Medical gaslighting epidemic in women’s health, myths of ‘period pain’ require academic discussion

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Ladies for Change hosted UC Berkeley’s first Menstrual Rights Symposium, and I was honored to be the opening speaker. I shared my personal history: twenty-five years of medical gaslighting at the hands of dozens of doctors and the systemic oppression which stole my life.

I founded the FemTruth movement to validate the experiences of other women like me. If I could share my story, then others could share theirs, too. And they did. I learned about the intersectional oppression in women’s health and built coalitions to break the cycle of gender abuse that women face when seeking care for debilitating pain, the same pain the National Health Service rated among the top-20 most painful. Yet that’s not what our society indoctrinates us to believe.

I am an endometriosis survivor, but I could be talking about many common women’s health conditions under the umbrella of dismissed and discounted symptoms from adenomyosis, polycystic ovary syndrome, interstitial cystitis, premenstrual dysphoric disorder, uterine fibroids and more. Moreover, FemTruth is inclusive of all menstruators and supporters of menstruators — not only girls and women menstruate — as well as all people and supporters of those with common women’s health diseases, for example, endometriosis, which has been found in baby fetuses and nonmenstruators. The affected community is larger than most people can even conceive.

In this way, conversations about “period pain” can empower because they end the feeling of being alone in one’s pain while shining a light on the gender bias and bigotry in our shared patient experience. These new conversations can shift the balance of power away from the status quo toward patients’ rights. The medical field lacks noninvasive diagnostic tools, which does not make us or our diseases invisible — it makes the protocol sexist.

For example, from our mothers, aunts, grandmothers and sisters, to our teachers, coaches, school nurses and doctors, society often responds to “period pain” with platitudes: “It’s normal. Periods are painful. Get pregnant. Take birth control. Get a hysterectomy. Get laparoscopic ablation.”

And by far the most common, “It’s in your head.”

Furthermore, sometimes they say that you can’t have “period pain” (or endometriosis) because either you’re too young, you’re too old, you’ve had children, you’ve had a hysterectomy, you’re too sexual or you’re not sexual enough.

None of these responses are true. In fact, they all perpetuate bias and gaslighting.

The delay in diagnosis for common women’s health diseases has very real consequences to mental health, ability, fertility and quality of life. Within women’s rights, this medical gaslighting epidemic affecting millions of people due to misogynist menstruation myths and industry-led standards of care is the epitome of patriarchal oppression. It keeps us sick, silenced and shamed.

The truth regarding women’s health must see the light of day through educational institutions via critical thinking and academic discussions. This area of social justice is still largely missing from mainstream study, yet it is a very common example of #MeToo gender-based violence and adverse childhood experiences.

Most women’s health disorders are often misdiagnosed as either diseases or disorders that also commonly affect males, such as irritable bowel syndrome or inflammatory bowel disease, or are even dismissed as mythical health diagnoses of “bad periods” or “hysteria.” These terms are due to clinical gender bias — and a lack of prioritization of research on females — which specifically translates to sexist medical practices, reinforced by industry influence and educational institutions.

Language around women’s health needs modernizing. We must update this old narrative. For example, “bad” as in “bad periods” is derived from ancient, misogynist beliefs of “the curse.” What specifically is the curse? The social norm of casting females aside as ungodly during the curse, citing a lack of hygiene, perpetuated the stigma, reinforcing the shame and isolation surrounding periods and women’s health in general. The entire language and field of women’s health must incorporate real voices of experience and proven, independent research.

People of color and economically challenged communities have even more difficult barriers when it comes to accessing health care due to the historic practice of racism in OB-GYN practices. Pelvic pain, and pain in general, is perceived as tolerable by people of color, or at the very least inconsequential, while the same pelvic pain is marketed as a “white woman’s disease” or “career woman’s disease.”

Is pelvic pain the only area of concern? Pelvic autonomy is also on the table. In the United States, unconscious women are defined as victims of medical student-performed pelvic exams that they didn’t consent to. Let’s not forget the advent of the vibrator administered by OB-GYNs to cure the “wandering womb” and to treat “hysteria.” The list of gender abuses is long. Where is the promise to do no harm?

In California we are mobilizing for change. Our coalition is strong and is leading Californian campuses and advocates’ voices in demanding representation, education and access to stop the cycles of abuse. We welcome the opportunity to open the lines of communication with the UC Berkeley Department of Gender and Women’s Studies to introduce coursework by patient-led experts with lived experiences for critical discussion.

I share my books and play, speak on campuses and host workshops because we must disrupt the bias, medical gaslighting and gender-based abuses with education. Through platforms such as these, we can learn from our shared experiences and begin healing. I founded FemTruth Policy California to provide tangible solutions: early education and referrals to specialists, access to free and nontoxic menstrual products and to remove the ableist barrier around “period pain” to create an inclusive education and ensure a path to financial independence. If we educate and empower a generation, a revolution of change is inevitable.

Silvia Young is a California-based author, world-renowned change agent in female empowerment and the founder of the grassroots coalition FemTruth Policy California.