BLEED: Destroying Myths and Misogyny in Endometriosis Care

by Tracey Lindeman

There are, according to the World Health Organization, 190 million islands on this planet: people with endometriosis. The real figure is probably double that; about 10 percent of people assigned female at birth are said to experience the disease,1 and there are about four billion of us in the world.

So often we are told to lie back and take it. We must accept the things we cannot change, lest our anger consume us. But why not be consumed? There is a certain utility in consumption. When focused, anger can be a catalyst and an engine for change. The systems that oppress us benefit from our silence and compliance, and they make us complicit in our own abuse by forcing us to engage on their terms.

My point is, reproductive freedom isn’t only about abortion and deciding whether to have a child, but also about deciding to never have children and allowing that to be a legitimate, uncontroversial option for people.

!!!! SPEAK IT LOUDER FOR THOSE IN THE BACK

So we become even more engaged in getting to the bottom of our pain by doing research and joining online groups where thousands of people share their own horror stories. That makes you aware of the unfairness, and that makes you mad. But if you challenge your doctor, they think you’re uncooperative and maybe even mentally ill. Maybe you’ve been exaggerating this whole time. The more you press, the less it seems they want to help. And so you start looking for other doctors who might give you answers. The ultimate cruelty is that the more you get passed around, the more diffuse your paper trail becomes, until there is no institutional memory about you at all—except your own memory. But, of course, you cannot be relied upon to tell your story faithfully and accurately. Each new doctor wants to send you for the same tests so they can see the results for themselves. If you are tired just reading this, imagine what it’s like to live it.

!!!

In 1948, Joe Vincent Meigs, one of the most influential—and notorious—figures in endometriosis, told the American College of Surgeons that endometriosis would lead to the decline of the white race. The New York Times ran an article the night of his eugenics-tinged October 20 speech, its headline blaring “SOCIAL ILL IS LAID TO ENDOMETRIOSIS: Women’s ailment restricting the propagation of intelligent class.”238 The article explained Meigs’s view that because the disease was so prevalent among educated white women who delayed marriage and childbearing until they became totally infertile, it was only a matter of time before civilization declined.

what in the actual fuck

On her way home, Lepage thought about the encounter. “The thing that stood out to me the most was like, unless I was trying to conceive, no one even cared about bleeding and pain,” she tells me. “It’s like, ‘We don’t care about anything that has to do with your daily life and quality of life. It’s your job as a woman to procreate, and—oh my God, if you can’t procreate, then it’s a problem. Sure, we’ll take that seriously. But otherwise, eh, who cares?’” She hated how easily the script was flipped, how those magic words—“I want a baby”—transformed her doctor.

Relevant to Pincus and Rock’s decision to use Puerto Rico as the pill’s testing ground is the fact that between the 1930s and 1970s, Puerto Rican women were sterilized in droves—many against their will. This was made possible by U.S. colonialism, which since the 1898 Spanish-American War invasion has dispossessed the majority of Puerto Ricans of their land, resulting in widespread poverty.

Never knew this- this is terrible

Canada revealed that at least twenty-three women died from clots related to these two brands of birth control, both of which contain drospirenone, one of the newest progestins.495 Deaths from these two drugs were also reported in the U.S. around the same time. Drospirenone carries a blood clot risk one-and-a-half to three times higher than other hormonal contraceptives made without it.496, 497 Because of the clotting issue and the related risks of deep vein thrombosis, stroke, heart attack, pulmonary embolism and loss of gallbladder, Bayer has been sued or is actively being sued by countless people and class actions; already, more than 19,000 suits have been settled.498 More than $1.6 billion had been paid out by 2013.499

fuck you Yas- you coulda warned me

if you have a doctor in the U.S., look up how much money and in-kind gifts they have received from drug and medical device companies on OpenPaymentsData.cms.gov.

This is such an interesting tool!!

LaPerle knows this reality all too intimately. “I was a competitive athlete until I was sixteen. I was expected to perform in every area of my life, but as things were progressing, I was falling further and further behind,” she says. “There’s a point where you mourn the person you used to be. Like, I’ve lost a lot of people in my life to death, and the grieving is the same—except you’re grieving for yourself, the person you used to be or the person that you could be. People judge you.”

GOD I FEEL THIS SO DEEPLY- it's like what happened and changed all of a sudden??