BLEED: Destroying Myths and Misogyny in Endometriosis Care

by Tracey Lindeman

Endometriosis was first described in literature nearly four thousand years ago and was officially named in the mid-1920s.10, 11 Birth control was first approved for the treatment of endometriosis in 1957—and, well, not much has happened since then when it comes to new treatments. We’re told to take birth control and hope for the best. Or maybe get pregnant? I hEaR iT’s a CuRe.

When we get our periods, we’re taught that pain is intrinsic to the female experience and therefore doesn’t matter.

Whenever we try to exercise choices about our own bodies, we are penalized by discrimination. Abortion? Don’t be so promiscuous. Gender transition? You might change your mind. Having a child? Excellent! Unless, of course, you are too young, too old, too fat, too poor, too disabled, too Black or brown. Not having a child? Well then, you’re just selfish.

Because our world has been fed the script that female existence is defined by pain—periods, childbirth, sexual violence, plain old misogyny—we are expected to tolerate greater amounts of suffering.

“Women with endometriosis present a threat to medicine’s claim of knowledge of the body, and [. . .] instead of acknowledging the inherent limitations of androcentric medical knowledge, fault is established within women.” There it is. Instead of admitting the system is not calibrated to give endometriosis patients the care they need, actors within the system shift blame and responsibility onto patients themselves, and then hate it when we take the reins.

What researchers do know is that there is some kind of link. While endometriosis may never be officially categorized as an autoimmune disease, the immune system appears to be deeply involved in this illness.

Endometriosis is so deeply aligned with whiteness that Black women with pelvic pain have for decades been consistently misdiagnosed as having pelvic inflammatory disease (PID), which is caused by sexually transmitted infections.240 The emergence of PID as a catchall for Black gynecological problems confirmed a bias that society had held since the antebellum era: that Black women were sex-crazed “jezebels” (a bias has also been used to justify sexual violence against Black women).241 We haven’t escaped the racism sown into Black women’s gynecological care. In fact, PID misdiagnosis in Black women is still prevalent today, more than forty-five years after Chicago OBGYN Dr. Donald Chatman’s discovery that at least one-fifth of those diagnosed with PID actually had endometriosis.

hormonal contraceptives don’t actually control endometriosis at all. They merely mask the proliferation of the disease while reducing some symptoms.

They don’t even stop the disease from progressing, because endometriosis doesn’t solely rely on systemic estrogen: it makes its own supply.

Endometriosis is a disease that turns star athletes into pill-poppers, straight-A students into high school dropouts, people with rich social lives into recluses. We don’t lose our quality of life. We are robbed of it by a system that refuses to understand, believe and treat us.603

All pharmaceutical treatments currently available are palliative, meaning they do not reduce or cure the disease but rather work to make the patient more comfortable.608 For many people, prescription drugs have little effect. The most helpful intervention is excision surgery, as it physically removes diseased tissue from the body.

Routinely encountering these kinds of pain changes our relationships, our goals in life, our bodies and our brains. It compromises our ability to love being alive, to enjoy sex, to make and keep friends, to live up to our fullest potential. We try to make the best of things, only to have our resilience held against us by the people around us. If things are as bad as you say they are, then how can you possibly work, go to school, travel, make art? But when we complain, we are dramatic attention-seekers or self-absorbed narcissists. For so many people and for so many reasons, chronic pain becomes a part of how we are perceived by others and even how we perceive ourselves.

Despite the seriousness of this disease, a lot of people with endometriosis have excellent, if morbid, senses of humor, and many try to remain optimistic and positive and hold onto life as best they can. In an endless dark tunnel, we learn to be our own lights.

Consider there are about 168 million AFAB people in the U.S.635 If we use the stat that 10 percent of them have endo, that means there are potentially 16.8 million endometriosis sufferers in the U.S. However, it seems only 7.6 million cases have been diagnosed,636 so let’s just use that number for the sake of this argument. At $20 million in NIH funding, that is $2.63 of funding per confirmed case for one of the most painful human conditions that exists.637 If the $26 million had actually materialized, it would have been $3.42 per sufferer.

As journalist Rachel E. Gross writes, “[Endometriosis] suffers from a branding problem: It falls into the abyss of ‘women’s diseases’ (overlooked), diseases that don’t kill you (unimportant) and menstrual problems (taboo). Researchers often call endometriosis ‘benign,’ as in noncancerous—but doing so, Dr. Griffith believes, lessens the seriousness of a common, painful disease.”648

Our societal and research-backed obsession with avoiding mortality means we don’t look at morbidity—the act of suffering—which is the defining experience of endometriosis.

I think of this funding ignorance as an invasive weed that’s impossible to rip out and which never dies, not even in the dead of the coldest Canadian winters. This weed looks a lot like the lack of political and institutional will to change outcomes for women and others with marginalized genders. This invasive species is the lack of concern for our pain, even less concern for our pleasure and a complete lack of empathy for entire lives being destroyed. This weed is misogyny, and until we band together to kill it, funding for endometriosis will always look like a rusty collection plate with a hole in it.

Wouldn’t it ultimately be cheaper for the healthcare system to send an endo patient to an excision specialist sooner, rather than have them “drain” the system by seeing a GP a couple dozen times, then get multiple ultrasounds, then have one ineffective surgery, followed by another more effective surgery—all on the taxpayers’ dime?

A 2007 study in the U.K. showed that even back then, a third of women saw their GP at least six times before being diagnosed, and that although those GPs frequently requested their patients do ultrasounds, said ultrasounds only helped diagnose endo 10.6 percent of the time.

Yes, you and I have suffered enormously. But suffering doesn’t have to be everything. We can’t forget to live.