Trigger Warning: This content contains graphic descriptions of VCUG that may be disturbing to former patients. Please read with care.
"Is the VCUG test painful for kids?" is one of the most popular searched questions about voiding cystourethrogram exams (VCUG), the "gold standard" diagnostic test for vesicoureteral reflux (VUR) in children.
Most VCUGs are performed without any sedation or adequate preparation, despite the availability of safe sedation options and equally effective alternatives like ceVUS. To make matters worse, the VCUG test is typically promoted as safe, "minimally invasive," and "painless" with a low-risk profile, with ionizing radiation being the only risk disclosed on the vast majority of major providers' websites.
Understanding Sexual & Medical Trauma During VCUG
Since 1990, VCUG patients have been used as a proxy in child sexual abuse (CSA) studies. The infamous Goodman study identified the VCUG test as unique in its inclusion of "direct, painful, and embarrassing genital contact, involving the child being genitally penetrated and voiding in the presence of medical staff."
In addition to the decades-long silence surrounding well-documented, evidence-based similarities between VCUG and CSA, the vast majority of hospitals and radiology practices don't disclose this information to parents, robbing pediatric patients of the professional help and resources they deserve before, during, and after VCUG.
“This test isn't painful, and you won't feel anything when the X-rays are taken," reads one website funded by Alberta Health Services (AHS), which promises to be "your trusted source of health information."
“Many [children] say it is simply uncomfortable," says the Inova Fairfax Hospital for Children. "Once the catheter is in place, your child probably won’t feel it is there.”
"Putting the catheter in feels strange and may hurt briefly," adds UCSF Benioff Children's Hospitals.
Former VCUG Patients Speak Out: "Clothes off, they tied my legs to the table..."
In a healthcare system that insists on silencing patient voices to maximize profit, it's more important than ever to provide accurate, helpful information to patients and families alike regarding what to expect during VCUG. For over 34 years, providers have failed to obtain legally effective informed consent from parents prior to ordering a VCUG test for their child.
While some hospitals are willing to make the effort to provide basic materials for VCUG preparation, these resources offer a surprisingly limited picture of the pediatric VCUG experience. "Be sure to smile!" one pamphlet says cheerfully, after describing what to expect during catheterization, often the most traumatizing part of the test. Another page describes the catheter as "a limp spaghetti noodle."
"It was more like a freshly sharpened pencil," one former patient points out. Another patient describes VCUG catheterization as something stabbing her in the vulva. Afterward, she remembers looking down to see drops of blood.
"Clothes off, they tied my legs to the table," another former VCUG patient remembers. "I endured the excruciating pain as they shoved it inside me...They tore my skin. I was screaming. I felt like I was being raped. They hurt me. It was torture, inhumane, and traumatizing, what they did to me."
Needless to say, there are major discrepancies between current VCUG promotion by hospitals and the pediatric patient experience, particularly in regard to pain during this distressful and traumatic procedure that most providers market as routine and pain-free.
VCUG Patients Used as As Proxies in Child Sexual Abuse Studies Since 1990
Pain during VCUG is documented in decades of critically appraised research. Multiple studies highlight similarities between VCUG and "violent rape," revealing that many children experience the test as child sexual abuse. To date, hundreds of former patients have come forward to attest to the severe pain of VCUG, leading to long-term adverse health effects like PTSD, vaginismus, suicidality, and chronic avoidance of medical care. This should come as no surprise, given that VCUGs always involve:
Forced genital contact: Cleaning of genitalia while legs are forced open and held apart.
Involuntary catheterization: If the child resists, they'll be physically restrained on the exam table by force, often by multiple adults, so the doctor can proceed with urethral penetration.
Pumping of the bladder with dye, potentially multiple times: Urinary bladder rupture is always a serious risk of VCUG, as there is no precise science regarding cyclical fillings. Certain contrast agents in VCUGs have been linked to a significantly increased risk of genitourinary cancers.
Nonnegotiable demand to urinate in front of everyone in the room without a parent present: This may include anyone: radiologists, nurses, graduate residents, students, or child life specialists, all while a fluoroscopy machine records the visual urination on the exam table.
If the child can't urinate on command, the test must be repeated, leading to multiple bladder fillings and increased exposure to varying levels of ionizing radiation (studies show that radiation doses, like VCUG protocol, "vary substantially" between practices). If the child urinates too early, meaning before the x-ray is taken, the test must also be repeated. Research also shows that the trauma is often substantially worse for children who are already toilet-trained.
"The doctors had the power to force me through this procedure 8 times, even as I screamed and cried and kicked and clawed," one woman recalls.
Another former patient recounts being grabbed and pinned down on the table, with multiple adults holding her legs open to expose her genitals. "The catheter entered without anesthesia," she remembers. "There was no Tylenol, no localized numbing agent, no topical anesthetic...Nothing. The catheter was an extreme[ly] foreign pierce of pain, so unimaginable...[unlike] anything I’ve experienced."
It's inhumane, pure and simple.
Hospitals minimise and dismiss children's pain. I have read accounts of kids screaming so hard they burst blood vessels in their eyes.
I screamed with such terror and panic at the pain and violation, I was choking and gasping for air. I could hardly inhale between screams and thought I was going to die. 'Be sure to smile' is sickening.