March is National Endometriosis Awareness month. According to the National Institutes of Health (NIH), “endometriosis is an estrogen-dependent disorder where endometrial tissue forms lesions outside the uterus.” Essentially, hormonal imbalances cause tissues that are already a part of the uterus to grow in places they are not supposed to be, damaging the organ and causing pain.
Endometriosis affects an estimated 10 percent of women of reproductive age, can cause severe pain and infertility, and has no known cure, according to a 2009 study by the NIH. Despite its prevalence and the impact of its symptoms, the only known way to diagnose endometriosis definitively is through surgery, and most treatments have side effects that make them unsuitable for long term use, according to the study.
The tissue growth associated with the condition causes pain during periods because the tissues bleed outside of the uterus. Although some women with endometriosis have no symptoms, the lesions can also cause pain during sex, and some patients have constant pain due to the condition, according to the Department of Obstetrics and Gynecology at the University of California, Los Angeles.
“In women without symptoms who are having surgery for elective sterilization (having their tubes tied), 1–7 percent will actually have endometriosis diagnosed at the time of their surgery, as will 12–32 percent of women having surgery for pelvic pain, and 9–50 percent of women having surgery for infertility. Endometriosis is rarely found in girls before they start their period, but it is found in up to half of young girls and teens with pelvic pain and painful periods,” the UCLA article said.
Despite the pain and significant symptoms associated with the condition, women see an average of seven health care professionals before being referred to a specialist, diagnosis takes seven years on average, and three-fourths of women are misdiagnosed, according to the Society for Women’s Health Research (SWHR).
Because surgery is necessary for diagnosis, the doctor needs to be relatively sure of the patient’s symptoms to propose it. The surgery involves taking skin samples of suspected lesions off the uterus. According to SWHR, doctors might try to treat suspected endometriosis with pain medication or birth control, but even improved symptoms with these treatments does not allow for diagnosis without surgery to verify.
As a result, getting a diagnosis is highly dependent on patients reporting symptoms accurately. The fact that the condition only affects people with uteri, and most people with uteri are women, potentially contributes to the lack of timely diagnosis because systemic bias against women makes them less likely to be taken seriously and they receive slower and less extensive treatment for the same symptoms. This can be a problem because period pain is so normalized and endometriosis symptoms are often dismissed, according to the SWHR.
Treatment can include surgery, birth control and pain medication, according to UCLA. However, endometriosis is a chronic illness, meaning there is no permanent cure. Once diagnosed through surgery, treatment for endometriosis often involves more surgery to remove lesions, which can leave scarring and requires follow up treatment.
Even diagnosed, endometriosis has a significant impact on quality of life. According to SWHR, the condition is “associated with risk for other chronic diseases, including several types of cancer, autoimmune diseases, asthma, and cardiovascular disease. Total productivity loss in employed women with endometriosis averages 6.3 hours per week … and the yearly total cost of endometriosis has been estimated at $22 billion in the United States.”
Additionally, “while endometriosis is one of the most common gynecological conditions, there is lack of awareness about the disease and its exact causes are still unknown,” the SWHR said.
Despite the pervasiveness of endometriosis and the lack of knowledge about what causes it or how to treat it non-invasively, only $10 million of the $32.3 billion budget for NIH research in 2016 went towards endometriosis research. This amounts to 0.031 percent of the total budget.
Overall, better diagnostic procedures are needed to help people with endometriosis, and more awareness of the symptoms is necessary for them to be taken seriously. This requires more awareness and research into the causes and treatments for the condition.