On the list of conditions kept by the National Institution of Health, Endometriosis is one of the least funded— it is listed as number 276 out of 288. Despite the fact that women around the world suffer from the disease, it goes widely unnoticed and understood. Most recently, the US Government has chosen to cut funding for endometriosis research.
7.6 million women suffer from endometriosis, and most lack the resources and treatment necessary to lead a life where the disease is not crippling, agonizing, or debilitating.
Endometriosis is a severe condition in which endometrial-like tissue grows outside of the uterus. This can lead to inflammation and scarring, horrific periods, and ultimately and often, infertility. Symptoms may also include irregularity in the menstrual cycle and pelvic pain. This makes endometriosis not only agonizing but life-altering.
Patients can undergo surgeries and see a wide variety of doctors for treatment, but insurance won’t cover most of the costs. Most medical professionals don’t have a surefire answer or a cure.
Despite the rising numbers of women living with the condition and endometriosis’ crippling symptoms and consequences, the National Institution of Health only endeavors to spend around $6 million this year in funding. This is a decrease from four years ago and works out to be about $1 per patient.
The disease is misunderstood and under-researched as well—largely due to a lack of funding that would promote research and treatment. Instead, many women are simply left without answers, feeling as though their condition is downplayed.
In the United States, there are estimated to be about 200 endometriosis specialists, according to a surgical program director of the Center for Endometriosis in Atlanta, Georgia. Most of these specialists can be found in urban areas. For women, this means help can often be cities if not states away.
Research from the 2017 Journal of Managed Care & Specialty Pharmacy shows that on average women lose 5.3 hours of workplace productivity per week when they are actively dealing with endometriosis. Likewise, according to a 2013 Human Reproduction Study, 51% of women saw their job suffer while dealing with endometriosis.
In the last decade, the disease has barely advanced. The same theories made since the first documentation of the disease, still stand, but there has been little new research popping up on potential cures or more stable treatment methods.
In the 1920s, America was a leader in research on endometriosis. Since, America has rapidly declined both spending and attention when addressing the common, incredibly painful disease.
In addition to stifling career and education, endometriosis also has an effect on relationships— both romantic and otherwise. With flare-ups coming sporadically and often, women suffering could have a difficult time maintaining social aspects of life.
With misunderstanding and the pegging of endometriosis as simply “a bad period” and not a crippling disease, it is clear that the narrative must change surrounding endometriosis so that we can put more emphasis on studying and understanding its consequences and finding a cure.