If you’ve already heard of endometriosis, it’s probably because you have it. Or you know someone that does. In fact, you may have it and not know it. Welcome to the conundrum that is endometriosis.
Generally regarded as a disease of the reproductive system, endometriosis is a condition where cells that are similar to those that make up the lining of the uterus implant themselves elsewhere in the body. Usually if cells wind up somewhere they don’t belong, the body’s immune system cleans up the mess. For reasons that medical science still haven’t unraveled, people who have endometriosis end up with rogue endometrial-like tissue in places other than where it’s supposed to be, and it stays there—behaving as though it was in the uterus where it’s meant to be. That means responding to change hormonal cycles, which includes bleeding—just like during a period. The problem is, if someone has lesions on their ovary, fallopian tube, the wall of their pelvis, their intestines, their liver, their lungs or in some cases strange places like their diaphragm, that “menstrual effluent” has nowhere to go. It proceeds to cause inflammation and scarring, which can lead to a host of symptoms—the primary of which is pain.
Endometriosis is often presented as a woman’s disease, because of its association with the uterus. But as we know, not everyone with a uterus is a woman. And if you want to get really technical, lesions of endometriosis have been found in men undergoing treatment for prostate cancer, wherein they are often receiving estrogen. While endometriosis is often discovered because a person has period-related symptoms that lead them to suspect something’s wrong, it’s also not strictly a period-dependent condition. Research has also found endometrial lesions in the pelvic cavities of fetuses and newborns during autopsies.
Early theories of endometriosis’ origin that have persisted well into the modern era claim that these lesions result from “menstrual backwash” where, essentially, the blood and tissue that should pass through the vagina during someone’s period instead finds its way out through the fallopian tubes and into the pelvic cavity. This mechanism would make sense if endometrial lesions were only ever found in sites close to the opening to the fallopian tubes—but that theory doesn’t explain how some people end up with lesions outside the confines of their pelvic anatomy.
It’s only been within the last few decades that medicine has stopped referring to endometriosis as a “career woman’s disease”—by which they also meant, specifically, a white woman’s disease. Medical professionals thought that women who weren’t getting pregnant (often delaying childbearing in favor of education or career) and who had “high stress” lifestyles were the ones who ended up with endometriosis. This connection got even more warped when they started saying that endometriosis always caused infertility. In fact, it does not. But often a woman finds out that she has endometriosis because she’s been having trouble getting pregnant. If a couple is having a hard time conceiving, they’re more likely to seek out the services of their friendly neighborhood OB-GYN. A person who has had miserable periods their entire life, which our culture has largely normalized, is less likely to seek out care. And if they do? Medicine doesn’t exactly have a great track record of taking women’s pain seriously.
Some members of the medical establishment still tout pregnancy as a “cure” for endometriosis, which is also false—and throws a major wrench in their theory that endometriosis causes infertility. The contradictions further prove the disconnect many women experience between their own account of their symptomatology and the medical profession’s response. They are often dismissed, told that they need to relax, or otherwise made to feel as though their symptoms are “all in their head.”
In the case of endometriosis, it doesn’t help that medical science, first of all, doesn’t really know what a “normal” period should look like, and two, doesn’t have a “textbook presentation” of endometriosis. Some people who have lots of lesions never experience pain, bloating or menstrual irregularities and only find out they have endometriosis when they can’t get pregnant, and the have a laparoscopy to find out what’s wrong. Other people might just have a few lesions, but end up with debilitating pain that limits their ability to work, have sex, enjoy physical activity and even be able to eat properly.
As you might have guessed, medical science doesn’t yet know why that’s the case, either.
It might sound like a pretty hopeless situation—and for many with the condition, it at times, feels hopeless. But a group of researchers at Columbia University thinks there’s reason for hope: they’re working to contribute to the body of knowledge on endometriosis, and they need the help of patients to unlock the mysteries of the disease.
Citizen Endo was brought to life in Columbia’s Department of Bioinformatics by Associate Professor Noémie Elhadad, PhD, who is the project’s principal investigator. I met Elhadad when I was researching my book on endometriosis, because in addition to being the project’s lead, she also is an endometriosis patient herself.
Together with Mollie McKillop, MPH, MA, Sylvia English, MS., and Sharib Khan, MD, MS, Citizen Endo has been developing an app called Phendo that people with endometriosis can use to track their symptoms. In turn, the researchers at Columbia are hoping to take that data and help create a more robust—and less convoluted—clinical picture of the disease. The app’s name is a portmanteau of the words “endo” and “phenotype.” A phenotype is what scientists call the set of observable characteristics in a patient with a certain disease.
Research has also shown that there are different types of endometriosis lesions — and the team of researchers working on Citizen Endo suspect that means there are likely different phenotypes within the population of patients with endometriosis. In order to investigate that theory, though, they need data. With the popularity of self-tracking health apps, especially of the menstrual variety, it made sense to develop an app that could be used by those with endometriosis as a way to track their symptoms—and not just when they’re having a period, either. As most people with the condition know, endometriosis can affect a person every single day, whether they’re actively menstruating or not.
They’re also hoping to help contribute to research regarding treatment, and hopefully one day working toward developing a cure. As it stands now, endometriosis is not a curable illness across the board. Some patients have reported a complete reduction in their symptoms after undergoing a special type of surgery called excision—but there aren’t that many surgeons who do it (or do it well), and disparity in access to healthcare is a major hurdle for many patients who would benefit from access specialities, but aren’t able —often for economic reasons. Some patients feel better taking birth control pills, having an IUD implanted or using a drug called Lupron suppress their menstrual cycles. Some patients feel better for a few months or years, then their symptoms come back. Some patients notice their symptoms go away while their pregnant, only to return with a vengeance after they give birth. Some patients have tried every drug, every surgery, every alternative therapy, every diet and every ounce of magical thinking in the book and they still have no relief.
That’s one thing that keeps the Citizen Endo team motivated, and what they hope will encourage patients to download their app and take part in the research effort. In an email, Elhadad said one of the most remarkable thing she’s noticed so far is how willing people are to get involved: “Women with endo have a strikingly strong altruistic sense and want to be heard and contribute to research,” she says. Considering how overpowered—or powerless—a woman with endometriosis often feels by her own anatomy in revolt, it’s not surprising that so many want to help slay the diagnostic dragon once and for all.
Phendo has officially rolled out for Apple devices, and it’s coming to Android soon, but the research is constantly evolving. Elhadad says the team is eager to find new ways to keep patients engaged and involved not just with the self-tracking piece, but but other areas of data research as well. “The challenge,” she says, “is how to create a community of citizen scientists.” Not just a community of citizen scientists, but a community of patients whose needs have been woefully unmet by the medical community at large since endometriosis was first described in medical textbooks more than 100 years ago.
As is often the case with scientific research—especially in areas like women’s health that the federal government isn’t exactly chomping at the bit to support—Citizen Endo is reliant upon grant funding to help keep their investigation going. They’re hoping that as more patients become involved and they build up a repository of data, they’ll be able to get the funding they need to continue on. The hope is that when that happens, they’ll be able to build a self-management interface into the app that will help patients become active not just in the larger goals of academic research, but be effective advocates in their own care.
In a post on Citizen Endo’s Medium page, where they’ve been updating folks each step of the way as they prepared to launch Phendo, the team shared some of the responses they had when they began surveying endometriosis patients about their experiences. It’s a sobering look at how often, women are doubted so intensely by their partners, their families, friends and doctors that they eventually begin to doubt themselves, even as they are debilitated by pain.
As one patient wrote, “I constantly doubt that my pain is real despite having it surgically diagnosed.”
For patients, the quantified aspect of an app like Phendo—and the data research that is coming of it—may be something of a salve to that doubt. Not only in helping them understand their own symptoms, and their own unique experience with endometriosis, but perhaps most important of all, to reassure them—through the power of numbers and hard science—that they are not alone.
Photo by Ed Uthman, CC-BY
Abby Norman is writer based in New England. She’s currently working on a memoir for Nation Books and is the weekend science editor at Futurism. Her work has been featured in The Rumpus, Atlas Obscura, The Establishment, Cosmopolitan, Seventeen, Medium, The Independent, and others. She’s represented by Tisse Takagi in New York City.