9 Damaging Lies Doctors Told Me When I Was Growing Up Intersex

Doctor holding a stethoscope with arms crossed

Source: iStock

Dear Doctors,

You all have some explaining to do.

You’ve told one lie after another to my family and me since I was three months old. And thanks to you all, I – like millions of other intersex folks – have been forced to live two lives.

A public persona who smiled and politely answered “no” each time you asked if I had any questions, and a private self who wallowed in teary-eyed questions.

My family, like most, had no reason to question your authority. I don’t fault them for that because I understand now that they were doing the best they could with a limited amount of misleading information you gave them.

Instead, I hold you professionals – sworn to the oath, first do no harm – accountable.

Regardless of whether you had pure intentions or “didn’t have the same amount of knowledge back then” doesn’t make your lies to my family and me any more excusable.

It would be one thing if you only lied to us, but I’ve since learned that lying is standard procedure.

And this unacceptable protocol reverberated throughout our lives in ways that I feel compelled to illuminate.

If I could embed one intention into this letter, it would be to bestow a sense of humility upon you.

Many of our issues could be squashed if you just removed your expert hats long enough to pay attention to our stories with humility. The lack of leaders in your field vouching for what’s right after twenty-plus years of intersex activism is offensive.

If you support our movement than I urge you to come out in opposition of the dishonest and harmful protocol that has stained your profession for the past 65 years.

Don’t underestimate the power your unique position holds, which enables you to contribute in solidarity to our movement.

Recently, the UN stated that what happens to us in healthcare environments often amounts to human rights violations.

One clinician objected that the UN, educated by intersex activists, was “antagonizing” the medical community and ultimately would prevent them from “actually understanding what’s really going on.” 

I’m sharing the following list of lies you told my family and me not to shame or “antagonize” you, but because I believe in the power of storytelling. And I have hopes that my story can help prevent you all from making similar mistakes.

Lie #1: You Were Born with Cancerous Ovaries

One of the first lies my mother told me was that I was born with cancerous ovaries and that they were removed in a life-saving post-birth operation.

You instructed my parents to tell me this made-up story, and it became a root in my development.

When I began asking questions about why I couldn’t get a period or have biological children, you told my mother to just stick to the cancer story – and she did.

Sad I wouldn’t be able to have kids, confused about the reason why, and scared the cancer would return, I began to retreat inward to a world of shameful silence.

Lie #2: Your Daughter’s Gonads Will Develop Cancer

You didn’t tell my parents the same lie.

Instead of telling them I was born with cancer, you hyped the risk that my “underdeveloped ovaries” which you decisively referred to as “gonads” – and really were my undescended testes – would likely develop cancer if left intact.

You noted in the records after my gonadectomy that the tissue samples came back negative and “no term other than gonad was used.”

This manipulative tactic meant to induce willingness in scared parents is a by-product of a culture that insists, sometimes by force, that humans only come in two polar opposite varieties.

Instead of removing my undescended testes and causing a life-long dependency on hormone replacement therapy (HRT), you could have instead been honest with us and offered to monitor them annually for signs of cancer.

I know a few other Androgen Insensitive (AIS) intersex folks who still have their testes, and they wouldn’t trade them for the world.

These types of decisions about our bodies belong to us and never to you.   

Lie #3: We’re Just Going to Make Your Daughter’s Clitoris a Little Smaller

In 1991, when I was four years old, you wrote in my medical records that I “underwent a clitoral resection and recession without difficulty.”

The procedure was supposed to reduce, not completely remove, my clitoris – so I foolishly held on to hope that a remnant existed, and I would find and learn how to enjoy it. That day has yet to come.

I once asked my father if the doctors at least fabricated a lie about the procedure’s health benefits. His “no” reply weighed heavy on my eardrums.

Discovering I didn’t have a clitoris seemed like the last straw, and it was then I began succumbing to the belief that because I wasn’t whole, I had nothing to offer and wasn’t deserving of other people’s love.

It’s still a daily struggle to unlearn this nonsense.

Lie #4: No One Can Tell the Difference Between You and Any Other Woman

According to you, when I was eleven, I requested “further corrective surgery” and asked whether it was an appropriate time to begin “hormone replacement therapy.”

This is odd since at that time, I didn’t know what HRT was and my previous “corrective” surgeries had been deliberately hidden from me.

Nonetheless, days before my twelfth birthday, I was again on an operating table unknowingly undergoing a vaginoplasty which attempted to fashion a more suitable and passing vagina and vulva.

Afterwards, in appointments, you repeatedly mentioned – while peering between my legs – that “no one but a doctor would be able to tell the difference between you and any other woman” while advising me “it’s not anyone else’s business but you and your future husband’s.”

It was as if you had a manual on Dealing with Hermaphrodite Kids that instructed you to first get rid of all the confusing bits and then use a heteronormative hammer to pound out what was left.

Your approach left me ashamed and afraid to share my secret with anyone.    

Lie #5: You’ll Have Normal Sex One Day

At least every six months, I was pulled out of school and driven to appointments where you stressed that I was normal.

“When you get married, you’ll be able to have normal sex with your husband with one small exception: After ejaculation, a lot more will leak out because you have a blind ending vagina.”

Nothing sounded more abnormal than a blind vagina that would leak like a faucet after sex with this “husband” you constantly invoked.

At school, friends started sharing stories about getting their periods. To fit in, I began sharing stories, too, while living in constant fear of someone asking me for a pad or tampon.

I also stopped taking my HRT with me on weekend softball trips and anywhere else someone might be able to see me taking it. 

After the vaginoplasty shame prevented me from exploring that region of my body, it wasn’t until the first time I attempted to have “normal” sex with a boyfriend in high school that I learned just how wrong you were.

I’m not normal. No one is. And that’s okay.

Lie# 6: We Just Need to Take a Look

Once the pain from “normal” sex subsided after a few weeks, I waited for pleasure to arrive like one waits for a train that derailed miles before reaching their stop.

I went into denial in order to cope with the reality that sex equaled pain, and I was faking every second of it.

Disassociating after hearing the command “we just need to take a look”, before you lifted my shirt and pulled down my jeans, prepared me for when I also needed to escape my numb body during “normal” sex.

The way you took control of my body sometimes made it necessary to deny its existence in order to keep existing.

Lie #7: I Would Never Lie to You – You Can Trust Me

It’s hard to trust people when “safe” people like my parents and physicians lied to me.

When I was seventeen, you wrote that psychiatrically, I was “normal” and otherwise a “well developed young lady in no acute distress” who was “not yet sexually active.”

The reality was that my life was crashing all around me – and I was having sex, but I didn’t trust anyone enough to disclose that information.

In their quest to have me accept my assigned sex and gender, doctors focused on my body and ignored the emotional aspects of my development.

Instead, you should have been checking in on things that really matter in relationship-building – like whether or not I was able to share my emotions or establish trust with others.

You only had me see a therapist once.

I stared at the same curve in the wood grain of his desk not speaking or meeting his eyes for the entire session.

For future reference, this is usually what’s referred to as a red flag.

Lie #8: You’re One in a Million, Kid

Another lie you told me was that I would never meet anyone else like me because being born with cancer in my ovaries only happened once in a million births.

This “knowledge,” coupled with being terrified to tell anyone the truth about my non-existent period and vaginal surgery, only added to the isolation.

There’s a slippery slope between feeling alone and hating yourself made easier by growing up in a world that has no representation of your experience anywhere.

Thankfully, this isn’t the case any longer as I now know that between 0.05% and 1.7% of the population was born intersex. The upper estimate is similar to the percentage of people born with red hair!

Thanks to early intersex activism combined with the advent of the Internet, finding community – while still challenging – is more possible than ever before. 

Lie #9: We Did What We Thought Was Best for You at the Time

My mother once said, “If God came down to me and said, ‘You have one wish, what will it be?’ It would be to start all over again with you.”

If I could rewind life and start all over again, I would have instead replied “yes” when you asked if I had any questions.

I would have asked you things like: Is any of this even necessary? How do you know I’ll marry someone and it will be a man? Are there other ways to experience intimacy with partners that don’t necessitate a vaginoplasty? Why did you take away my clitoris? 

Ultimately, I would ask for truth because I something tells me that working to accept the body I was born with would have been less traumatic then attempting to heal this fragmented one.

Hopefully it’s clear that my goal is not to “antagonize” nor to placate. Instead, it’s to hold you accountable while helping you recognize the injustice intersex people have suffered at your hands.

I’m asking you to go beyond doing no harm and join us in our movement to achieve the right to bodily autonomy for all – because as Sean Saifa Wall reminds us, “we will win.”

Intersex activists are carving the path every day, and you just have to decide if you’ll trek it with us.

Pidgeon is an intersex activist based in Chicago. They’re working to help create a world in which every intersex baby that’s born has the right to bodily autonomy.