*We have changed the interviewee's name in order to maintain her privacy.
No one should have to deal with painful periods. period.
Tea always had difficult periods, but it wasn’t until her junior year of college that she learned this was a symptom of a larger issue. The pain became debilitating, forcing her to stay in bed all day, until a day it was so bad that she was rushed to the emergency room, quaking in pain. She told the attending physician that she had missed her usual dose of painkillers that morning. He immediately attributed the intense pain to her own mistake, condescendingly scolded her, and walked out of the room.
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Tea paid $300 for the visit, a bottle of Midol, and returned home without any answers.
"No one should have to go to the emergency room for their period. It shouldn’t have to get to that."
Tea suffers from endometriosis–– a condition in which the tissue that makes up the uterine lining grows on other organs inside the body. Often, women with endometriosis have pelvic pain, pain with periods or sex, and can even have difficulty getting pregnant.
The median elapsed time from onset symptoms to an endometriosis diagnosis is 7 years.
Most women don’t get an endometriosis diagnosis for an average of seven years, and their symptoms are often lumped with those of IBS or other digestive issues. Oftentimes, a diagnosis doesn’t come until the pain is so bad that they have to go to the emergency room. If a black woman is experiencing pelvic pain, it is many times misattributed to other conditions like PID (pelvic inflammatory disease) or uterine fibroid tumors, making the diagnosis process even more difficult.
Tea spent years of being dismissed and thinking painful periods were normal. Finally after hospitalization, her gynecologist referred her to a reproduction clinic in her home state of New Jersey. As a black woman, walking into the clinic for the first time was not easy. In a pristine facility full of affluent white women trying to conceive, she immediately felt out of place and quickly realized that many endometriosis resources aren't helpful for women in her situation.
Most patients were there for IVF and Tea was not who they expected. Because she wasn't seeking out expensive fertility treatments, Tea told us the nurses were dismissive of her and confused by why she would want treatment if she wasn't trying to get pregnant.
“It was as if, until I was about to have a child, none of my pain really mattered”
The research online wasn't much better. Tea found that most resources for endometriosis are oriented towards women who want to have children and is rarely talked about in terms beyond fertility. The lack of resources, research, and information tells people with endo that their pain doesn't matter unless it's getting in the way of conceiving and fulfilling our societal duty of childbirth. “I just want to feel normal. Isn’t that valid?.”
"I just want to feel normal. Isn't that valid?"
The limited amount of knowledge and training surrounding endometriosis can often lead to misdiagnosis and mistreatment
The first steps in treatment for endometriosis are birth control and eliminating certain foods out of one’s diet. The next step is a huge jump: laparoscopy, an invasive and expensive procedure. During laparoscopy, a doctor looks in the abdomen with a camera and takes a sample of the suspected abnormality. Laparoscopy usually isn’t completely covered by insurance, which makes it inaccessible to most women.
Besides the two polar extremes for treatment, there aren't many alternatives doctors can offer. While endometriosis specialists exist, most of their private clinics don't take insurance leaving many women without medical treatment for their pain.
In Tea's case, treatment becomes even more difficult for her because she hasn't had penetrative sex yet. Gynecological tools are still one-size-(in reality doesn't)-fit-all and doctors often don't have anything they can use without causing her huge amounts of pain, an added barrier to a lot of her testing and treatment options.
“How can I literally not even communicate that I need help right now?”
“Never in my life [before] had I ended a phone call with a doctor and cried. [...] I was crying out of frustration. Like, how can I literally not even communicate that I need help right now?" –– Tea told us exasperated.
She became frustrated with putting her life in the hands of her doctors, and she wanted a sense of agency in the process. Alternative medicine was really her only option. Tea has tried things like the Livia, a small machine that you clip on your belt, as well as acupuncture, yoga, and weed. Since moving to Brooklyn, she’s been scouting out new OBGYNs, particularly younger women of color, who more commonly specialize in dealing with medical issues pertaining to other women of color, such as endometriosis and fibroids. She hopes that someone who more accurately represents her will not have the same unconscious bias and dismissive attitude as her current nurses and providers.
Through the years, Tea has found ways to manage her pain, sometimes in non-traditional ways. She has found solace in humor, specifically through endometriosis-related Instagram accounts. Her favorites, both humorous and informational, are @endo_black, @my_humorous_uterus, and @practical_endo. She also enjoys listening to the Sexually Liberated Woman podcast.
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Tea has faced many challenges in trying to treat her endometriosis, but she has kept a positive outlook by taking her care into her own hands. She has listened to her body and her pain, despite pushback from doctors. With proper care, trial and error, and a supportive community, Tea is finding ways to manage her endometriosis. She hopes that through sharing her story people will know that they are not alone and seek the care that they need.
Are you looking for a supportive endo community and need someone to talk to? Message us on ovee.me and we can find you the resources you need 😘