I am one of the endo sufferers. 

As one gynecologist explained to me, endometriosis spreads in the body much like cancer does. It primarily affects the female reproductive system, when the tissues that normally line the uterus—the endometrium—grows outside of it, often on the ovaries, fallopian tubes, and pelvic lining. The tissue can also grow on organs: on the bladders, bowels, kidneys, and on rare cases, on the lungs and brain. Just like in the uterus, every month the displaced endometrial tissue acts as it’s engineered to behave, thickening, breaking down, and bleeding with each menstrual cycle. Since this tissue cannot shed out of the body, it gets trapped, inflamed, causing immense pain and, over time, forms adhesions that glue organs and pelvic tissues together. 

The disease usually presents with pelvic pain, painful and heavy periods, bowel and urinary disorders, chronic fatigue, and immense nausea. It is the leading cause of infertility, which means it falls under the domain of reproductive health and gynecologists, even though increasingly numbers of endo sufferers do not, or don’t want to, consider their fertility options. Yet, even if the experiences of endometriosis is largely one of pain, endo sufferers often do not—or are unable to—receive a diagnosis unless they are encountering infertility issues. 

As historian Cara E. Jones argues, there appears to be a rift between the social perceptions of endometriosis, which centers on the individual, subjective experience of pain, and the medical theorizing of endometriosis as disordered female biology.

My Research

In my research, I argue endometriosis is an invisible illness, one that tends to be unseen by medical experts—sometimes literally, as diagnosis is made by cutting into the abdomen and extracting tissue to send to the pathologist, who then confirms the presence of endometrial cells. For decades it was also a disease invisible in our society, in that most people experiencing the agony of the disease were dismissed, their pain deemed irrelevant, and their suffering chalked up to simply “being a woman.” 

My project, tentatively titled Tangled Tendrils: A History of Endometriosis investigates how endo sufferers’ sensations of pain and disability are dependent on their construction and negotiation of embodied knowledge within the clinical space. That is, for the disease to be taken seriously as a medical condition (rather than an imaginary, gendered “hysteria”) requires a reconfiguration of how we understand “invisible” illnesses.

Recently, I’ve learned of a 2019 study in British Columbia and Alberta that concluded that East and South East Asian people were 8.3 times more likely than whites to have “a previous diagnosis offstage III/IV endometriosis before referral), 4.1 times more to have an endometrioma on ultrasound, and 10.9 times more likely to have stage III/IV endometriosis at the time of surgery. That is, moderate-to-severe endometriosis was more common in women with East or South East Asian ethnicity than any other group. The study investigated data “from women presenting with pelvic pain and/or endometriosis who were younger than fifty years of age, not menopausal, and who completed a physical examination and ethnicity questionnaire.” The study also found that East and South East Asian women reported less pain and better quality-of-life upon questioning, which seems to be contradictory. Other studies indicate that South Asian people are also prone to endometriosis.

Being South Asian myself, I’ve become interested in studying how and why endometriosis affects this group of people.

How does South Asian cultural practices affect conversations and experiences of the disease?

In many South Asian cultures, it is taboo to discuss menstrual cycles, pelvic pain, or even women’s health more generally. Even any abnormal health conditions or disabilities are stigmatized, thus preventing many sufferers from seeking out proper medical assistance. In some South Asian cultures, however, heavy bleeding is considered a sign of a healthy fertility, while in others, it was unfavorable for an unmarried woman to reveal her pelvic issues as it would hamper her ability to receive a marriage proposal. 

Are you South Asian and suffering from Endometriosis?

I’d like to learn from you.

If you’d like to share your story or participate in an oral history interview, please fill out the form below. My scholarly promise is to respect your experiences, hold space for you to be vulnerable, and to share your story as much or as little as you wish.