It got popular the way a lot of things do: celebrities and social media. There was Halsey on Instagram, posting, “For those of you who have followed this battle of mine...you know the extremes to which it can be mentally exhausting and physically painful....I’m in total agony right now.” Alexa Chung wrote about how much it “sucks.” Lena Dunham described it as something “eating me from the inside.” Julianne Hough hid the “emotional trauma” from loved ones. Sarah Hyland called it “one of the most painful things I’ve dealt with.”

So much star power and yet...nobody cared. Well, not nobody: Regular women cared—a lot. Especially those who have endometriosis and so many others who suspect they do. In 2018, “What is endometriosis?” was a top trending health question on Google (beat out only by the keto diet and ALS, another disease that has benefited from famous people speaking out on social). #EndoWarrior became a thing, used hundreds of thousands of times. There were fancy fundraising balls. A worldwide march. It was the kind of high-wattage awareness that often leads to better treatments, big breakthroughs, and major cash being spent to find a cure. Just like it has for conditions like Parkinson’s and breast cancer.

Except, for endo, the opposite is true: At the same time that patients were getting vocal, the government was putting less money toward the debilitating disease, not more. Since 2016, funding for endo has dropped by millions of dollars.

This year, it’s estimated to receive about the same amount as hay fever, which causes...stuffy noses. On the list of conditions kept by the National Institutes of Health (NIH), the largest federal agency responsible for medical research, endo is one of the least funded: number 276 out of 288.

The big lie about endo is this: It’s just “a painful period.” In fact, it’s an often severe condition in which endometrial-like tissue grows outside the uterus, like a freckling of cigarette burns that bleed, which can lead to inflammation and scarring. It has no definitive cause and no cure. Symptoms can include heavy, irregular, or painful periods; bowel or urinary problems; chronic pelvic pain; and infertility. Sometimes, it even fuses internal organs together. At least, that’s how a medical professional would explain it.



People living with endo describe the symptoms differently: “like my insides are being twisted until they bleed,” “blackout-level cramps,” “I gush blood for weeks,” “pain bad enough that I’ve spent days in a ball on the floor,” “like a razor is being scraped inside my stomach.”

For these women, the disease is like a second job. The average patient will spend 10 years seeing 5 doctors for a diagnosis, go through multiple surgeries, and be forced to fork over thousands of dollars (insurance doesn’t always cover the costs associated with necessary endo care).



Autumn, 33, waited 11 years for a diagnosis and has seen more doctors than she can remember. “For years, all I was told was, ‘You’ve got bad periods—buy a heating pad, wear extra-thick pads,’” she says. “Every time I heard that, I felt so small, like I was just a woman who couldn’t manage her periods.” It was a relief when she finally found out why she’d been bleeding through her clothes multiple days out of the month, waking up so many mornings smeared in blood, once even leaving a red puddle on a chair in her boss’s office.



Stories like hers make it all the more maddening that the NIH projects its endo funding to be just $6 million this year. That’s less than $1 per patient—and $4 million less than endo research received just four years ago. For context, Alzheimer’s disease gets about $344 per patient. (Alzheimer’s, by the way, affects roughly the same number of people in the U.S. as endo yet is projected to receive nearly two billion dollars in funding from the NIH this year.)

“Despite its high prevalence and cost, endometriosis remains underfunded and under-researched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options,” reads a recent article in the American Journal of Obstetrics and Gynecology. (And it’s not *just* a money problem: “No other disease has been downplayed as much as endometriosis has,” says Tamer Seckin, MD, an endometriosis specialist and cofounder of the Endometriosis Foundation of America (EndoFound). After all, it’s easier to deprioritize a “period” problem over “real” problems like addiction and cancer and diabetes.)



Still, where the NIH chooses to spend money has a ripple effect throughout the medical community, says Stacey Missmer, scientific director of the Boston Center for Endometriosis. Less endo funding means fewer researchers applying for grants, fewer young scientists choosing to focus on the disease, and fewer doctors deciding to specialize in endo care.

Currently, there are only an estimated 200 true endometriosis specialists in the U.S., says Heather Guidone, surgical program director of the Center for Endometriosis Care in Atlanta. And most are located in urban areas. Meaning that for many women, help is states away, leaving them to see doctors who barely heard the word “endometriosis” in medical school and with no one qualified to turn to for a second opinion. Let alone a third or fourth or fifth.

With NIH funding what it has been, it’s hard to imagine things getting better anytime soon. It’s even harder imagining a cure. “I hope I’m wrong, but I don’t see a cure in sight in the next 5 to 10 years,” says Hugh Taylor, MD, the chair of obstetrics, gynecology, and reproductive sciences at Yale School of Medicine.



Cheeks pressed to the cool tile of the bathroom floor, hips awkwardly in the air. This is the position Autumn often lies in when her endo flares up, and, she says, it’s getting worse. The excessive bleeding now comes with cramps that leave her unable to walk. The medication she was prescribed doesn’t really help. Oddly, contorting her body into made-up yoga moves sometimes does. But only for a few seconds. For her, the loss of endo funding is something she feels.

And it’s mostly someone else’s fault, according to nearly everyone Cosmo asked. It’s the NIH that’s largely to blame...or it’s Congress or researchers or advocacy groups, in a dizzying game of finger-pointing.

For its part, the NIH can’t hand out money that researchers don’t ask for, says Diana Bianchi, MD, director of the NIH’s National Institute of Child Health and Human Development. So if there aren’t enough new, credible applications for endo funding, that could create a dip in grants. (The NIH says it’s not at liberty to publicly share the number of endo grant applications it gets.)

Sounds fair, except that some researchers are asking for money—they just aren’t getting it. Albert Hsu, MD, an ob-gyn and reproductive endocrinologist in central Missouri, says he’s applied for nearly two dozen research grants (five specifically with the NIH) to study endometriosis. All but two were denied. “It’s really hard to get funding,” he says. “Endometriosis, pelvic pain, and infertility—women’s health in general—are treated like

the redheaded stepchildren of the research world.”

SOURCE: 2017 Journal of Managed Care & Specialty Pharmacy Study SOURCE: 2013 Human Reproduction Study SOURCE: 2013 Human Reproduction Study

And then there’s Congress, which approves the NIH budget and has sway over how it’s allocated. The latter process is impacted by a variety of factors, like public awareness, policy advisers, and lobbyists. “What generally happens is interest groups will meet with members of Congress to advocate for a specific condition,” says Dr. Bianchi (she adds that NIH employees, who work for the federal government, are not allowed to advocate personally for certain conditions). This can result in funding being funneled to the splashiest disease areas. Lately, that’s been the opioid epidemic.

It’s not that endo advocates haven’t tried to take their case from social media to the halls of Washington. EndoFound sent a group to Capitol Hill in 2018 for a congressional briefing on why endo needs greater attention. The visit yielded...no new funding.



“In the congressional committees, sometimes I see eye-rolling from men when we start talking about women’s issues,” says Representative Brenda Lawrence (D-Michigan), cochair of the Democratic Women’s Caucus. “We are fighting constantly to try to resolve funding around women’s issues like endometriosis.”



Not enough women in office is one part of the problem. “The more women in Congress bringing their personal experiences means more issues around women’s health will be addressed,” says Representative Jackie Speier (D-California), who is also a cochair of the Democratic Women’s Caucus.



Of course, we also got a new president in 2017, the same time endo funding took a nosedive. And who sits in the Oval Office can influence how NIH funds are allotted by Congress, says Dr. Bianchi.



“This administration has been very heavy-handed in supporting issues that are in their agenda,” says Rep. Lawrence. “Women’s health has not been one of those issues.” Instead, the White House has focused on gutting Title X funding, defunding Planned Parenthood, threatening “punishment” for doctors who perform abortions, and pushing for abstinence-only sex education in schools.

Then, it bears repeating, there’s the elephant-in-the-room reason. A frustrating why behind research dollars sliding to just short of nonexistent and Congress overlooking endo. It’s not just that it’s a quote unquote woman’s problem. “The condition is often dismissed because of its association with periods,” says Dr. Seckin.

This is nothing new, he points out. Endo was long thought of as a “career-woman’s disease,” seen by many as problematic only in relation to its negative impact on fertility. That stigma, says Dr. Seckin, hasn’t gone anywhere.



For now, any progress, as it comes, is in baby steps. In 2018, a medication called Orilissa received FDA approval. It was the first new endo drug to come out in more than a decade. It’s not anything close to a cure, but it does help some women manage pain.



Hope might also come from Big Tech, which is working on a blood test that will help women get diagnosed quicker and less invasively, or nonprofits like EndoFound, which has awarded $1 million in research funding.

Patients, too, are leading the fight. Frustrated by a lack of resources, they have created their own in the form of thriving online communities. More than 1.3 million people have used the #endometriosis hashtag on Instagram. The Facebook group “Nancy’s Nook Endometriosis Education” has more than 90,000 members, adding as many as 700 new ones each week. Sites like these often serve as de facto doctors, allowing women to talk out their symptoms and discuss pain-management techniques, some even self-diagnosing when their actual MDs go too slow. “If women keep speaking up about endometriosis, we can change this,” says Mary Lou Ballweg, founder and president of the Endometriosis Association.

None of this compares to big government money though. Ask people at the NIH and they’ll tell you that revolution takes time and that focusing on endometriosis in the next five years is one of their “aspirational goals.”

Meanwhile, Autumn’s doctor told her that her next step should be surgery, but she hasn’t saved up enough for the thousands of dollars in medical costs that her insurance won’t cover. Or the nearly 250-mile trek from her rural hometown in Maine to Boston, where her specialist is based. She’s hoping to pick up a second job to make some extra money for the procedure. But right now, it’s just an aspirational goal.

