Unsilenced Support Group
The Unsilenced Movement hosts free monthly support groups for VCUG survivors and their loved ones. Pop in and say hello!
WHERE:
Virtual (Zoom)
Please RSVP to each event to receive the correct link for that support group.
WHEN:
8:00 - 9:15 PM Eastern
Our support groups take place on the third Friday of the month.
WHO:
VCUG Survivors
Our support groups are open to former VCUG patients of all ages and walks of life.
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What is the VCUG test?Voiding cystourethrogram (VCUG) is the current "gold standard" test for diagnosing VUR (kidney reflux) in pediatric patients. This procedure is routinely marketed as safe, low-risk, and painless. However, extensive research shows it causes equivalent trauma to child sexual abuse (1990; 1994; 2004). Here are some fast facts: VCUG has been performed since the 1960s. Research suggests VCUG is performed on ~400,000 children every year in the U.S. alone, sometimes unnecessarily. Researchers estimate this test is widely over-performed. VCUG is primarily performed on toddlers and preschool-aged children. VCUG is predominantly performed on little girls, who are more prone to UTIs and VUR. There is NO established protocol for VCUG performance, despite numerous "guidelines." VCUGs have been known to cause severe sexual trauma since 1990. VCUG diagnoses vesicoureteral reflux (VUR) in children. VCUG involves ionizing radiation (X-ray) to visualize the urinary tract. Recurring UTIs are the #1 clinical indication for VCUG referrals. There are safe, available alternatives to VCUG that providers rarely disclose. (View the list here.) Explore our research page for a more comprehensive overview of VCUG risks, alternatives, etc.
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What condition does VCUG diagnose?VCUG is the "gold standard" diagnostic test for vesicoureteral reflux (VUR) in children, a condition commonly known as kidney reflux. This condition occurs in newborns where one or both ureters is shorter than the other, causing urine to wash back up into the kidneys. This increases the risk of UTIs, kidney infections, and in severe cases, renal scarring. There are 5 grades of VUR, with Grade 1 being the most mild and Grade 5 being the most severe. In most cases, mild or moderate VUR can spontaneously resolve. In boys, this often happens before age 2. However, spontaneous resolution tends to occur later in girls, which is why VCUG is primarily performed on female patients.
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Can VCUG treat VUR?No, the VCUG test is NOT treatment for VUR. It does not improve or cure the condition. The VCUG is purely a diagnostic test that allows physicians to confirm whether or not the patient has VUR. For children diagnosed with VUR, treatment typically entails one corrective valve surgery, which entails being put under general anesthesia. However, surgery is far from the only option. For kids with mild to moderate VUR, the rate of spontaneous resolution is very high. For children with more serious cases, antibiotics may also do the trick. For a comprehensive list of alternatives to VCUG, click here.
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Are there risks to VCUG?Yes. While the vast majority of medical and hospital websites include "ionizing radiation" as the SOLE RISK of VCUG, this is far from the truth. In addition to severe psychological trauma, VCUGs are also known to cause: Vaginismus PTSD & CPTSD Dissociative amnesia Urinary bladder rupture Paruresis ("shy bladder syndrome") Urosepsis Traumatic play Developmental regression Sleep disturbances Medical phobias Long-term avoidance of care Behavioral, social, and academic issues Many Unsilenced survivors report depression or PTSD well into their adult years, in addition to the longstanding avoidance of medical care and a constellation of mental and physical health conditions (such as autoimmune diseases and gastrointestinal issues).
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Are children required to stay awake for VCUG?Yes. The vast majority of clinics and hospitals insist that the child be fully conscious and awake for the voiding part of the VCUG test. However, research shows that sedation is safe and effective for many children. Sadly, providers rarely offer it. You don't have to take our word for it. Here's the rundown from an experienced pediatric radiologist: "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." Despite being performed since the 1960s, there is no standardized protocol for VCUG. Despite updated AUA "guidelines" in 2011, studies reflect that VCUG "varies widely" between institutions, practices, and regions, including ionizing radiation levels. If your child was referred for VCUG, we highly recommend discussing safe, available alternatives to VCUG with your provider. If VCUG cannot be avoided, we encourage you to request safe sedation for your child's test to alleviate the risk of severe psychological trauma.
-
Are children sedated during VCUG?For the most part? No. In 2024, families are still rarely offered sedation for distressed and traumatized children, despite having already established various means of sedation as safe, effective, and capable of significantly improving VCUG patient experience. This has been the case in medical communities for quite some time. If VCUG is unavoidable and you believe your child would benefit from sedation, we STRONGLY encourage parents to ask their provider about safe, effective sedation options prior to the test. While sedation is readily available, it is rarely offered to families unless parents ask about it. To learn more about VCUG and sedation, check out this well-researched academic journal from pediatric radiologist Dr. Karen Blumberg: “Sedation and the VCUG.”
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Are there alternatives to VCUG?Yes! There are several safe alternatives to VCUG, including one radiation-free procedure that is SAFER, MORE AFFORDABLE, and EQUALLY OR MORE RELIABLE than voiding cystourethrogram (VCUG). However, doctors rarely disclose alternative treatments to families prior to ordering VCUGs. Visit our VCUG alternatives page or click the button below to learn more about available alternatives and supporting research for each.
Unsilenced Community Rules
The Unsilenced Movement is a grassroots organization founded by former VCUG patients. Whether you're a survivor, parent, or loved one, we ask that everyone abide by our community rules—not just in our virtual support groups, but across all of our digital platforms.
Repeated violations will result in a permanent dismissal from Unsilenced forums to ensure the safety of our members. As always, thank you for helping us maintain a safe space for survivors to connect, learn, and heal.
-
What is the VCUG test?Voiding cystourethrogram (VCUG) is the current "gold standard" test for diagnosing VUR (kidney reflux) in pediatric patients. This procedure is routinely marketed as safe, low-risk, and painless. However, extensive research shows it causes equivalent trauma to child sexual abuse (1990; 1994; 2004). Here are some fast facts: VCUG has been performed since the 1960s. Research suggests VCUG is performed on ~400,000 children every year in the U.S. alone, sometimes unnecessarily. Researchers estimate this test is widely over-performed. VCUG is primarily performed on toddlers and preschool-aged children. VCUG is predominantly performed on little girls, who are more prone to UTIs and VUR. There is NO established protocol for VCUG performance, despite numerous "guidelines." VCUGs have been known to cause severe sexual trauma since 1990. VCUG diagnoses vesicoureteral reflux (VUR) in children. VCUG involves ionizing radiation (X-ray) to visualize the urinary tract. Recurring UTIs are the #1 clinical indication for VCUG referrals. There are safe, available alternatives to VCUG that providers rarely disclose. (View the list here.) Explore our research page for a more comprehensive overview of VCUG risks, alternatives, etc.
-
What condition does VCUG diagnose?VCUG is the "gold standard" diagnostic test for vesicoureteral reflux (VUR) in children, a condition commonly known as kidney reflux. This condition occurs in newborns where one or both ureters is shorter than the other, causing urine to wash back up into the kidneys. This increases the risk of UTIs, kidney infections, and in severe cases, renal scarring. There are 5 grades of VUR, with Grade 1 being the most mild and Grade 5 being the most severe. In most cases, mild or moderate VUR can spontaneously resolve. In boys, this often happens before age 2. However, spontaneous resolution tends to occur later in girls, which is why VCUG is primarily performed on female patients.
-
Can VCUG treat VUR?No, the VCUG test is NOT treatment for VUR. It does not improve or cure the condition. The VCUG is purely a diagnostic test that allows physicians to confirm whether or not the patient has VUR. For children diagnosed with VUR, treatment typically entails one corrective valve surgery, which entails being put under general anesthesia. However, surgery is far from the only option. For kids with mild to moderate VUR, the rate of spontaneous resolution is very high. For children with more serious cases, antibiotics may also do the trick. For a comprehensive list of alternatives to VCUG, click here.
-
Are there risks to VCUG?Yes. While the vast majority of medical and hospital websites include "ionizing radiation" as the SOLE RISK of VCUG, this is far from the truth. In addition to severe psychological trauma, VCUGs are also known to cause: Vaginismus PTSD & CPTSD Dissociative amnesia Urinary bladder rupture Paruresis ("shy bladder syndrome") Urosepsis Traumatic play Developmental regression Sleep disturbances Medical phobias Long-term avoidance of care Behavioral, social, and academic issues Many Unsilenced survivors report depression or PTSD well into their adult years, in addition to the longstanding avoidance of medical care and a constellation of mental and physical health conditions (such as autoimmune diseases and gastrointestinal issues).
-
Are children required to stay awake for VCUG?Yes. The vast majority of clinics and hospitals insist that the child be fully conscious and awake for the voiding part of the VCUG test. However, research shows that sedation is safe and effective for many children. Sadly, providers rarely offer it. You don't have to take our word for it. Here's the rundown from an experienced pediatric radiologist: "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." Despite being performed since the 1960s, there is no standardized protocol for VCUG. Despite updated AUA "guidelines" in 2011, studies reflect that VCUG "varies widely" between institutions, practices, and regions, including ionizing radiation levels. If your child was referred for VCUG, we highly recommend discussing safe, available alternatives to VCUG with your provider. If VCUG cannot be avoided, we encourage you to request safe sedation for your child's test to alleviate the risk of severe psychological trauma.
-
Are children sedated during VCUG?For the most part? No. In 2024, families are still rarely offered sedation for distressed and traumatized children, despite having already established various means of sedation as safe, effective, and capable of significantly improving VCUG patient experience. This has been the case in medical communities for quite some time. If VCUG is unavoidable and you believe your child would benefit from sedation, we STRONGLY encourage parents to ask their provider about safe, effective sedation options prior to the test. While sedation is readily available, it is rarely offered to families unless parents ask about it. To learn more about VCUG and sedation, check out this well-researched academic journal from pediatric radiologist Dr. Karen Blumberg: “Sedation and the VCUG.”
-
Are there alternatives to VCUG?Yes! There are several safe alternatives to VCUG, including one radiation-free procedure that is SAFER, MORE AFFORDABLE, and EQUALLY OR MORE RELIABLE than voiding cystourethrogram (VCUG). However, doctors rarely disclose alternative treatments to families prior to ordering VCUGs. Visit our VCUG alternatives page or click the button below to learn more about available alternatives and supporting research for each.
Support for Former VCUG Patients
Unsilenced Support Group is geared toward survivors of VCUG trauma, as well as parents, allies, and loved ones who wish to attend. We also welcome is survivors of similar traumatic medical procedures, including gynecological and pediatric abuse.
Before you RSVP, please get to know us by exploring our website and familiarizing yourself with our mission. We hope this will empower you to decide if we are a suitable resource for you at this time in your unique healing journey.