Your Tampon Is Drowning In Data. This Company Wants To Study It.

Since 2021, Jessie Fream has collected her used tampons, sealed them in jars, and dropped them in the mail. “It isn’t a messy or gross process,” Fream tells Bustle, adding, “I got paid to do it too — $25 each tampon! Periods cost me money, they don't make me money!”

Fream, 40, is among the volunteers for NextGen Jane, a California-based startup working to improve OB-GYN care, that has so far collected more than 1,500 used tampons from women across the U.S. to study their menstrual blood. Why? Because the endometrium — the inner lining of the uterus that sheds during a period — is like a mucousy diary of everything that happens in the body, including hormonal changes triggered by disease. And as someone who’s recently been diagnosed with endometriosis (endo), after an “extremely long, costly, and psychologically tough” medical journey, Fream hopes her samples will help NextGen Jane find new ways to diagnose the disease. “I figured, I'd either flush it down the toilet, or send it off to help change lives. It was a no-brainer.”

“People are already on some level using their menstrual blood as an indicator of health: Is my period late? Is it early? Is it heavier or lighter than usual?” says Ridhi Tariyal, a scientist and engineer who co-founded NextGen Jane in 2014 with scientist and designer Stephen Gire. By mapping the genomic profiles of cells in this fluid — referred to colloquially as blood, but technically called “effluent,” as it also contains endometrial cells, hormones, and more — Tariyal hopes to find biomarkers that can be used to develop tests for specific diseases, as well as better treatments. (Early reports on the company deemed their technology the “smart tampon,” but Tariyal says “it’s not the tampon that’s smart. It’s our bodies — tampons are quite dumb.”)

Ultimately, the company wants to get a version of their collection kit into doctors’ offices, where it could be prescribed as a diagnostic test, much like other kits for at-home sample collection. But for now, NextGen Jane is relying on its pool of volunteers to provide samples for its clinical trials, which aim to learn more about conditions like adenomyosis, fibroids, preeclampsia, preterm birth, and perimenopause. Compared to other players in the uterine health game, “We truly believe that we’re doing the most ambitious data generation,” says Tariyal.

Doctors have been collecting urine samples for about 6,000 years, and stool samples for at least 100, yet the drive to collect menstrual blood is relatively new — largely because of the enduring stigma surrounding periods, coupled with the long history of gender bias in medicine. “If it’s not your lived experience, it doesn’t even occur to you that menstrual blood might be very useful [to study],” Tariyal says.

“People are embarrassed to talk about menstrual blood,” says Christine Metz, a professor in the Institute of Molecular Medicine at the Feinstein Institutes for Medical Research in New York. “Although a lot of people learn about it in school, their own mothers can’t even discuss it with them.” Metz is co-director of the ROSE study, a group of clinical trials that also analyzes period blood (collected via menstrual cups) to improve our understanding of endometriosis and eventually develop an early, noninvasive screening tool that could predict the disease in people who have symptoms. When the team published its first study in 2018 and presented it at medical conferences, Metz says other scientists laughed at them. Regardless, they pushed ahead and published further research in 2022.

It doesn’t help that the quality of sex education is dire in many states. Florida politicians recently banned elementary-aged students from even talking about their periods in school in a new bill that Gov. Ron DeSantis signed into law in May and went into effect July 1. People assigned female at birth may get their period anytime between 8 and 15 years old, and conditions like endo can affect them long before that. Lack of education also means women’s pain is frequently normalized, so much so that conditions like endometriosis are often misdiagnosed as irritable bowel syndrome, appendicitis, ovarian cancer, STIs, colon cancer, pelvic inflammatory disease, and even mental health disorders.

Given all the baggage, you might think that people would be reticent to donate their menstrual samples, but Tariyal hasn’t found that to be the case. Perhaps that’s because the process is fairly simple: The company sends a kit packed with organic cotton tampons and jars with special buffers to women with varying backgrounds and health conditions. Participants are instructed to wear the tampons for a certain number of hours during their heaviest flow days toward the beginning of their period and dispose of them in the jars. (Fream’s only complaint, as someone who bleeds a lot during her period, is that sometimes she really wants to change her tampon more often than the company’s instructions allow, but she says she’s more than happy to push through the slight discomfort.) Participants also answer a series of questions about health status and symptoms, such as whether you have an autoimmune condition, what medications you take during your period, and if you have to miss school or work due to pain. Once kits are mailed back to NextGen Jane, scientists use technology called bulk-RNA sequencing to profile diverse cells important to menstruation, Tariyal says. This creates a snapshot of what’s happening in the uterus “day by day, cycle by cycle, across different birth control regimes, and under the stress of different disease states.”

In the age of dwindling reproductive health rights, privacy is a natural concern, but all personal data is anonymized with an alphanumeric code and isn’t shared with employees, advertisers, insurers, or anyone else, Tariyal says. A detailed informed consent process ensures all volunteers know this from the start. Farah Diaz-Tello, senior counsel for If/When/How, a national nonprofit network of law students and lawyers in service of reproductive justice, tells Bustle that while everyone should be skeptical and protect their private health information, “the risk in this context seems extremely attenuated."

And the potential upside is high. Many of NextGen Jane’s clinical trials are still a long way from publication, but one trial focusing on endometriosis — a condition that takes an average of up to 10 years to diagnose — is of particular interest, and it’s nearing the finish line.

“If it’s not your lived experience, it doesn’t even occur to you that menstrual blood might be very useful [to study].”

Endometriosis is a disease that occurs when the type of tissue that forms the lining of the uterus grows outside the uterus, mostly in areas of the pelvic region like the ovaries and fallopian tubes, but also in the kidneys, bladder, intestines, or lungs. This tissue responds to monthly changes in estrogen, growing and bleeding like the uterine lining does during a menstrual cycle. The inflammatory process can form painful scar-like tissue called adhesions, and cause abnormal and painful periods, fatigue, GI distress, pain during sex, infertility, and other debilitating symptoms. Some people don’t have any symptoms and only learn about their condition when they cannot pregnant or when they have surgery for other reasons.

Even though about 1 in 10 women in the U.S. have endo, according to the Endometriosis Foundation of America (a rate researchers say is a gross underestimate), doctors are often at a loss when trying to treat and diagnose patients with the disease. That’s partly because of underfunding: As of 2017, the National Institutes of Health’s endo funding was just $6 million; it’s since jumped to $27 million, but that’s still only 0.06% of the NIH’s budget for medical research.

Currently, the only way to diagnose endo is with a surgery called a laparoscopy, in which an incision is made in the abdomen to remove rogue endometrial tissue and send it off to be tested in a lab. The surgery is also a treatment for the disease, but while most women will feel relief from the tissue removal, up to 80% will experience pain again within two years because some endo tissue was either not visible or could not be removed, according to the American College of Obstetricians and Gynecologists. Many doctors are therefore hesitant to even perform the surgery for some patients. “There are lots of reasons why endo is underdiagnosed and treatment is delayed, and a lack of a noninvasive test is one of them,” says Dr. Dan Martin, M.D., a retired OB-GYN and scientific and medical director of the Endometriosis Foundation of America.

Another reason, Martin says, is that many medical professionals disregard patients’ symptoms. He remembers a patient who was referred to him by a physician who believed the woman had Munchausen’s syndrome — a psychological condition in which people lie about being sick or induce illness for attention. The woman was later confirmed to be endo positive. It’s medical gaslighting and a “diagnostic odyssey that just eats up your funds and time,” Tariyal says. “You have to be really well resourced to want to fight through a system like that.”

Celia Stafford, a 28-year-old Ph.D. candidate in health care management at the Harvard Business School, had no choice but to endure this system for years. Around 18 years old, she began to experience heavy cramping and random episodes of pelvic pain so severe she would sweat, collapse, and hyperventilate. Eventually, it started to hurt to breathe and use the bathroom. Dozens of doctors speculated Stafford had a number of conditions ranging from multiple sclerosis to seizures. Several vaginal ultrasounds were clear, so doctors ruled out endometriosis from the start. “I was at a loss; I didn’t know what to do,” Stafford said. It wasn’t until a pelvic floor therapist told Stafford about Nancy’s Nook, a Facebook group with more than 178,000 members where information about endo is shared, that she found the doctor who would help her. Stafford underwent surgery in 2021. “Overnight, I went from not being able to function to having no pain at all.”

Just two months ago, Stafford met Tariyal at a women’s health summit at the Harvard Business School. She was happy to hear about NextGen Jane’s efforts to find a diagnostic test for endo, so now she’s helping the company recruit participants for its clinical trials. “Most other companies’ ideas are just Band-Aid solutions,” Stafford says. But a noninvasive diagnostic test? That could be life-changing.