What Is Endometriosis?

For one week every month for more than 20 years, Padma Lakshmi was out of commission -- "and I mean: Out. Of. Commission," said the 45-year-old celebrity chef at a February briefing in the District of Columbia.

As a teen during that week -- the week of her period -- she couldn't study, go to volleyball practice, help her mom in the kitchen or go to school dances. Instead, she was bedridden in the fetal position, seeking comfort from heating pads, pain patches and prescription painkillers such as Vicodin and Percocet.

In college, she missed exams, sports and social events. As a model touring Europe in her 20s, she canceled gigs and learned the foreign names of those painkillers that she needed to cope. Her intimate relationships suffered; later, her first marriage collapsed. "I missed 25 percent of my life," Lakshmi said.

Still, no one thought anything was wrong. Lakshmi began to believe they were right. "[If] your mother tells you that pain is just part of being a woman," she said, "you start to internalize that this is your lot in life."

But it didn't have to be. Far from normal period pain, Lakshmi was experiencing the excruciating symptoms of endometriosis, a medical condition affecting about 10 percent of American women, in which tissue similar to the uterine lining, or endometriosis, grows outside of the uterus. The misplaced tissue goes through the same monthly cycle as the uterine lining, but can't be expelled in a period and so it builds up instead. The condition is one of the top causes of infertility and pelvic pain.

"Think about endometriosis like [a weed] that spreads and wraps itself around [a woman's] intestines, attaches itself to her kidneys, her liver, all of her internal organs -- it can even go up to her lungs," explained Lakshmi, co-founder of the Endometriosis Foundation of America.

More than a tissue malformation, endometriosis is an inflammatory condition that can affect the whole body. But in part because symptoms can look like everything from irritable bowel syndrome and appendicitis to " killer cramps" and fibromyalgia, the disease is readily misdiagnosed. Worse yet, it's dismissed as hypochondria. On average, it takes women 10 years to be diagnosed, the Endometriosis Foundation of America reports. It took Lakshmi 23.

"[Endometriosis] not only brings excruciating pain and very serious health risks to all of your major organs, [but] the worst part of it is emotional," she said at the briefing that urged lawmakers to fund more research on the condition.

Lakshmi's story is common. Dr. Iris Orbuch, an OB-GYN who directs the Advanced Gynecologic Laparoscopy Center in New York City, where she specializes in treating women with endometriosis, says many of the women she sees spend years seeking medical help for their symptoms without ever hearing the word "endometriosis." "It's a long journey of seeing multiple physicians and everybody saying, 'It must be in your head,'" she tells U.S. News. "But it's not -- these women are really suffering."

Complicated Causes and Costly Consequences

What causes endometriosis? Like many medical conditions, it's some combination of genetic and environmental factors, said Linda Birnbaum, director of the National Institute of Environmental Health Sciences, at the District of Columbia briefing last month. On the genetics side, girls who have a close female family member with the condition are five to seven more times likely to develop it as well. In terms of environment, Birnbaum's research has linked environmental toxins like dioxins -- a pollutant mainly found in meat, dairy and fish -- to the disease.

"If we can identify the hazards associated with chemicals ... we can identify and modify environmental factors," said Birnbaum, noting that rates of endometriosis are rising, likely due to chemicals in the environment.

There's also a hormonal component to endometriosis: Estrogen seems to promote it. Even substances in the environment that look like estrogen can influence development of the disease. Research suggests women who were fed soy milk as babies, for instance, are more likely to have endometriosis, probably because soy has estrogenic properties, Birnbaum said. ( Soy milk is now not advised for little ones.)

Women with endometriosis also seem to have malfunctioning immune systems. "There appears to be real problems with the immune system, which should be able to clean up all this menstrual fluid, which is where it doesn't belong -- and that doesn't happen," Birnbaum said.

But until the condition's exact cause is better understood and prevention possible, the best defense against endometriosis is early diagnosis. For Rebecca Ritzel, a freelance journalist in the District of Columbia, finding the condition earlier would have made a big difference. The 37-year-old's worsening gastrointestinal issues were misdiagnosed as irritable bowel syndrome, but medicines to treat it did nothing. She had a colonoscopy, but because that test won't detect endometriosis, all came up clear. After extreme abdominal pain landed her in the emergency room four times, staff thought she had appendicitis, then suspected she was a painkiller seeker. Ultrasounds revealed cysts but couldn't detect endometriosis.

Then, last year, her doctor told her she had endometrial cancer "arising from" undiagnosed endometriosis. (Research suggests anywhere from 2 to 17 percent of endometriosis becomes cancerous, and women with the condition are at increased risk for ovarian cancers.)

"He said, 'Rebecca, your test results came back as borderline cancerous. I'm going to check you in, and I'm going to see you in the morning,'" Ritzel recalls. "And then I threw up on a poor nurse." She had the cancerous cysts removed, as well as her ovaries, and underwent three rounds of chemotherapy to treat the cancer. She also had surgery to remove the endometriosis, which had spread throughout her abdominal cavity. Without ovaries, she won't be able to have children. "My oncologist thinks that if we'd gotten to it just six months earlier, we could have saved my fertility," she says.

But catching it earlier didn't happen in part because endometriosis is so rarely discussed -- even in Ritzel's family, which had a history of the condition. "I think we really need to, as a culture, become more comfortable talking about this," she said in an interview with U.S. News, "but the fact that my aunts and my mom hadn't been upfront about endo was hard to take."

Lakshmi agrees that raising awareness -- in the public, in families and among medical professionals and researchers -- is key to fighting endometriosis. "I don't want any young girl to feel bad about talking about this disease. I don't want her not to have the same opportunity that a healthy young girl sitting next to her has or her male counterpart has in school or on the soccer field," she said at the briefing.

"There are a lot of things we can do, we just need to open our mouth and be willing to do it," Lakshmi added. "We owe it to our daughters and our sisters and our wives and our mothers to do that."

Getting Your Life Back

By the time Lakshmi, now 45, was diagnosed with endometriosis at age 36 -- something that can only be officially done with a biopsy -- she'd already undergone two "botched" surgeries for ovarian cysts. She's also had part of her left ovary removed, her right fallopian tube removed, a kidney stent inserted and stitches on four major organs to remove the endometriosis and treat the organs it damaged. "This year or next year, I'll go for another procedure because there's no cure," she added, "you have to monitor it."

Other women, those never accurately diagnosed, aren't treated at all.

"A lot of girls get handed antidepressants or anti-anxiety medications because they're told they can't deal with a normal function of a women's life that goes through month after month," Lakshmi said.

Fortunately, doctors and researchers are learning what works best to treat the condition. While women used to be put on birth control pills, which can help with the pain and prevent more abnormal growths by lessening or stopping periods; told to get pregnant, which can temporarily reduce symptoms because being pregnant keeps women from getting their periods; or given a hysterectomy, which removes the uterus (and sometimes other organs) but is unnecessarily extreme and doesn't address the underlying inflammation, the best treatments today are multifaceted, experts say.

"For many years, there was hope that if you did one surgery or gave someone ... hormones, you could change their pain or their fertility," says Dr. Pamela Stratton, chief of the Gynecology Consult Service at the National Institute of Child Health and Human Development, where she studies how to treat endometriosis pain. She's finding the condition actually seems to change women's perception of pain, even if the diseased lesions have been removed. "What we've come to better understand is that this is a chronic disease," Stratton told U.S. News.

Still, "one surgery done right" is an important first step in treating the disease, Orbuch says. Her team is one of the few that uses laparoscopic surgery -- a minimally invasive approach performed through a small incision in the belly -- to both diagnose endometriosis and cut out the lesions with scissors. The procedure is more successful than ablating -- or essentially burning off -- the diseased tissue, since the latter can miss endometriosis beneath the surface and require further treatments, Orbuch says.

"Women will say, 'My endo grew back,' but what really happened was it was never removed properly in the first place," says Orbuch, who recommends finding a physician who specializes in endometriosis, since generalist OB-GYNs don't receive much training on the issue. Few gastrointestinal doctors or primary care physicians are well-versed in the disease, either.

"In medical school, there is so little teaching on endo -- maybe a couple of paragraphs in a medical school textbooks," Orbuch says. Her OB-GYN residency, meanwhile, had "no formal training" on the condition, she says.

Even if the endometriosis is successfully removed, women with the condition still need to manage lingering symptoms by, for example, eating healthfully, exercising and finding ways to cope with stress. Physical therapy and alternative medicine procedures, such as acupuncture and meditation, can help some women, too. For women like Ritzel who've had reproductive organs removed, the effects of early menopause such as osteoporosis and hot flashes need their own management. Social and emotional support is critical, too. "If one is more anxious or depressed, the pain is going to feel worse," Orbuch says.

But as Lakshmi -- a successful chef, TV host, producer, model and author -- demonstrates, endometriosis doesn't have to rule your life -- even 25 percent of it. "If you treat [women] properly," Orbuch says, "you can give them their life back."