Endometriosis is a source of hidden pain for millions. One congresswoman is dedicated to changing that

When she was 18, Abby Finkenauer was hospitalized for four days due to a severe pain in her abdomen. Doctors performed a laparoscopy, making several small cuts into the abdomen so they could insert a camera to view her reproductive organs. After years of suffering, that's what it took for Finkenauer to finally learn the source of her discomfort.

"It was really bad and I didn’t know what it was. Those years of not knowing [were] incredibly frustrating and isolating [when] you don’t have a name for what you’re going through," Finkenauer, now 31 and a Democratic congresswoman for Iowa, tells Mic. "There are so many women who shouldn’t be in this spot — they should have the education and have the word."

The word is endometriosis, and it describes a condition where the uterine lining, known as the endometrium, grows outside the uterus. It’s incredibly painful and, because it is misunderstood by most physicians, underdiagnosed. Even though Finkenauer got her diagnosis over a decade ago, the pain has not subsided.

Having spent more than a decade of her life struggling against an intermittent stabbing sensation in her stomach, Finkenauer, who was elected to Congress in 2018, wants to use her public platform to raise awareness of endometriosis and, just as importantly, make it more of a priority within the research community. There's no known cure for endometriosis — and beyond that, the treatments that do exist for women (or anyone with a uterus who is enduring the condition) are often expensive, intrusive, and have varying degrees of effectiveness.

That's why Finkenauer launched the House Endometriosis Caucus in March. Through the first-of-its-kind caucus, Finkenauer wants to not only educate the public about endometriosis, but also dramatically increase the nation's financial investment in the issue. She is calling to double endometriosis research funding to a total of $30 million; in 2018, funding topped out at $7 million, and last year, about $13 million went to endometriosis research.

Finkenauer particularly wants to see increased investment from the National Institutes of Health, the federal agency responsible for directing research priorities and funding research grants. Funding rarely gets doubled in one year, she says, but she knows that even $30 million isn't enough to meet the needs of those who suffer from the debilitating periods, migraines, vomiting, infertility, and even organ failure that endometriosis can cause.

The numbers are staggering: For every $1 the federal government invests ... the patient pays $9,000.

Research is a critical first step to improving patients' experience with endometriosis; the more doctors know about the condition, the more they'll be empowered doctors to quickly and decisively diagnose it. Importantly, that would also help determine exactly how many people are living with endometriosis in the first place: Even though common knowledge holds that endometriosis affects 10% of American women, this estimate is "outdated," says Piraye Beim, a researcher who has endometriosis and the founder of Celmatix, a biotech company that researches women's health issues through data analytics. The actual percentage is likely higher, Beim tells Mic.

There’s no cure for endometriosis, so when doctors do properly diagnose the condition, the primary goal is to mitigate the pain. More funding will open the door to developing more treatment options. Typically, physicians start by prescribing an oral contraceptive: Endometriosis partially results from too much estrogen in the body, and the birth control pill is a relatively easy way to trick the body into suppressing estrogen levels. But because the treatment is hormonal, finding the right balance of a patient’s hormone levels is an imperfect process that could take years, Beim says. New research could help find alternative solutions that may work faster for some patients.

But in order to get this investment from the medical community, there has to be demand. That's why Finkenauer formed her bipartisan caucus: She's hoping it will help start a much-needed conversation about endometriosis, given that many Americans don’t even know this condition exists.

Until this year, national funding for endometriosis research settled near the bottom of the list. Research priorities aren’t necessarily dictated by how many Americans suffer from a disease, says Beim. Instead, she tells Mic, priorities can be based on past investment or socially-agreed upon norms of what is considered to be a serious disease. For instance, Crohn's disease affects 1.3% of the adult population, or just over 3 million people, and received $76 million in funding last year. According to the Centers for Disease Control, asthma affects 25 million Americans per year and received $313 million in research funding in 2019.

"It’s not good [enough] to figure out treatment options if women can’t afford them."

The result is that millions of women pay billions of dollars out of pocket each year for endometriosis treatment, whether they're paying for appointments with doctors and specialists just to get a diagnosis or paying for surgery and other forms of pain mitigation, like physical therapy or acupuncture. The numbers are staggering: For every $1 the federal government invests, Beim says, the patient pays $9,000.

And that's just the patients who can afford to pay for surgeries and care; as Finkenauer notes, there are many who can't. She says that after increasing research funding, the next step will be to work with insurance companies to make sure they'll cover surgeries and specialist visits, because right now they largely don't. Endometriosis care is often cost-prohibitive, Finkenauer says, which means that the millions of girls and women who have painful periods aren’t able to access the minimum gynecological care they need, let alone receive the elusive endometriosis diagnosis that could lead to future treatment. She wants to use the caucus to mobilize the government's resources.

"How can we make sure that everybody has access [to the care they need]? It’s not good [enough] to figure out treatment options if women can’t afford them," Finkenauer says, because endometriosis "doesn’t discriminate."

It's not just that women pay their own way, but that they lose out on education and work opportunities by staying home to deal with pain too. "We lose $78 billion a year from the U.S. economy" by having to stay home from work, Finkenauer says, and many of these people "might not know why they’re sick in the first place."

But to make real change, you can't just fund the research; you have to fund the process of turning the research into care options as well. “Even if you know things, [that] doesn’t mean that the funding is there to translate that into treatments,” Beim says.

As Beim explains, tackling a disease starts with how much you know about it. But girls and women have gone decades being told erroneous and harmful “facts” about endometriosis, Lucy Erickson, the director of scientific programs at the Society for Women’s Health Research, tells Mic. Erickson says that some patients are told that a pregnancy or hysterectomy (a procedure that removes the uterus) will address the disease, that teenagers can’t suffer from endometriosis, or that the level of pain they're feeling is an indicator of how severe their condition is. All of these statements are untrue, but there’s not enough funding to debunk these myths en masse.

That means that patients are left to embark on what Beim calls a “disease journey,” where they see about four doctors on average before receiving a diagnosis. That "journey" can last upward of 10 years, Beim says, and can be costly as patients seek out various specialists in search of an explanation for their pain.

Finkenauer’s journey started when she was in high school. "It was really 16 through 18 when it was really bad and I didn’t know what it was," she tells Mic. "I struggled through my 20s." Finally, after "going to doctor after doctor," she says, she had the laparoscopy — the first of two endometriosis-related surgeries.

As a teenager, Finkenauer remembers lots of conversations in school and doctor's offices about other period-related illnesses, like toxic shock syndrome. But there was silence when it came to endometriosis. She and her friends didn’t talk about this kind of period pain, she says, and had there been a broader cultural understanding or national conversation around endometriosis, her experience might have been different.

But even if a young person does opens up a conversation about their pain, they often have to convince an older parent or guardian that what they're feeling is real and urgent, and not merely routine menstrual cramps, Christine Metz, the director of OGBYN research at Northwell Health, tells Mic. As Metz notes, many girls are told by their mothers or grandmothers that "bad periods" are common or unavoidable, which means that for younger people who may have just gotten their periods, they may have trouble convincing others that what they're feeling is not normal. "Normalization can come from men, doctors, and other women," Metz says, "because pain is invisible [and] subjective."

Finkenauer didn't know what endometriosis was when she started talking about her pain, but she did have one major advantage: Her mother believed her. When Finkenauer first started feeling symptoms as a teenager, she says, her mom remembered a family member, possibly an aunt, "talking about pain very similar to what I was describing." That led her mom to think, "Something's going on here, [and] it may be hereditary," Finkenauer says.

Finkenauer was diagnosed just a few years after opening up to her mom. And even though it took more than a decade for Finkenauer to finally learn what was happening inside her body, she considers herself "lucky" to have found the answer so quickly.

Endometriosis patients, more often than not, will receive a misdiagnosis at first, usually of irritable bowel syndrome (IBS). Some of the side effects of endometriosis can include gastrointestinal issues, and IBS is much more widely understood by physicians than endometriosis is. It also doesn't require a surgery to diagnose, where endometriosis does. A misguided IBS diagnosis is so common, in fact, that the excessive bloating and stomach discomfort associated with the disorder is sometimes called "endometriosis belly" by researchers and patients.

But sometimes misdiagnoses lead to grave danger. Melissa Boudreau, a 40-year-old woman who has suffered from endometriosis since she was in middle school, was not as fortunate as Finkenauer in that her family didn't initially take her pain seriously. Her grandmother and doctors told her that her symptoms were "just painful periods," she tells Mic. For a long time, Boudreau was turning to online chat boards for help, where she "got a lot of really good peer-to-peer information" — information she wasn’t getting from doctors.

She was first diagnosed with IBS, she says, but she "knew something else was wrong." She ended up searching "IBS misdiagnosis" in Google because she knew that her medical issues were much more severe than what the doctors were telling her, she explains.

"Women's pain is not taken seriously [and] not trusted."

Even after having her first endometriosis-related surgery at age 15, doctors didn't really explain the condition or how she could treat it, Boudreau says. For her, the pain was debilitating, but because doctors didn’t seem to think it was a big deal, Boudreau continued on with her life and tried her best to ignore the pain. When she was in her 20s, she flew to a women’s hospital for an endometriosis surgery performed by a specialist, not by a general OBGYN as had been the case in her earlier surgeries. It was there she received the explanation she had been looking for.

Diagnosis and repeat surgeries didn't stop the pain, though, and Boudreau's health issues continued. Endometriosis can "take a kidney, collapse a lung ... and give you a bowel obstruction. All three of those things could kill you," Boudreau says. In her late 30s, she developed endometrial cysts that strangled and obstructed her bowels, which nearly proved fatal. The surgeons who saved her life didn’t know how she had survived with the condition for so long, she says.

What Boudreau experienced is not uncommon. "Women's pain is not taken seriously [and] not trusted," says Melissa Laitner, the director of science policy at the Society for Women’s Health Research. Laitner tells Mic that the sexist belief that women are prone to anxiety and hysteria can often delay a diagnosis and silence a patient, as doctors make them feel as if their pain isn’t valid. Racism also plays a role: Laitner explains that some doctors "falsely believe that African American patients feel less pain." There’s little research into the racial disparities of treatment for Black women who manage endometriosis, but across the board, Black patients are less likely to be believed when they describe pain. They’re also more likely to endure medical issues that may look like endometriosis, like uterine fibroids, a painful disease that can cause heavy bleeding and even miscarriage.

Finkenauer says that the outpouring of support for her caucus from those who suffer from endometriosis, or love someone who does, has been moving. "To hear the stories some have shared with me, it’s humbling. It’s something that we just have to keep fighting for and make sure that folks are heard on this." She says that some of her fellow congresswomen have opened up to her too about their own experiences with the condition. After years of suffering in silence, she's now created an endometriosis community on Capitol Hill.

"I decided it was time to actually hear the story." And while there’s not a cure at the moment, Finkenauer says, she wants "to make sure that we give folks hope."