"The Haunting"
In "The Haunting," Derek shares a courageous story of coming to terms with the anger and grief of VCUG trauma.
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UNSILENCED MOVEMENT
EMPOWERING SURVIVORS TO RECOVER THEIR VOICES AFTER VCUG TRAUMA
You're not alone.
We know how terrifying it is to come to terms with VCUG trauma. It takes tremendous courage to scour the internet for answers to explain our lifelong struggles, but you're not alone.
The Unsilenced Movement exists because we know how it feels to be in your shoes. We understand the frustration of Googling "VCUG trauma" just to read words like painless, safe, and low-risk. Many former patients repress VCUG trauma for many years due to dissociative amnesia, delaying the recall of essential knowledge we need to recover from traumatic experiences in early childhood. Our organization is dedicated to ensuring these answers are accessible and available to survivors and their loved ones, empowering them to take the first step toward healing.
If you're a former VCUG patient, we understand you've been carrying burdens that were never yours to carry. This is a safe place to put them down.
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At Unsilenced, we’re here to mourn with you. We're here to grieve the childhood you lost, to grieve the person you could've been without this life-altering procedure. More importantly, we're here to celebrate the person you are today. You fought tooth and nail to be here, reading this right now. No matter where you are in your healing journey, we've got your back. We support you. We believe you.
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Welcome to the Unsilenced Movement.
Recovering from VCUG trauma? You’re not alone. Subscribe to our mailing list to never miss a VCUG update and join fellow survivors in healing and advocacy.
Understanding
VCUG Trauma
The voiding cystourethrogram (VCUG) test is a common pediatric procedure performed on children, predominantly preschool-aged girls, to diagnose vesicoureteral reflux (VUR). VUR happens when urine flows backward from the bladder into the ureters and potentially up to the kidneys. This condition can increase the risk of recurrent urinary tract infections (UTIs) and, in severe cases, kidney damage.
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Pediatricians typically order VCUGs after febrile UTIs, especially in recurring cases. Children with a history of kidney infections or a family history of VUR are usually recommended to undergo a VCUG, which allows doctors to assess the anatomy and functioning of the urinary tract, identify abnormalities, and confirm or rule out a VUR diagnosis.
The VCUG test is an invasive pediatric procedure involving painful genital penetration. It uses a catheter to fill the child’s bladder with a contrast dye and using X-ray imaging (fluoroscopy) to visualize the urinary tract while the child urinates (voids) on the exam table.
Children must be fully awake for the test and sedation is rarely offered, although research consistently shows that sedation during VCUG is safe and effective. Karen Blumberg, a radiologist with 25 years of experience, asserts in her 2011 publication, “I was taught during residency and fellowship that the patient needs to be conscious for voiding and that the procedure is not painful…Some things we were taught in medical school or postgraduate training turn out not to be true.”
Although VCUG is effective in diagnosing VUR, decades of studies show that it's very traumatic for children. Many experience the test as child sexual abuse (CSA).
Parents are generally required to wait outside of the exam room due to radiation exposure. At best, they must wait behind a wall or barrier while the test is performed. Rather than exploring potential alternatives that may be better suited for each child’s unique needs, the VCUG is often the only test ordered by PCPs immediately after a febrile UTI, which can stem from various causes besides VUR. Consequently, many children reap the psychological trauma of a “violent rape” without medical necessity, as is the case for some Unsilenced survivors.
Empowering Patients & Families to Exercise Their Right to Informed Consent
The Unsilenced Movement is committed to restoring the agency of pediatric patients and their loved ones. We deeply value each individual’s right to bodily autonomy, which is why we never tell parents what they “should” do in medical scenarios. Instead, our mission is to educate families, empowering parents to make informed decisions for their child’s care.
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Informed consent is an integral component of administering quality pediatric care to patients, yet so many parents are robbed of their right to give informed consent for their child's VCUG. Research suggests that the VCUG has been widely overperformed for decades.
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“While VCUG is a widely accepted test, it is invasive and associated with radiation exposure,” reads one 2019 study. “Most cases of primary vesicoureteral reflux (VUR) are low-grade and unlikely to be associated with acquired renal scarring.”
DRAWING BY FORMER VCUG PATIENT
AGE 10
"In Buffalo, they were way overdoing this procedure. This procedure is not very pleasant and a bit like rape. There is no anesthesia, the parents are forced outside of the room when the catheter is inserted...a lot of parents didn’t even know what the procedure was like. Some of the research assistants couldn’t even be in the room.”
UNSILENCED VOICES
The pain was TERRIBLE. The doctor would scream at me, "Stop crying or I’ll keep going." This experience affected me in every way possible. Since age 6, I couldn’t leave the house because I thought I was going to be raped.
This procedure left me unable to properly urinate, sleep, or lie on my back. The pain I would experience was not properly described to me or my parents. Somebody told me to "smile for the camera"—an 8-year-old child nude, immobile and catheterized under an x-ray.
I won’t tiptoe around this procedure anymore. What happened to me (and many others) was rape. I was just a little girl who wanted to play Webkinz and Mario Kart and watch PBS Kids. I didn’t ask for this lifetime of sexual trauma, fear of intimacy, and PTSD.
VCUG RESEARCH
(DOWNLOADABLE PDF)
The Unsilenced Movement is on a mission to put parents and patients back in the driver's seat by empowering and educating families about VCUG. ​Browse VCUG studies or download our comprehensive VCUG research PDF below.
Why Children Experience VCUG as Child Sexual Abuse (CSA)
1998
"Many diagnostic procedures, while necessary and appropriate, may be experienced by a child as a trauma. Health care professionals often perceive invasive procedures such as surgery as more painful and threatening to the child than 'tests' such as VCUGs. However, clinical experience indicates that the VCUG is often perceived by children as more highly distressing than other procedures..."
2016
"The VCUG can be considered one of the more distressing invasive procedures that children may experience in the outpatient setting...The anticipated anxiety of the procedure; the examination of the child’s genital area by a stranger; the insertion of a catheter into the child’s body; the embarrassment of lying uncovered on an exam table; and the command to urinate in front of those present in the exam room..."
2014
“[VCUG] complications that can occur in both sexes include UTI, hematuria, cystitis as well as urinary dysfunction following a catheterization, phobia of urination, nocturia, and stopping urination. In the literature, psychological trauma resulting from VCUG was considered the same as from a violent rape, especially in girls..."
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