5 Myths About Pediatric VCUG
- Unsilenced
- Feb 17, 2024
- 5 min read
Updated: Jan 20
The Unsilenced Movement was founded to give parents and families a more complete and accurate picture of what to expect during VCUG. For many of us, the effects are severe, debilitating, and lifelong.
In this blog, we debunk five myths about pediatric VCUG to help patients and parents make truly informed decisions for their health.
5 Common VCUG Myths, Debunked
Myth #1: The VCUG test isn’t painful, but may be uncomfortable.
Most healthcare institutions promote the decades-old voiding cystourethrogram as “painless.” If they don’t, they may acknowledge the test as uncomfortable at worst. You won’t find a single medical website that acknowledges the potential for pain during the VCUG procedure, which many former patients describe as "the worst pain" of their lives.
At Unsilenced, we acknowledge and validate the patient experience, especially given that hundreds of former patients have already come forward to attest to the pain of VCUG.
“Every time I’ve had one I screamed and cried, and cried on the way there or just thinking about it because of the pain I knew I was gonna endure,” says one former patient.
“The VCUG that you and your team conducted that day left me unable to properly urinate, sleep, or lie on my back as a child,” says another former patient, 23. “The pain and discomfort I would experience were not properly described to me or my parents.”
Abby, 24, writes, “The caretakers with me tried to make it as normal as possible. It was relatively painless, right? That's what everyone had told them…It was the most painful thing I'd ever experienced. One of the people in the crowded room threatened to tie me to the table, as I was fighting so hard that even multiple adults couldn't hold me down.”
“It felt like they were putting needles into me everywhere, and especially ‘down there’ where I believed was supposed to be private,” says Courtney, a former patient. “It is such a terrible feeling to face something so painful and so humiliating, and try your hardest to make it stop, and to have your strongest efforts completely fail—and to have your parents watch and do nothing.”
VCUG Survivors Are Not Alone in Speaking Out
It isn’t just VCUG survivors discussing pain during VCUG.
“I was taught during residency and fellowship that the patient needs to be conscious for voiding and that the procedure is not painful. I believed it,” says one pediatric radiologist with decades of experience. “I took pride in my ability to calmly wait and offer reassurance to parents that though their child was crying and screaming the child was not really in pain and that it would be over in a few minutes. Sometimes, those minutes seemed like forever to everyone in the room.”
Myth #2: Sedation isn’t offered for VCUG because it compromises the test results.
While healthcare personnel insist that VCUG patients must be fully conscious for the voiding part of the exam, sedation has been proven to be a safe and effective tool during VCUG.
You don’t have to take our word for it. Instead, we highly recommend this insightful journal from experienced pediatric radiologist Dr. Karen Blumberg. With over 25 years of experience, Dr. Blumberg explains that she was taught in medical school that the VCUG procedure is not painful, and that sedation cannot be offered.
At the start of her career, Dr. Blumberg explains that safe sedation wasn’t really available. “The times, however, have changed,” she says. “Some things we were taught in medical school or postgraduate training turn out not to be true.”
Dr. Blumberg asserts that conscious sedation utilizing either midazolam or inhaled nitrous oxide has been shown to be safe and to reduce distress in children undergoing VCUG without compromising the procedure results. “The patients achieve sedation but are awake and able to respond to questions and to void,” she concludes.
If a VCUG cannot be avoided, we encourage parents to ask their physician about these safe and effective sedation methods, as few physicians voluntarily offer them as options today.
Myth #3: There are no safe, available alternatives to VCUG.
While many healthcare professionals go out of their way to advocate against alternative diagnostic measures, several VCUG alternatives have already been established as safe and effective, and may be appropriate for some patients.
Under the informed consent doctrine, doctors are obligated to disclose all forseeable risks of VCUG, not just cherry-pick which information to give. This includes disclosing safe and available alternatives, including the option of no treatment.
Myth #4: VCUG doesn’t cause sexual trauma.
VCUG has a high potential for medical and sexual trauma, which is especially harmful in early developmental stages. Its traumatic nature has been validated by extensive research, including multiple studies equating VCUG trauma to child sexual abuse (CSA).
The sexual trauma resulting from VCUG is severe and well-documented. Medical experts have repeatedly confirmed that the procedure involves "painful, direct, and embarrassing genital contact.” The earliest study using VCUG patients as proxies in child sexual assault studies was conducted in 1990.
Many former patients go on to develop pelvic floor dysfunction and related conditions (like vaginismus) as a result of the VCUG procedure, which is a common effect in victims of rape and sexual abuse. These patients often find themselves in sex therapy or pelvic floor therapy in an effort to reclaim their bodies, comfortably use menstrual products, and enjoy sexual intimacy in marriage and relationships.
Myth #5: The only risks of VCUG include ionizing radiation and pink urine for up to 12 hours.
Many VCUG patients demonstrate symptoms of child sexual abuse in childhood, increasing their risk of adverse health effects like chronic illnesses, autoimmune disorders, mental illnesses, suicidality, alcoholism, cancer, and heart disease. As they enter adulthood with unresolved trauma, especially without the professional support they need to heal, their risk only increases.
The negative effects of childhood trauma (coined “adverse childhood effects” or ACE) are severe and well-evidenced. Every time the medical community ignores patient voices, the patients suffer the consequences. It’s time to stop treating VCUG and similar procedures like a “one-size-fits-all” routine examination.
There are no medical websites that go beyond the short-term risks of ionizing radiation and “mild irritation” from the catheter. In doing so, they fail to address the myriad of health challenges that we, as former patients, have presented since our tests, such as self-harm, PTSD/CPTSD, and long-term avoidance of medical care.
Advocating for VCUG Reform Since 2023
At Unsilenced, we know that the patient experience matters because the body keeps the score. That’s why our team is committed to staying on top of VCUG research and advocating for reform in pediatric urology until every parent and patient is fully informed about VCUG.
It is so wrong that information is ignored, withheld and buried. It is so wrong, the deceitfulness on full display on the webpages of many healthcare institutions seeking to downplay the downsides of this test and keep parents in the dark.