In the midst of the global pandemic and societal unrest that characterized the summer of 2020, Congresswoman Abby Finkenauer and the House Endometriosis Caucus pushed through an amendment that would double the amount of funding for endometriosis research in the National Institutes of Health (NIH) budget. Endometriosis is a condition where tissue similar to the endometrium, the lining of the uterus, is located outside of the uterus. It can cause numerous symptoms, but the hallmarks of endometriosis are abnormal periods and severe, often debilitating, pain. Approximately 10 to 20% of reproductive age women worldwide suffer from endometriosis, yet the condition has historically gone underdiagnosed and unrecognized. The average time from first symptoms to diagnosis is 10 years. This increase in funding is one reflection of a growing investment in women’s health research. Another sign of increasing investment is the movement towards equality in the representation of women in clinical trials.
In the September 2020 issue of the Yale Journal of Biology and Medicine (Focus topic: Sex and Reproduction) our authors explore women’s health, reproductive health, and fertility through multiple lenses, including studies on how ovarian aging and thyroid disorders can affect pregnancy and fertility. In a review of the current knowledge about endometriosis, García-Velasco highlights the various ways that endometriosis can affect reproduction and potential therapies for endometriosis and related fertility issues. While further research on conditions affecting the reproductive system is vitally important, a historical focus on fertility has in many cases hampered progress and investment in women’s health research, particularly conditions such as endometriosis.
For centuries, women’s pain has been dismissed by the medical establishment. Medical historian Jaipreet Virdi calls endometriosis an “invisible epidemic” because of the lack of visible symptoms and the pervasive prejudice against women’s pain in a predominantly male medical system. There was no name for endometriosis until the early 20th century, but even then, it was not the pain caused by endometriosis that caused physicians alarm – it was the threat that such a condition could pose to what was then considered the primary purpose for a woman’s existence: childbearing.
One possible, but not universal, symptom of endometriosis is infertility. Twentieth century physicians investigating endometriosis called it the “career-woman’s disease,” – diagnosis of endometriosis would likely not happen until a woman experienced fertility issues, and even then, the condition was blamed on the woman in question delaying pregnancy and not focusing enough on motherhood. This emphasis on infertility as the main consequence of endometriosis and dismissal of women’s pain contributed to the lack of investigation into potential treatments for endometriosis well into the latter part of the 20th century. To this day, infertility is still often emphasized as the most important consequence of endometriosis. For some women, this may be the case; however, as Abby Norman writes in her book about her own diagnosis with endometriosis “Ask Me About my Uterus,” medicine is “loyal to fertility above all,” even in cases where the individual has not expressed any desire to reproduce.
There is currently no cure for endometriosis. Treatments for the pain and other symptoms can range from pharmaceutical to invasive surgeries, such as a hysterectomy. For centuries, preserving women’s fertility has been the end goal of all research into women’s reproductive health and in the case of endometriosis, fertility has been emphasized over treating or eliminating the debilitating pain felt by those who suffer from endometriosis. While the greater financial investment and attention on endometriosis by the United States government represents great progress in the search for treatments and cures for endometriosis, for greater progress to be made in women’s health research there needs to be a decoupling of reproductive capability and women’s health and a greater understanding and belief of women’s pain.