Years of excruciating pain, gaslighting, misdiagnosis, missed work, and depression. Endometriosis affects far too many women to be so misunderstood.
Endometriosis impacts one in 10 people born with a uterus in the United States and yet, on average, takes 10 years to diagnose. It occurs when the tissue that lines the uterus in preparation for implantation of a fertilized egg is found in other parts of the body. This tissue responds to the hormones that trigger menstruation, bleeding and attempting to shed each month. The result is pain, inflammation, and the formation of nodules, cysts, and scar tissue.
In September, I launched an Endometriosis Working Group (EWG) to better understand the disease, treatment, misdiagnosis, and what Connecticut can do to expand access to care. Upon learning of the EWG, many women have reached out to share their unique experiences, which are infuriatingly similar. One woman shared:
“I started having severe periods when I was in 7th grade. I’m 29 now and finally got a diagnosis of endometriosis in March of this year. I had to give up tennis, my dreams of being in the military, or any possibility of a career due to this illness. To top it off I spent over a decade being put on anxiety meds and being told it’s in my head instead of someone actually trying to diagnose my pain.”
The lack of knowledge among medical providers is in large part a result of the chronic under-researching of women’s health conditions. Additionally, women face sexism that delays diagnosis, including the normalization of female pain and period stigma. The intersection of sexism and racism means Black women face additional barriers including medical provider implicit bias, a legacy of abuse of Black women’s bodies, and a discriminatory belief that Black women have a higher threshold for pain.
According to the American Society for Reproductive Medicine, 50 percent of women experiencing infertility have endometriosis. For some, this diagnosis comes after years of being told the pain they were experiencing was in their head. For others, it comes after costly referrals for infertility treatments. One woman presented to the EWG that her lung collapsed in her early 20’s as a result of endometriosis. She was accused of being addicted to drugs.
Endometriosis is a full body disease, thought to have a genetic predisposition that is currently only diagnosed using a surgical procedure that identifies the endometriosis lesions. This poses many challenges, both financial and physical.
Birth control is often prescribed to treat the symptoms of endometriosis, and while it works for some, it is a Band-Aid approach to the disease. It doesn’t cure endometriosis, it just slows down the growth of endometrial tissue and in some, helps ease the symptoms. Currently, there is no cure for endometriosis.
If an individual agrees to or can afford a laparoscopic surgery to receive an official diagnosis and determine the extent of the endometriosis, they still may be in jeopardy. Unlike with cancer, endometriosis isn’t recognized as a subspecialty and so many OBGYNs can treat endometriosis without specialized training. Depending on the stage of endometriosis and expertise of the practitioner, an individual might undergo ablation surgery or excision surgery. Excision surgery is considered the gold standard but cost is a major barrier. Leading doctors equate the excision surgery for endometriosis to that of cancer surgery. A quick search of GoFundMe shows pages upon pages of women seeking financial assistance to relieve their pain.
Connecticut has some of the nation’s highest rates of health and economic disparities. Accessing endometriosis care, which can include expensive surgery and changes to diet, is a major barrier for many Black women.
Currently, about 12 percent of women with endometriosis eventually receive a hysterectomy. While a hysterectomy can relieve the symptoms of endometriosis, the condition can recur after surgery and the symptoms can persist.
Women deserve better. Endometriosis and the individuals it impacts have been ignored for far too long. This ignorance causes countless individuals to self-medicate, experience depression and anxiety, and contemplate or commit suicide. The Endometriosis Working Group will be making policy recommendations in the areas of education, training, and coverage in preparation for the 2022 Legislative session.
State Rep. Jillian Gilchrest (18th District) represents West Hartford.