it’s a struggle to get doctors to even treat her. Last summer, one told her that her illness was “all in her head” and that if there really was something wrong with her, she should let him know once she figured it out.
Though Norman’s illness limits her physical activity, she’s been able to spread awareness of endometriosis and other women’s health issues from her home in Maine as a writer. In addition to serving as senior science editor for Futurism and hosting the podcast Let Me Google That, she runs the Medium site Ask Me About My Uterus, which is dedicated to reproductive health. This is also the name of her memoir, which chronicles her struggle with endometriosis and the chronic pain and illness that followed. Through both, she’s hoping to break the silence around menstruation, which she believes contributed to her going undiagnosed for so long.
“I was raised to make sure I did everything in my power to make sure people didn’t know I was on my period,” she says. “For years, I had bad periods. For years, I had weird symptoms. I never paid attention, but if I had, who would I have told?…There’s this idea that you need to preserve the feminine mystique. That serves men because men don’t want it to be ruined for them.”
After years of writing and speaking about women’s health, she’s heard from woman after woman who have been ignored by doctors and left to suffer, and she’s realized her own case is not even the worst. “What haunts me are the women in my mother’s demographic who have been enduring excruciating sex and raising their kids and holding down jobs and trying to mitigate their pain without anybody knowing about it, and they’ve been doing it for 30 years,” she says.
Her hope is that just as she’s gotten more support than these women, the next generation will have more knowledge and resources and understanding than her. “There’s no hope for me. I’m not gonna get back the years that I’ve lost, and I’m progressively getting more ill,” she says. “I want to advocate and be helpful and I physically can’t do it. So I like the idea that this book is going to be in libraries and find places I can’t get to. It’s nice to know that in those moments, where they’re exhausted, where they can’t tell anyone, it’s nice to feel like I’ve offered something.”