Women Were Long Left Out of Scientific Research, and It’s Led to the Proliferation of Our Pain

Guido Mieth

In this op-ed, Rise Global Winner Diya Sreedhar explores how a dearth of research on women’s bodies has led to the continuation of women’s pain.

The baby’s tiny, malformed limbs trembled in her mother’s arms, a sight that haunted the halls of hospitals across the world. It was the 1950s, and the thalidomide scandal would go on to leave countless women devastated, their trust in medicine shattered. A drug advertised to help with morning sickness, among other ailments, thalidomide ended up causing limb deformities or death in at least 10,000 babies worldwide — though the total number is unknown.

In the U.S., the Food and Drug Administration ultimately did not approve the medication, but as many as 20,000 American women had participated in trials run by a pair of pharmaceutical companies. The situation eventually led in part to the FDA’s decision to suggest excluding women of reproductive potential from the early stages of most clinical trials in the late 1970s, according to the National Institutes of Health’s Office of Research on Women’s Health. Initially, the guidelines recommended barring “premenopausal female[s] capable of becoming pregnant” from Phase I and II trials, except in certain situations, like potential treatments for life-threatening conditions, severely limiting the collection of data about women between puberty and menopause in drug research. These guidelines started to shift around 1986, and then relaxed in 1993 with a law that mandated the inclusion of women in clinical research amid growing concern that their exclusion may have created a dearth of information about how different medications affect women. But by that time, damage had already been done.

For too long, the medical field has treated the female body as an enigma. As a Harvard Medical School study found, even in data from 2016 to 2019, women were underrepresented in trials for prevalent diseases. This gap can pose particular problems for teenage girls, who are at a vulnerable stage of life when proper medical care is crucial. Before I was diagnosed with secondary dysmenorrhea, I endured relentless menstrual pain, not knowing what was wrong. This pain was physical, but it also had wide-ranging mental side effects. Canceling on friends made me feel guilty, knowing I couldn’t explain my situation because I didn’t yet have a diagnosis. And seeing a classmate’s cast covered in signatures, I envied how his pain was visible, while mine remained invisible, even to myself.

At the Rise Residential Summit at Oxford University this summer, I had the opportunity to explore the lack of research on women’s health that contributed to my long invisible pain. Rise is a program sponsored by Eric and Wendy Schmidt and the Rhodes Trust that supports teens dedicated to solving global challenges. As I met with fellow Rise Winners, I was shocked to learn that many of the young women there shared similar struggles with their health, from untreated menstrual pain to confusion around reproductive care.

Jenifer Tamayo Topete, from Mexico, shared a frustration that had been simmering for years. “The information on women’s health is so hidden,” she said, “that girls who aren’t into medicine don’t know that they may have things that are not normal.” In South Africa, Phiwokuhle Makanaka Dumbu noticed similar patterns. “I know that many of my friends had undiagnosed endometriosis for quite some time. It’s quite difficult to measure pain, so various conditions that heavily rely on one’s pain levels are often misdiagnosed.”

Endometriosis, a disease causing uterine-like tissue to grow outside the uterus, takes an average of between seven and nine years to diagnose globally, according to some researchers. Given that the disease is believed to affect up to 10% of women — comparable in prevalence to diabetes — this delay seems outrageous.

Makanaka shared stories of friends whose severe pain was not taken seriously by medical professionals. One friend had been told by a doctor she should “just relax and try yoga,” implying that her symptoms were psychosomatic, Makanaka said. Others were met with comments from doctors like “it’s just a part of being a woman,” “toughen up,” and “shouldn’t you be used to the pain by now?” Their pain was often attributed to stress, anxiety, or simply the realities of womanhood. It seemed that compassion and deeper investigation were routinely absent from their care.

It’s not surprising, then, that so many girls fall into the vicious cycle of being reluctant to seek medical help, fearing that they will be dismissed again. If you are the average woman with endometriosis, that could be almost a decade of being told pain is normal, or worse, imagined. Nearly 10 years of missing school, work, and plans with friends because of pain that no one believes you have.

I can’t help but think of the short story The Yellow Wallpaper, where Jane, the main character, is seemingly plagued with postpartum depression. Locked indefinitely in a room under the guise of treatment, Jane’s mental health devolves as a consequence of being misunderstood and having her needs belittled by those around her — especially by her husband, who was also her physician. But unlike Jane’s world, where medical care was bound by marital and social expectations, we have the opportunity to ask more of our physicians, to demand partnership rather than paternalism. This isn’t just about one woman, one illness; it’s about a fundamental shift in how we, as a society, approach women’s health.

Luckily, the tides seem to be slowly changing. Just last November, the first-ever White House Initiative on Women’s Health Research was launched, aiming to “unleash transformative investment to close research gaps, and improve women’s health.” The initiative could provide new pathways for progress, but only if we choose to walk through the doors it has opened. This doesn’t have to be some far-off White House agenda — I believe young women researchers should step up to seize opportunities like this and drive meaningful change. And as we chart the course of future work, I hope men join the conversation too.

Another example of progress is the 2021 removal of systemic biases once embedded in the Maternal-Fetal Medicine Units Network’s vaginal birth after cesarean (VBAC) calculator, demonstrating the power of advocacy in healthcare. The network’s VBAC calculator, a medical algorithm designed to predict the likelihood of having a successful vaginal birth after a prior cesarean delivery, originally offered a lower probability for Hispanic and African American women. That led to concerns the calculator could encourage giving patients of color fewer opportunities for vaginal births and instead providing more unnecessary C-sections, which, like any surgery, comes with risks. Researchers and doctors started to question this disparity and demanded change, ultimately leading to the algorithm being redesigned without race- and ethnicity-based factors in 2021. As a result, pregnant people of all backgrounds are now being served better, with medical decisions that reflect a more accurate understanding of their health needs.

When I gave a talk on disparities in women’s health at the Rise summit, it felt like we were all stepping into a shared space of vulnerability. I saw nods of recognition ripple through the audience, particularly among the girls. Boys, too — some of whom had never heard of conditions like endometriosis — lingered after the talk, their questions hesitant at first, then bolder as they realized I was more than willing to discuss what they didn’t know. It struck me how foreign this topic was to the boys I spoke to, how far removed it was from their experiences, yet here they were, wanting to understand.

At the Rise summit, I saw a certain power in our youth — our ability to embrace difficult topics regardless of how closely connected we are to them. We are teenagers, yes, but our willingness to raise our voices are rooted in a shared understanding that change is not only necessary – it’s inevitable.

But this power isn’t confined to the young; it belongs to all of us. We each hold the potential to push for change, to ask the questions that need asking, and to demand that women’s health is given the attention it deserves. The shadow cast by the thalidomide scandal still lingers, and for too long, the medical field has operated under a one-size-fits-all model. However, when patients continue to ask questions, not only do they advocate for themselves, but doctors refine their understanding, and researchers push the boundaries of knowledge. The only way through the dark is with open eyes and open minds.

Originally Appeared on Teen Vogue