Cherie Vu is surprised she hasn’t ruined her liver from all the Tylenol she was taking, just so she might tolerate the pain of her periods.
The recent Georgetown University graduate said she wouldn’t be able to sit through class without a 5-pound hot water bottle, along with pain-relieving patches — her “go-to” for the pelvic and back pain she persistently felt.
As a high-schooler, artist and writer Rowan Walsh would regularly miss a week of school because of their periods, which brought debilitating migraines and nausea, as well as an abnormal amount of bleeding. At one point, Walsh experienced a gynecological hemorrhage; the bleeding was so severe their mother thought Walsh had a miscarriage.
Samantha Denae’s bleeding was so intense she would need to wear two pads at a time during her periods. She was first diagnosed with endometriosis at 24 and, as she got older, her periods could last as long as 90 days. For the first few days of her cycle, she said, she wouldn’t be able to keep anything down, including water.
All of them have endometriosis, a disorder in which the tissue that normally lines the inside of the uterus grows outside of it. All of them spent years in severe pain, visiting various doctors and cobbling together makeshift “solutions” to help manage symptoms.
Their experiences were reflected in a viral BBC article, on 23-year-old Hannah Lockhart, whose pleas for a hysterectomy to help treat her endometriosis sparked a conversation among endometriosis patients and autonomy advocates.
Lockhart told the news outlet that her condition had degraded to the point that she could barely walk. But when she begged her doctors for a hysterectomy — the complete removal of the uterus — to help remedy her chronic pain, Lockhart said she was refused the procedure because of her age and lack of children.
“It’s an experience I’ve heard women describe many times over,” said Kate Seear, an associate professor of law and health at La Trobe University in Melbourne and author of the book, “The Making of a Modern Epidemic: Endometriosis, Gender and Politics.”
“The idea that we operate in a system where doctors push biological motherhood above all else is troubling.”
“We know from research with women about their experiences with healthcare that not only are younger women, in particular, refused hysterectomies, younger women often also say that doctors tell them that they should be prioritizing the preservation of their fertility and trying to have children,” Seear said. This is often the case, she added, even instances in which they hadn’t expressed any interest in having children.
This response is rooted in a long history of the medical establishment trivializing and dismissing pain reported by women, Seear said, but it also reflects stereotypical views about the proper function of women and women’s bodies: that their most important function was to have children, that women who weren’t having children were failing in some way, and that “the primary concern” for doctors was to ensure this ability, even if the women themselves didn’t consider it a priority.
This holds especially true for White women, Seear added. Research shows that doctors are more likely to give Black women hysterectomies than their White peers, even in cases when the woman doesn’t seek it and it is not medically necessary.
There is no cure for endometriosis, and despite its prevalence, the condition has been underdiagnosed and misunderstood among medical practitioners for generations. Because of this, many people with the condition will go years before receiving a correct diagnosis.
The result, Seear said, is that many people with endometriosis develop a “highly sophisticated” understanding of the condition — including knowledge of new theories and treatments — to help advocate for themselves. Seear, who has endometriosis, added that it is not unusual for their knowledge to rival or surpass that of their general practitioners, who often serve as gatekeepers to seeing a specialist.
There is some disagreement among the endometriosis community about the efficacy of hysterectomies, which can eliminate endometrium growth in the reproductive organs but won’t impact growth that spreads to other organs.
Excision, the surgical removal of endometrium tissue, is increasingly touted among some researchers and medical professionals, including the Center for Endometriosis, as the “gold standard” for endometriosis treatment.
But Kristyn Brandi, a obstetrician-gynecologist and fellow with the American College of Obstetricians and Gynecologists, said hysterectomies are still seen as the “the end of the road” for many people with endometriosis, even though the procedure doesn’t guarantee that the endometriotic cysts won’t show up in other organs, like the bladder. That’s because as long as there is a hormone that could stimulate the growth of those cells, the cysts can come back.
She noted that research shows patients under 30 years old are at a higher risk of regretting procedures that hinder their ability to have biological children than those who are older, which may discourage some providers from moving forward with hysterectomies or other kinds of sterilization.
But, as Brandi sees it, her job is to focus on the individual in front of her: their specific wants, needs and concerns.
“I want people to be making the best decisions that they can, right then and there, with the best information that they have,” she said.
“My patients are the experts, and I always want to make sure that there’s not denied care because of my own biases or my own thoughts about what fertility looks like.”
Denae, diagnosed with endometriosis at 24, is now a full-time endometriosis advocate and educator. She said she did want a hysterectomy at one point, but she’s glad her doctor insisted she look at other options as well.
Denae’s doctor, a Black woman like her, was concerned that she was too young to have a hysterectomy, which she said initially frustrated her. But Denae followed her advice, eventually deciding to ease off on birth control, which she suspected had made her condition worse.
She credits that decision, alongside larger lifestyle changes, with greatly improving her health and well-being.
These changes aren’t one-size-fits-all, an indication of how complex and frustrating treating endometriosis can be for many patients.
Vu, the Georgetown graduate, sought excision surgery. She said one doctor was reluctant to perform the procedure on her because of the high risk of scarring on her fallopian tubes and ovaries, which could prevent future pregnancies. Instead, Vu’s doctor recommended she take hormonal birth control, which gave Vu intense migraines.
“That felt like an extremely unfair position to be put in,” Vu said. “I’m not going to choose between children and a lifetime of pain.”
This emphasis on biological childbearing is also a “limited and narrow” way of thinking about parenthood, Seear added.
This rings true for Walsh. A queer, nonbinary artist and writer living in South Wales, Walsh knew from an early age that they weren’t interested in bearing children, but they were open to adopting. When Walsh expressed this to their former OB/GYN, he didn’t seem to listen, insisting that they might change their mind.
Walsh is finally seeing a specialist who they trust and not only has the knowledge and ability to treat them, but trusts Walsh’s judgment. Walsh now is on a waiting list for a hysterectomy.
“If you don’t live with the condition, you don’t understand the desperation,” Walsh said.
“You don’t understand the willingness to do literally anything to help you. And if my specialist believes this will help me even slightly — and he does think it’ll help me massively, and so do I — then I’m going to trust him.”