SHELBY S.

I had a VCUG on July 14, 1997. The procedure was so traumatizing, my brain decided it wasn't worth remembering. For me, dissociative amnesia was the only way to survive this life-shattering event at just two years old, reducing the VCUG to a nightmare that persisted well into my high school years.

In the dream, which I now know was a PTSD nightmare, I’m flat on my back on a table, staring up at blinding fluorescent lights. Masked faces hover in and out of focus. Vaguely, I sense hands on my lower half. When I strain to crane my neck, to look "down there," I can't move my arms. I can't move my legs. I can't speak. I can't breathe. A group of masked men gathers around my naked lower body. Then, the worst part—being painfully violated against my will, penetrated by strangers while I lay physically restrained on the table, trying in vain to scream and escape.

When I started college, I convinced myself that the dream was a bizarre figment of my imagination. Surely my caregivers would have told me if I had any vaginal procedures or surgeries. I couldn’t think of a single reason why that would’ve been necessary, and more importantly, why neither myself nor my parents appeared to have any memory of such a procedure happening.

After my husband and I got pregnant in 2022, I was struggling to mentally prepare for my first prenatal appointment. I had suffered severe panic attacks at every medical visit for as long as I can remember. Mind over matter ceases to exist when I step foot in any clinic. After OB/GYN visits, I would always end up sobbing in my car, fighting for air, knowing I would keep feeling the doctor's freezing hands groping inside me for days or weeks afterward. I told myself this happened because I’d been sexually assaulted in high school and college. However, this wasn’t the case.

When my caregiver called to ask about my upcoming prenatal visit, I had no way of knowing that it would change my life for the absolute worst. As soon as I heard the words, "Well...you had this procedure when you were very little,” my first thought was the childhood nightmare I remembered all too vividly.

The knowledge filled up my body until there was no space left, until it felt like I was bursting at the seams. I spiraled into the sane mind-numbing dissociation I experienced in the summer of 1997. My voice didn't work, my vision went black, and every sound was distant and hollow, like I was underwater. I was just as paralyzed as I had been on that table as my caregiver walked me through every single detail of the procedure, retraumatizing me, and making me relive every moment of it. I tried and tried and tried to speak, but couldn’t. All I could do was envision what happened on that table.

On that table, men stripped the clothes off my two-year-old body. They washed my genitalia like my body was theirs and not mine. They spread my legs; they pried me apart to insert the catheter even as I thrashed and shrieked. I can still feel the aching pain and soreness they left between my legs in PTSD flashbacks.

On that table, I lay under massive machinery as doctors forced my legs open and touched me all over. When I recoiled to escape the pain, more men rushed to pin my naked body down like an insect under the X-ray. On that table, I endured forced catheterization as men forced the needle inside me, into my infected urinary tract, warning me to hold completely still and stop fighting—unless I wanted them to do it again.

On that table, men pumped my tiny bladder full of a contrast agent known to cause genitourinary cancers. On that table, adult men dominated my body like it was always theirs. On that table, the doctors exercised complete and total power over me, physically and sexually. On that table, men ordered me to void the dye they had just pumped into my infected urinary tract.

The pain was indescribable. The resulting shame, humiliation, and terror were more so.

When I’m forced to revisit those moments, all I can think is: I was 2. I was 2. I WAS 2.

These are the words that fill me with rage every day. Those were the words I repeated to my husband when he answered the phone, shortly after I got in the car and started to drive. I don’t even remember making the decision. For the next hour, I completely forgot I was pregnant. When I remembered, all I felt was fear and a complete loss of control. There was life growing inside me, life that anyone could touch or take away from me at any given moment. I realized then that there was nowhere safe for me to go. No place on earth would ever feel safe to me—not then; not ever.

I had no way of knowing that the VCUG was the reason I had always felt so defective and alone growing up. I didn’t know that the procedure would forever isolate me from my peers, from family, from friends. Instead, I grew up with the belief that I was the problem, that there was something wrong with me—not the men who ruthlessly violated a toddler screaming in pain on that table, forever preserved in my memory with the alien pain of vaginal penetration.

I froze on that table. I froze because the male doctors made me. Because that’s what “good girls” are supposed to do (or so I was told as an impressionable toddler). I was a good girl; I obeyed; I survived. My body was trained from an early age to not resist. A reasonable survival response, when a group of men overpower your naked body.

My trauma response is a reminder of something I had always believed to be true: That I have no power; that I have no choice; that I have no agency. That my body isn’t mine; it never was. How could it be after what those men did to it? What chance did it stand to survive my self-loathing, the neural pathways that formed to make despise every inch of my skin?

Now, PTSD has robbed me of the little control I had left. At my prenatal appointment in November 2022, I remember staring up at the ceiling as the doctor inserted the wand inside me, bringing back torturous sensations that I tried to mask behind a blank face. As I lay with shaking legs spread in the stirrups, unable to think of anything but the VCUG, I hear the words, “Do twins run in your family?”

My distress was briefly overshadowed by joy so pure, it felt like a surge of electricity. But then:

“There’s definitely two, but…I’m so sorry, I’m not seeing any heartbeats.”

I had a missed miscarriage. Both of my twins—one of which my husband and I had already named and joyously prepared for, whose arrival we had already excitedly shared with our closest friends and family—died a few days before the appointment I had been dreading for so long. Looking back, of course my body was no match for the devastating PTSD I developed after I found out what happened to me in 1997. Looking back, of course I couldn't have reasonably expected my body to support the healthy growth and development of two children. Not when it couldn't even process what had occurred 26 years ago.

And that may be the greatest injustice of all: this horrific childhood nightmare couldn't end with me. Instead, it likely affected the lives of my unborn children—babies I fully expected to carry to term, to cradle in my arms, to marvel at their tiny, perfect faces and whisper, I'll keep you safe forever.

Becoming aware of this life-shattering event throws that promise into question, though. Part of me is uncertain I could ever protect my child from everything. Not in a world where men like that continue to perform procedures like this on innocent little girls.

When I look around me, all I see is loss. In 1997, decades of my life were stolen from me. The VCUG affected me in every way possible. I was very clingy following the procedure. Previously an extroverted and social child, I suddenly hated sleeping in my own bed. My paranoia, anxiety, and behavioral changes were not tolerated well by my caregivers. My symptoms, which I now know to be consistent with child PTSD and child sexual abuse, were repeatedly laughed off, ignored, or even disciplined.

By age 12, I was suicidal. I lacked options to calm the storm raging in my brain, body, and heart. My dwindling academic performance drove a wedge between me and my caregivers. My personal relationships suffered as I wrestled with social anxiety and a deep-seated distrust of others. After failing out of college as a result of domestic violence, I underwent multiple suicide attempts. My instincts told me that I had no business being in this world. It was a feeling I could trace back to early childhood.

After learning about the VCUG, all the pieces finally fell into place. To say the procedure ruined my life is an understatement. Because of the VCUG, I harmed my body for over a decade. Because of the VCUG, I lay still and silent when a boy raped me. Because of the VCUG, I starved my body until I was severely underweight, yet still hated what I saw in the mirror.

Because of the VCUG, sex is intimidating and unpredictable instead of pleasurable and intimate. Because of the VCUG, I couldn't leave my house for 7 months because of PTSD. Many times, I came to as my husband was lifting my broken body up off the closet floor, where I'd been curled up screaming at the invisible men around to STOP Because of the VCUG, my family will never understand me. Because of the VCUG, I'll never know the woman I could have become, the accomplishments I may have achieved, and the passions I may have gravitated toward, had I not been so afraid of everything and everyone.

Because of the VCUG, I can't shake painful bodily sensations. I can't drink from clear or semi-clear water bottles. I can't use the restroom normally. My body carried this trauma for 26 years. I realize now that it never really forgot.

When I told my husband what had happened to me on that table, he informed me that it didn't sound like a procedure, but torture. He was correct. Every single VCUG survivor was tortured on that table during this barbaric "procedure" that the internet unanimously describes as safe and painless.

In addition to severe and lasting psychological effects, my physical health took a turn for the worst after the procedure. I lost vision in my dominant eye without a medical explanation. I was diagnosed with two autoimmune diseases, including one that I suffered since childhood but was too embarrassed to seek treatment for. (I preferred the pain over doctors’ visits. I still do.)

I have lifelong struggles with disordered eating, major depressive disorder, anxiety, complex PTSD, and self-injurious behaviors. When I finally obtained my medical records, I found file after file detailing countless visits and unexplained medical issues that I have absolutely no memory of, thanks to dissociative amnesia. One thing is certain: it all comes back to the VCUG.
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Today, I'm infuriated by the total lack of accurate information about voiding cystourethrogram and VCUGs on children. Google is plastered with phrases like “minimally invasive”—none of which describe the quality of life I’ve led as a result of this test. The lasting psychological and physical damage I’ve experienced is unparalleled. I was recently informed that I’ll likely require long-term trauma therapy if I have any hope of recovering from what those doctors did to me. Preventable harm—that’s what they did to the little girl on the table.

I've waited 26 years to know what actually happened to me in 1997. This was the non-negotiable first step toward healing. By withholding this information from myself and other survivors, medical organizations are literally robbing us of the ability to recover from the unspeakable trauma we endured.

Enough is enough. The Boston Children’s Hospital alone brags about performing over 2,000 VCUG procedures on kids every year. I’m flooded with anger and grief every time I imagine the generations of children doomed to suffer the same poor quality of life that I was forced to lead for far too long. It's time for the pediatric industry to take accountability for decades of wrongdoing and commit to finding alternative methods to diagnose kidney and bladder problems in pediatric patients. While it can be scary to envision losing your child to kidney failure, it should be equally terrifying to consider losing them to suicide. Little girls deserve better.

My self-compassion is my biggest work-in-progress, I hope to get to a point where I truly believe and know that I deserved better. In the meantime, I’ll stop at nothing to rescue others from this fate and fight to end this abusive pediatric procedure for good. Survivors and their loved ones deserve justice, and caregivers deserve ALL the information necessary to make INFORMED DECISIONS for their child’s healthcare. It’s that simple.