With my right hand clutching my stomach, I warily raised my left hand and asked to go to the nurse’s office. I was in ninth grade, rushing through a final exam for science class when I was met with an indescribable, excruciating pain. I finished the test, defeatedly handing over the tear–soaked scantron to the school nurse and went home to try and make sense of what had happened.
After shakily confessing my symptoms to Google, I learned that my symptoms and experiences were almost identical to those in people with endometriosis, a painful chronic illness in which uterine tissue grows outside of the uterus. I learned that somewhere between 10% and 20% of cisgender women have endometriosis. It’s hard to know the exact epidemiological extent of the problem because, for those afflicted, painful symptoms are usually normalized and the road to diagnosis is often long and bumpy. On average, individuals with endometriosis have to wait seven to nine years after the onset of symptoms before getting an official diagnosis, lose about 11 hours of weekly work productivity, and experience a significantly worse health–related quality of life than those without endometriosis.
Confident and relieved at the promise of a diagnosis, I brought my research findings to my doctor. “I think I have endometriosis,” I told her. “No,” she told me back, “You don’t." I didn’t know whether or not I should trust her. I knew that I was experiencing unusually severe pain, but I also knew that I was only 15 years old and decidedly uneducated about reproductive health and medicine. I chose to seek out more medical experts and ask for additional opinions.
The nos that followed reverberated through my mind until they overpowered my search for answers. I didn’t receive a surgical diagnosis of stage 3 endometriosis until December 2019. Over seven years and countless visits to gynecologists’ offices, doctors furrowed their brows, offered their sympathies, and then reminded me that taking 800 milligrams of Advil as needed should do the trick.
Unsustainable and deeply flawed solutions were presented to me, with some doctors suggesting that my experiences were so radical that they must be untrue, or that my pain would probably lessen after childbirth. I was sold myth and misconception until I held them as my reality, forcing myself to believe that that my pain and symptoms were normal. In the middle of progressing physical debilitation and emotional exhaustion, my searing pain fell to the back–burner.
Navigating the world of undiagnosed or mistreated endometriosis has been shown to have debilitating effects on individuals. However, before I cite statistics that reinforce the theory behind the pain gap, I must note that as a cisgender woman, I cannot speak about the experiences of non–cisgender people in healthcare. This article is about my own experience dealing with endometriosis, and there is extensive work that needs to be done to include non–cisgender people in healthcare studies, including the ones I cite.
While severity and symptom type vary from person to person, gender–based misperceptions and biases pose serious threats on cisgender women’s health experiences and outcomes alike.
While the push to have more inclusive clinical trials for pharmaceutical development and medical advancement is valiant but ultimately falls short, it does not compensate for decades of systemic dismissal of cisgender women's pain. The Office of Research on Women’s Health was not created until 1990, and before that, most clinical studies and subsequent medical recommendations were sourced from the cisgender male perspective. It's clear that to effectively address gender disparities in health experiences and outcomes, reducing the pain gap is a crucial part of the process.
While endometriosis is one example of the gender–based pain bias, the phenomenon poses several barriers in the quest for equity in health care. On average, cisgender women’s complaints of pain are dismissed as psychological while cisgender men’s complaints result in more thorough medical investigations, with data being nearly non–existent for non–cis people. At a micro level, the cost of these seemingly small transgressions may not seem significant, but when examined at a larger scale, the findings show substantial cause for alarm. When cisgender women’s pain is written off, they are at greater risk for developing depression or anxiety, infertility, and endometrial cancer. The combination of lost productivity and increased medical spending costs economies across the globe billions of dollars annually. However, the data on the ripple effect of the pain gap focuses on the gender binary between cisgender women and cisgender men, and unrightfully excludes anyone who doesn't fall into these two categories.
History is riddled with gender disparities whether it be in the form of lesser pay or poorer health outcomes. To create lasting change in this issue would require persistent cross–sector collaboration to address gaps in research and communication and reduce experiences of discrimination and stigma. Whatever differences are determined, they should not translate to disparities in how much preventable pain is endured by an individual, nor should they increase that person's risk of illness and death.
Ninth grade was the first time I felt the push to learn more about my experience, and though I still have much to learn about the illness, I’ve found that increasing my knowledge by having access to accurate and current resources has been profoundly empowering. As each person’s experiences vary, the way in which we communicate and respond to those narratives matters. For patients, especially those vulnerable to medical mistreatment, being able to confidently articulate a painful experience in the face of distrust is an essential component of becoming a better self–advocate. The fight for equity in health care is a part of the larger push to empower women, and should be included as we work to observe women’s history month.
Editor's Note: This piece was updated to acknowledge its focus on the negative health outcomes of cisgender women. Current statistics fail to represent the experiences of transgender people, who are routinely disregarded in medical research and healthcare settings. 34th Street is continuously growing and improving to become a more inclusive publication, and we regret any errors we made in using incorrectly gendered language or speaking over trans communities.