Ashley G.

I was a bold, fearless, and joyful infant until I underwent a VCUG at toddler age; after which everything changed. This procedure remains the most painful and distressing experience I have ever had to endure in all my years of living, despite also experiencing abuse and sexual assault outside of a medical context as many other VCUG survivors have. This procedure changed me on a fundamental level and effectively turned me into a shell of a human being for years. ​ If you're reading this and you have not experienced VCUG, there is really no way that you could understand what it is like to undergo this procedure as a young child. But if you'd like to try, imagine that you are a toddler and your parents have taken you to an intimidating place where strangers take your clothes off. They instruct you to lay naked from the waist down on a cold hard table, and depending on how compliant you are to their insistent orders, they may or may not restrain you while they penetrate your urethra against your will, fill up your bladder with fluid, and then make you pee it out on the table in front of them. This is violent sexual assault, no? Arguably, even, a level past what you would typically think of when you read or hear those words? So, how come it suddenly can't be considered sexual assault when it is conducted in a medical setting? Because it could help in the long run? Because the doctors may have good intentions, and they know better? I would like to see you try to explain that to two-year-old me. All she knows is that she was forcefully hurt by strangers who invaded her body.​ That example is meant to help you imagine taking the VCUG out of a medical context and visualizing those same steps in any other context. It is not easy to divorce a medical procedure from the precipitants under which it is performed, but it is necessary when considering that it is done to young children who cannot fathom why it is being done to them. It's (hopefully) common sense to everyone reading this that in any other context apart from medical, the act of performing the steps of VCUG is an abhorrent crime that comes with undeniable and extensive impacts on the victim, and substantial social and legal repercussions for the perpetrator. What I aim to make people understand is that many, many children interpret it all the same, regardless of context. I know I did as a toddler. I was two—how could I have even comprehended the concept of something "medical" and what that implies (that it was done for my benefit)? How could I have perceived this severe violation as anything other than malicious? I hope you are not already discounting my perspective in favour of maintaining established medical norms that normalize "necessary evils" for "greater goods." I hope you will hear me and other VCUG survivors out here. Maybe then you will see that in many cases, such as mine, the procedure is neither necessary nor a net positive on our lives. Although my memories of them are a complete blur, the first few years of my life were characterized by a painful burning sensation nearly every time I would urinate, uneasy hospital and emergency room visits, and the awful taste of antibiotics. I suffered recurrent urinary tract infections, and so I was subject to a VCUG two times: the first as a one-and-a-half-year-old and the second as a toddler. I was diagnosed with low-grade unilateral vesicoureteral reflux (VUR), which is fortunately known to have a high likelihood of spontaneously resolving on its own—as it did—without medical intervention considered to be "invasive" such as surgery.​ However, if it were up to me now, I can declare with full confidence that I honestly would rather have had exploratory surgery under general anesthesia than a VCUG at the age of two or three, fully awake, unanesthetized, and completely unaware of what was being done to me. No one prepared me for the amount of pain I would feel as the doctors catheterized my actively infected urethra while I was fully conscious. In fact, my parents were told that the procedure would not be painful for me, which they quickly found to be untrue once they watched me experience it.​ VCUGs are done without sedation because they require the child to urinate on the table. You'd think then they would at least use some local anesthetic, but only some boys are lucky enough to get this treatment – which, might I add, is quite bizarre considering the female versus the male anatomy. If the actual pain from the procedure was not enough, the pain of having my dignity stripped away from me was ensured to be included. My body will both never forget the tremendous pain that came with the procedure, and the way it was violated—the way the healthcare providers conducting my VCUG dismissed my panicked cries, only further tightening their grip on me as I shook with primordial fear. I will never forget the powerlessness I felt as they actively disrespected my autonomy and took agency over my body as if it were never mine in the first place.  In doing this, they taught me that there is nothing I can do to get someone to stop hurting me. Indeed, no matter how much I opposed the VCUG, nothing would stop them from transgressing my boundaries, both in the utmost physical sense of the word and in the more commonly used sense of the word, where it describes what we define as acceptable and comfortable to us. Not even my parents could save me—when I looked to them, they appeared just as helpless. A malignant vulnerability and helplessness were imposed on me, legitimizing a reality in which I am less than a person—where what other people want with me matters more than what feels safe to me; where safety loses all meaning. They invaded and reshaped me with their foreign object, which I, from my one short memory clip from the procedure, remember thinking was an electrical plug/prongs after looking down at it as they were about to insert it. My memory goes blank after this sight. I was reshaped both figuratively, as they destroyed my extroverted personality that was beginning to bloom and caused me to disconnect from my body, and literally, as they pumped my bladder full of contrast. Looking down at myself, I watched—with the most fear I have ever felt in my life—as they moved the perceived electrical prong closer to me, about to insert it. In this moment, I felt a primitive instinct kick in, telling me that this is the end; whatever is about to happen to me will kill me. My mind could never comprehend what would happen once it entered my body, and so as I watched them about to insert it into me, unable to fight back or make them stop, my body prepared me for death. I once saw a video of a goat with its legs broken, laying on the ground and shaking with helpless fear as its predator came closer, in for the kill. The video disturbed me more than any horror movie I've ever seen. I recognized myself in it—a deeply primal, anticipatory fear of death paired with the abject dread of knowing you are too vulnerable and powerless to defend yourself. Right as they go in for the kill, everything goes black, and I do not remember the rest. This event, I can say with certainty, was not only experienced by my toddler self as rape, but as death. It was certainly a bodily experience of death, and its dismissal as such by those around me meant that it was also experienced by my mind as death. The small fragments of a person I was and the person I was developing into were obliterated. I will never know who I could’ve been. I only know the person I became afterwards, a person who reaps the consequences of the death of my developing self, the consequences of being violated, disrespected, disregarded, and humiliated so blatantly and brutally, and the consequences of being at the utter mercy of those who undertook the denigration of my personhood—those consequences being so extensive that they eroded my psychological and physical health and permeate through the way I live my life: my ways of thinking and acting, my perspectives and beliefs about myself and others, my habits, my connections, my values, my worldview, my everything. Although I could write pages about the long-term effects of this procedure that I am aware of (and I still haven't uncovered all of them), I will keep it relatively short. My development, personality, and outlook on life were irrevocably damaged by the VCUG. I don't remember the whole procedure and I don't remember much from my childhood because of dissociative amnesia, but I do remember feeling scared any time I left the house. For the first couple of years after the procedure, I genuinely clung to my parents any time we went out. I went from being a happy and social toddler to a terrified and reserved child. I shouted in fear at men I had never seen before who looked like the healthcare provider who had done the procedure on me. My interest and curiosity for the world around me were extinguished and replaced with distrust and hypervigilance. Each day for years, I suffered from stomachaches that I now know to be associated with my PTSD. I had trouble sleeping every night for years, waking up my parents each night and asking them if I could sleep in their bed, but then keeping them awake for the rest of the night as I tossed, turned, and kicked in my sleep while having nightmares. Many of my nightmares as a young child consisted of doctors performing genital mutilation on me. Sometimes when I closed my eyes I would have visions of men in white coats leaning over me, holding sharp objects while I, an exposed child, cried and laid helplessly on the cold table to which I was tied, anticipating and then reliving the intense pain of being penetrated. My relationship with medical care has been a persistent obstacle in my life, and I am certain that accessing care will continue to be difficult for my entire life. Avoiding situations in which I'm a patient feels like self-preservation, whereas forcing myself to see the doctor feels like swimming with sharks. I went a decade and a half without seeing a doctor because I staunchly objected any time my parents brought up bringing me to the doctor, which happened to be often, as I experienced (and continue to experience) intermittent physical health issues and lifelong mental health crises which, to put it very frankly, have had me on the brink of death by suicide a countless number of times starting from the age of only eleven years old. Over the years, I have coped using self-harm and substance abuse.​ I was ultimately robbed of a healthy childhood where I felt safe in my own body, and even after healing, my struggle to trust people—and most importantly, myself—deeply affects my quality of life and interpersonal relationships. Once I had found out later in my childhood that I had undergone a medical procedure involving catheterization as a very young child, I knew that I had medical trauma–this was also evidenced to me by the fact that growing up I had always refused to see any medical professional for any reason (sometimes even choosing to get through painful symptoms that warrant emergency medical attention on my own in order to avoid medical professionals) and had intense fear surrounding medical settings. In my teen years, I struggled to get anyone to understand what having this procedure was like. I sometimes referred to it as "pee-hole rape." I didn't realize that other people who had undergone this procedure had felt the same way. ​It wasn't until I was eighteen years old, while I was doing some research after my medical PTSD was triggered (I had a negative experience in a medical setting, and this was my first time being in a medical setting in a decade and a half), that I found studies using children who underwent a VCUG as proxies for child sexual abuse, and I was finally faced head-on with a fact that, deep-down, I had known all along: the trauma I experienced at the hands of this procedure was not just medical.​ Realizing what this procedure was (both medical and sexual trauma) and discovering the evidence supporting that fact was both validating and emotionally devastating. I felt overwhelming feelings of shame, guilt, and disgustingness as I had to figure out how to process and accept the fact that what I went through as a toddler was perceived as rape by my brain. It made complete sense but it was difficult to confront. I felt intense sadness and anguish and then later felt uncontrollable anger and rage, especially as I read numerous medical websites describing the most traumatizing and life-defining event I have ever experienced as "painless" and "noninvasive.”  At the same time, suddenly after learning the truth my childhood made sense, my undiagnosed PTSD was valid, and I wasn't overreacting or overestimating the effect that the procedure had had on me like everyone had led me to think—rather, I was underestimating the effect the procedure had on me. Finally, if I could just manage to verbalize to people that there is literature asserting that the procedure I went through as a toddler is psychologically equivalent to violent rape—a task which should not be underestimated in difficulty and ideally should not have to be carried out by me or other survivors, but I guess someone has to do it since medical professionals clearly won't—they would listen to me and take me seriously instead of doubting the validity of my experiences, brushing me off, assuming that I'm exaggerating, or trying to play devil's advocate by defending or justifying the procedure. I went through my entire life getting these responses from people who I was close to and had felt comfortable enough to confide in about this, and the whole time I felt crazy for just existing with the trauma from this procedure and for the way my brain was dealing with its aftermath. I want to emphasize how lonely and isolating it is to grow up with this trauma. The trauma itself is severe, but another layer of trauma is added when the original trauma is not recognized as real or valid by society. Until co-founding Unsilenced, I struggled to feel like anybody could ever understand me. My pain, fear, and general inner emotional state were blatantly disregarded and shrugged off during my VCUGs, and continually ignored throughout my childhood, adolescence, and now in my young adulthood. It will continue to be ignored until the medical community gains some more sensibility and realizes this is wrong. The sexual nature of this procedure (that many people try to discount or ignore) and lack of dialogue about it cultivates a festering shame within VCUG survivors that can reside within our psyche for a lifetime if we don't, against all odds, miraculously realize and dismantle it. As former VCUG patients, we are still dismissed and gaslit about this procedure. Our voices are suppressed so that medical institutions can carry on without having to change anything and continue profiting off of it. Medicine is notoriously resistant to change and vulnerable to committing ethical abuses for decades without recompense—this procedure is no different. The field of healthcare as a whole continues to deny, dismiss, and overlook this quite obvious moral and ethical abuse in favour of maintaining the status quo at the cost of peoples' lives. This procedure has made me feel every negative emotion at its greatest intensity. Sometimes though, I feel profoundly empowered. I feel empowered when I write about it, I feel empowered when I connect with other survivors, I feel empowered when I educate other people on the detrimental effects of this procedure and advocate for other children, and, most of all, I feel empowered when I remember that I am alive and fighting for justice despite what happened to me.  If we care at all about the health and care of children, we need to recognize this procedure for what it is—extremely painful, distressing, and traumatizing non-consensual genital penetration—and opt for viable alternatives such as drinkable contrast fluid (colour flow Doppler sonography), CT urograms, renal DMSA scans, ultrasounds, and MRIs, in addition to devoting funding and effort towards researching and developing alternatives. When hundreds of thousands of children have essentially experienced rape at the hands of the medical system, is it not worth it to dedicate the necessary resources and effort to finding an alternative to the VCUG and in doing so save the millions of children who may undergo this procedure in the future from the severe trauma it can cause, or do physicians and researchers just not care enough?  When will it be time to listen to children and take them and their pain seriously, treat them with dignity and respect, and prioritize their care and well-being over profit, personal gain, gratification, or other selfish reasons?  How many more children have to suffer through violent rape until physicians stop abusing their power and actually adhere to the Hippocratic oath, and the medical community and general public realize that something has to change?