I Pledge to Trust Women

3 uterus owners wept in my clinic, one of them was me

Disclaimer 1: The terms “women” and “uterus owners” are sometimes used interchangeably for the ease of reading and writing. But my position is this: the terms “uterus owners” or “people with uteri/uteruses” are used because not all those who have a uterus identify as women. The organ itself doesn’t and shouldn’t define a person or their gender.

I desperately want to become the same person in and outside my exam rooms: a relentless feminist patient advocate. But the healthcare system forces me to participate in and therefore perpetuate medical misogyny.

It makes me feel trapped.

It makes my patients feel trapped.

Julie is a 45-year-old woman with severe rosacea which hasn’t responded to the kitchen sink I’ve prescribed her. Finally, we decided it was time to try Accutane®, a great medicine for rosacea.

There is just one problem: Julie has a uterus. For now.

Accutane® can cause birth defects, the bad kinds. As a result, the FDA requires prescribers to use a monitoring program called iPledge to keep track of every patient.

Why is it called iPledge? The full name is “iPledge to not get pregnant.”

There are worse things to pledge to, some might say.

Here is the catch: it doesn’t work, except for preserving medical misogyny.

Any person of “childbearing potential” is required to have two negative pregnancy tests 30 days apart before they can get their first prescription; and each month, they must pee in a cup to prove non-pregnant again, answer a quiz of multiple-choice questions on iPledge within 7 days of their negative pregnancy test BEFORE they could pick up their medication. AND these pregnancy tests must be conducted at a medical facility or laboratory that meets specific standards set by the iPledge.

There is more:

-abstinence doesn’t bypass the requirement for pregnancy tests, no matter how young the patient might be or what their sexual preferences are

-uterus owners who don’t have sex with men (therefore aren’t at risk for pregnancy) can’t bypass the requirement for a pregnancy test

-home pregnancy tests don’t count

-and the patient’s word doesn’t count

Meanwhile, a man walks into the office and walks out with an Accutane® prescription.

So here I was, forced to talk to Julie about birth control methods and endless pregnancy tests required by iPledge.

“So long as you have a uterus and are still having periods…” I started.

“Well. I am finally getting a hysterectomy.” She said the word “finally” but her voice didn’t sound excited or relieved. It sounded…complicated.

“Can I ask why you are getting a hysterectomy?” I cautiously proceeded.

Here is a preview of her story:

Young women = baby vessels…for men.

Julie has suffered heavy bleeding and severe menstrual pain for over 30 years. She had wanted her uterus removed since she was a teenager. But she waited until she had a child before she asked her doctor for a hysterectomy.

“Too young.”

“Your child might need a sibling.”

“Your husband might want more kids.”

They told her.

How about what she wanted?

Prior to the feminist movement in the 1970s, states like Georgia, North Carolina, and Virginia required the husband's co-sign for women to undergo voluntary sterilization. Today, still less than 50% of postpartum tubal ligation requests are met.

Though no state mandates spousal consent anymore in the 21st century, in 2011, 45% of American Ob/Gyn physicians would still discourage a woman with only one child from getting sterilized. And 59% would prevent a 26-year-old woman from getting sterilized if their husband disagreed. And this number dropped to 32% if the husband agreed. Today, a doctor’s personal concern that the patient is “too young” or “will regret it later” is still a major barrier for a woman of “reproductive potential” to become sterilized.

And god forbid if the uterus owner requesting sterilization is not married yet! Because “what if their future husband wants kids?” Nothing says “you don’t matter” more loudly than taking the opinion of a person who doesn’t exist yet more seriously than your words.

“Clearly, my pain wasn’t ‘bad enough’ for them to do something about it,” Julie said. Her eyes were becoming moist.

“Never,” my medical assistant doesn’t usually say much in the room, but today, she couldn’t stay silent anymore.

“When I had uncontrolled bleeding to the point of needing blood transfusions and passing out, I begged the doctor to give me a hysterectomy. They refused…until I almost died.”

She went on to tell the story of her near-death experience when she ended up in the hospital multiple times a night, bleeding out. “Before I passed out, I remember hearing my husband yelling at the doctor: is it better for us to not have more kids or for our kids to have a dead mother?”

Her voice was shaky and quieter than usual. But we heard her loud and clear.

The real choices are not to live or to preserve the ability for pregnancy…

…but to be a full person or merely a collection of organs attached to a uterus.

Older women = owners of a useless organ, said men.

Recently, decades after the onset of her troubles, Julie developed severe lower abdominal pain — a different type of pain than what she had been having. Her doctor ordered a pelvic ultrasound. Many vagina/uterus owners know the joy that comes with that…

In severe pain, she endured the probe in her vagina pushing on her cervix over and over again.

“I knew it was bad news when the doctor called me within an hour after the ultrasound,” Julie told us.

He told Julie on the phone that there was some “suspicious shadowing” in her imaging which could represent a uterine tumor and scheduled her for a biopsy to rule out cancer.

“What did the biopsy say?” I was nervous for Julie.

“Well. Nothing!” Julie put her palms up and shrugged, “But he said it might be a false negative because the ultrasound looked bad enough, plus I was ‘too old to have more kids',’ so he is going to perform a hysterectomy and send my uterus to pathology for more testing.”

A long pause followed. Many questions and thoughts came to my mind, congested by rage, confusion, and hurt.

“So…they might be taking out a whole organ ‘just to see’?” My medical assistant broke the silence again.

“Don’t get me wrong,” Julie explained, “I want a hysterectomy. I have always wanted a hysterectomy. But…I didn’t want to wait until I maybe have cancer to have it taken out!” Julie choked up and tears ran down her cheeks.

I perform biopsies all the time in the clinic for skin lesions. And I almost always wait until the pathology report comes back to confirm the diagnosis of skin cancer before I cut it out completely, unless, of course, the patient wants it off for other reasons.

But not when it comes to the uterus.

According to the CDC, on average, more than 1 in 7 women in the United States have had their uteri taken out. While this number is only 1 in 36 for women younger than 45, it drastically increases after that. By the time women are 75, almost every other woman walks around without a uterus!

As the relics of the racist history of hysterectomy abuse clings to our time, it’s no surprise that compared to White women, Black women are more likely to have undergone a hysterectomy, while much less likely to have done so through minimally invasive methods.

A recent study found only 0.6% of patients who had a hysterectomy for abnormal bleeding patterns after 40-45 years of age, a concern for endometrial/uterine cancer, actually had a biopsy confirming cancer before the surgery. The study goes on to call for “clear algorithms or valid risk prediction models” to assess the risk for uterine cancer before uteri are taken out unnecessarily.

What does this all mean?

While younger women couldn’t beg loudly enough to have their uterus taken out to ease their suffering or fulfill their desire for permanent birth control, women who are deemed no longer fertile or too old to have kids are having their uteri taken out left and right.

Imagine, just for a minute, if we are talking about testicles:

If 1 in 7 men have had an orchiectomy,

and every other older man who can’t produce viable sperm walks around with no testicles.

But only 1 in 167 people (which might be 1 one 334 testicle) actually need their testicles removed due to cancer.

Do you reckon we would have had “clear algorithms or valid risk prediction models” YESTERDAY?

We would probably have cured cancer altogether!

This uterus exceptionalism is deeply misogynistic.

And THAT needs to be cut out.

Women can’t be trusted, said men.

On June 24, 2022, the US Supreme Court overturned the constitutional right to abortion. This was followed by an abrupt uprise in the number of women seeking permanent contraception.

Yet many medical insurance such as Medicaid still won’t cover voluntary sterilization unless a specific consent form is signed by a patient at least thirty days before when the procedure.

Why? To prevent regret.

“She needs time to think about this. Really, really think about this.”

This very assumption that uterus owners are susceptible to making “rash decisions” and then coming to regret it days later is absurd. Besides the fact that very few women regret their decision for sterilization, such an assumption underestimates and disrespects women’s ability to do what’s right for their bodies.

And this misogynistic, unethical assumption penetrates all aspects of reproductive health.

Back to the case of iPledge, the very reason why we monitor women mandatorily is because we don’t trust that they would “comply” with the rules, as if they wouldn’t understand the risks of birth defects.

Newsflash: women, as the predominant caregivers in families and societies, have more to lose if their children have birth defects.

If we don’t trust women would be responsible, shouldn’t we monitor men, too?

Why don’t we count their Accutane® pills to make sure they haven’t sold them?

Why don’t we monitor their hemoglobin to make sure they haven’t donated blood to the Red Cross so that people who are pregnant won’t get their Accutane®-containing blood and have their babies messed up?

How can we be sure they have been responsible?

Ah yes.

We take their word for it.

There were three uterus owners in my clinic during that visit: Julie, my medical assistant, and me. Two of them were now crying.

I had no words to comfort them.

I couldn’t give them a voice against medical misogyny.

I was powerless against the baseless, arbitrary, unethical mandates that forced me to not take women’s words for it.

I felt complicit.

The computer screen flickered in the exam room. The iPledge website logged me out after 30 minutes of inaction.

I turned to Julie and asked her if I could give her a hug. She said yes. And my medical assistant joined in.

As I felt the slight shaking of Julie’s shoulders and the shallow breathing of my medical assistant, my eyes watered, too.

In this moment, we pledged support, understanding, and compassion for each other.

In the countless moments that came before it and the countless moments that will come after, there is only one thing left to pledge:

The pledge to trust women…

…as the owners of our organs, bodies, AND voices.

Disclaimer 2:All patient stories have been significantly altered in patient-identifying details to protect confidentiality.