Whether you’re a parent trying to make fully informed decisions for your child’s healthcare, a loved one wanting to support a former VCUG patient, or a VCUG survivor hoping to learn more about the traumatic effects of this “gold standard” procedure, you’re in the right place.
Many former VCUG patients are left in the dark as adults, grappling with the unknown results of this procedure that healthcare providers never disclosed—and still aren't being disclosed today.
That’s why the Unsilenced Movement is dedicated to uniting former VCUG patients all over the world. If medical professionals insist on performing VCUG over safe, available alternatives, then we, as former patients, must insist on supplementing cherry-picked information on VCUG with our lived experience and extensive time-tested research.
5 Common VCUG Myths, Debunked
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’ll debunk 5 myths about VCUG to empower patients and parents to make fully informed decisions for their health and well-being.
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.
At Unsilenced, we acknowledge and validate the patient experience—especially given that hundreds of women have already come forward to attest to the pain of VCUG. When it comes to pain during VCUG, we listen to hundreds of little girls who are actually on the table, not the adults holding their legs open beside it.
This isn’t to say that pain tolerance doesn’t vary between individuals, or that some patients don’t experience extreme pain during the test. But you won’t find a single medical website that even acknowledges the potential for pain during this procedure—pain that many former patients describe as “the worst pain” they’ve ever experienced.
“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.”
It isn’t just VCUG survivors speaking out about the pain of VCUG, either.
“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 consistently attest 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 VCUG cannot be avoided, we encourage parents to ask their physician about these safe and effective sedation methods, as few physicians voluntarily offer it as an option today.
Myth #3: There are no safe, available alternatives to VCUG.
Under the informed consent doctrine, doctors are obligated to disclose all risks of VCUG, not just cherry-pick which information to give. This includes disclosing safe, available alternatives, including the option of no treatment—which would have been an ideal option for patients who didn’t have VUR or were suffering from another serious condition that repeated VCUGs didn’t diagnose, such as an ectopic ureter, resulting in delayed treatment.
To date, several VCUG alternatives have been established as safe and effective. While many healthcare professionals go out of their way to advocate against safe alternatives, they fail to mention that the “gold standard” VCUG has already been dethroned.
Contrast-enhanced voiding urosonography (ceVUS) is the true gold standard for VUR diagnosis. Here’s why:
Diagnostic value: ceVUS has an equal or SUPERIOR diagnostic value compared to VCUG.
Safety: Unlike VCUG, which requires ionizing radiation that children’s bodily tissues are 10x as sensitive to, ceVUS is a radiation-free procedure performed with ultrasound technology. This completely eliminates the biggest risk of VCUG and also allows parents to stay nearby and offer support due to the absence of radiation.
More cost-effective: As of 2023, ceVUS costs families approximately $800 less compared to VCUG. Of course, this jeopardizes the ability of hospitals to profit off the billion-dollar VUR industry that’s only expected to grow in the coming years.
Less traumatic: ceVUS is easier on kids, permitting them to sit upright for voiding—a more natural and dignified position, especially for potty-trained children.
For a comprehensive list of VCUG alternatives that may be perfectly suitable for your child based on their unique needs and symptomatology, click here.
Myth #4: VCUG doesn’t cause sexual trauma.
While you won't hear this from the medical community, the VCUG test often results in severe medical and sexual trauma for many children. In fact, the traumatic nature of this test has been validated by extensive research, including multiple studies equating VCUG trauma to child sexual abuse (CSA).
The earliest study using VCUG patients as proxies in child sexual assault studies was conducted in 1990.
Many former patients go on to develop vaginismus as a result of their procedure, a condition believed to stem from sexual trauma. This condition is common in victims of rape and sexual abuse, making penetration impossible due to the involuntary contracting of vaginal muscles. 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.
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.”
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 many adverse health effects: 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, this risk only increases.
Every time the medical community ignores or suppresses the voices of patients, those patients suffer the consequences. The negative effects of childhood trauma—coined “adverse childhood effects” or ACE—are severe and well-documented. 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. Some prevalent effects of VCUG among former patients include:
Self-harm
Suicidality
Vaginismus
PTSD / C-PTSD
Speech impediments
Depression and anxiety
Symptoms of child sexual abuse (CSA)
Autoimmune disorders / chronic illnesses
Long-term avoidance of medical care, including cancer screenings
Advocating for VCUG Reform in Pediatric Urology
At Unsilenced, the patient experience matters. We also know the body keeps the score. That’s why our research team is committed to staying on top of VCUG studies and advocating for reform in pediatric urology until every parent and patient is fully informed about voiding cystourethrogram, from short-term risks to available alternatives to long-term risks that aren’t being disclosed.
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.