Abigail

I have undergone 4 VCUGs in my lifetime, and they have undoubtedly caused severe and irreversible damage to my physical and mental wellbeing. Before I can remember, I was developing UTIs and kidney infections multiple times per month. My urinary health dominated my toddler years, routinely missing preschool and playtime due to illness and doctor’s appointments. At home, my family had a stock of urine testing cups to drop off at testing sites because I was sick so often. When I was 4 years old, I was finally referred to a pediatric urologist. The obvious suspicion was VUR, so I was referred for a VCUG. It was described to me and my family as painless, at most uncomfortable, and something that I likely would not remember. That test is my very first memory. I was able to bring my mother in with me, but I was given no pain medication or numbing agents; I was told that I was too young. I felt so embarrassed to be wearing only a hospital gown in a room full of men. I was laid on a cold, hard table with bright lights shone on me. I was shown the monitor on which my bladder was displayed and told I could watch the test being performed. I was too young to understand why I would want to do that. The doctors opened my legs; I felt so exposed. The pain was immediate and unimaginable at the time. I began screaming and crying and thrashing. Several male doctors held me down and told me to be quiet. I don’t remember my mom doing much other than crying and apologizing; she felt guilty. The only other woman in the room was some sort of nurse or therapist. She had a picture book that she continuously asked me to interact with by finding certain items in the images. I did not want to do this. It seemed so unimportant. Why would this silly book distract me from being violated? I didn’t want her to feel like she was bad at her job, so I cooperated. I felt guilty for the other families in the waiting room. I did not want them to hear me scream and cause worry for their children. I tried to be as quiet as possible. Then the worst part came: I was told to pee on myself, on the table, with everyone watching me. I was so scared and embarrassed that I could not do it, so they had to fill my bladder more. I spent many many minutes laying exposed, covered in snot and tears, trying to force myself to pee to make it end. When it happened, the urine was cold. I was told that I had moderate-grade VUR, and that it would likely resolve on its own. However, because I was so young and experiencing UTIs, I was holding my urine for long periods due to the pain. My bladder was stretched to be larger than the average grown man’s. I was instructed to urinate regularly and do so sitting backwards on the toilet, a stance that would allow my bladder to empty fully by letting my tiny legs reach the ground. I underwent the same test again 3 years later. It was the same experience. There were no new or worsening symptoms. This test was to monitor my progress. My VUR eventually resolved on its own. When I was 11 years old, I developed a severe kidney infection. I underwent another VCUG. For this test, they sedated me with laughing gas, during which I had a horrifying hallucination that caused me to sit up in the middle of the procedure. I felt the agonizing pain throughout my hallucination, and when I sat up I sat on the catheter, causing more pain. The laughing gas was removed for the urination part of the test so that they could instruct me. I am still unsure why they could not sedate me in the same way when I was younger. It was determined that my VUR had returned, which I understand is not common. I was entering puberty, at which point my organs would shift and make surgery difficult. My parents agreed for me to undergo the STING procedure. This surgery was performed with no significant pain or trauma; I was excited to finally sleep through one of these procedures. My VUR was finally resolved. Throughout those first 12 years of my life, I struggled significantly with making friends and socializing. I felt like I was broken and that there was something wrong with me, and that is a feeling that I carry with me to this day. As I entered my teens, I developed severe mental illness. Granted, there were other factors contributing to this as well, but the underlying feeling of defectiveness was influencing my mental state and relationships. I have also developed significant hypochondria and obsession over potential medical conditions because I was taught from an early age that something about me needs fixed. I grew up with a suspicion that I had been sexually assaulted as a child, I just could not remember it. I theorized about who it could have been. I now know that it was my brain’s reaction to this test. Since then, I have been sexually assaulted in 3 instances. Each time, I felt significant stress, upset, paranoia, depression, etc. for about two weeks after, but always went back to living my normal life. Sexual assault did not permanently alter who I am as a person as it does most people because those changes were already made by this test. When I was 20 years old, I began developing UTIs again. I was absolutely terrified that I would need another VCUG. I went through rounds with a urologist, undergoing vaginal exams, cystoscopies, and voiding trials. I was referred for a VCUG once again. This was my absolute nightmare. I begged to be sedated or to bring a loved one with me; both of these requests were denied. I laid on the same hard table in the same humiliating gown and urinated the same cold liquid all over myself. I felt like I was in hell on a time loop. It was determined that I did not have VUR. Then, during another pelvic exam, my doctor determined that I had a cystocele causing incontinence, and I was referred to a urogynecologist. I underwent 2 more years of exams, voiding tests, medications, pessaries, attempts at pelvic floor physical therapy that were more invasive than I could handle, and 2 more urethral bulking procedures. Nothing worked. It was odd that I was dealing with this condition, as it is almost always seen in women twice my age following childbirth, which I had never done. My doctor determined that the most likely cause was my many VCUGs, which led to vaginismus, causing my pelvic floor to be exhausted, allowing my bladder to begin herniating, and causing incontinence. I was 22 years old and peeing all over myself due to tests involving trauma over the same thing. I begged and begged my doctor to perform a urethral sling surgery to make the incontinence stop. He was hesitant to perform this surgery on a 22 year old woman without children. It must be repeated every 10 years and eventually stops working, and will permanently stop working after pregnancy. I did not care. The idea of attempting a dating and sex life with incontinence layered with trauma was suffocating. I would rather adopt children and find a spouse than continue to feel that way. I received the surgery 1 year ago and it was successful, but wearing a catheter for several days afterwards was constantly triggering. I am currently physically and mentally better. I process my medical trauma through art. The way in which these tests have affected me will always haunt me. The mental illness it contributed to led me to drugs that I am now sober from, but that have permanently altered my brain function. The fear responses have made me incontinent, and that will eventually return when my sling stops working. This test looms over my life, and it needs to stop looming over others. If there truly is no other way to diagnose VUR, the sedation that I received in one instance should be the gold standard. This test is not painless or risk-less. It is horrific.