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Welcome to 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.

  • 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.

Before attending an Unsilenced Support Group, please take a moment to review our Community Guidelines below.

Unsilenced Community Rules

By submitting an RSVP to Unsilenced Support Group or engaging with others on any of our online platforms, participants agree to our Community Rules. Repeated violations will result in that member being asked to leave the group on a temporary or permanent basis to ensure the safety of the group as a whole. Thank you for your understanding and cooperation to make Unsilenced a safe and non-triggering space for everyone!

Unsilenced Support Group isn't a replacement for professional mental health services.

Unsilenced Support Group is not intended as a substitute for professional mental health services. Its purpose is to connect former VCUG patients with support, community, and relational healing alongside likeminded individuals who also understand the life-altering effects of VCUG trauma. Our meetings are facilitated by founder/director Shelby Smith, a VCUG survivor who is not a licensed mental health counselor. We encourage survivors to seek professional treatment as needed to prioritize their health and well-being.

While we urge participants to be respectful of privacy, we cannot guarantee legally effective confidentiality.

Our support groups are open to VCUG survivors of all ages and backgrounds. Please be mindful by respecting the privacy of all group members. What's said in group, stays in group. Breaching other members' privacy will not be tolerated and may result in dismissal from our monthly meetings. It's everyone’s responsibility to make the group a safe place to be vulnerable.

Please be a respectful conversationalist.

We encourage participants to practice active listening and vulnerability by sharing and supporting other survivors in support groups. Please be mindful of interrupting others and respecting others' time to share. If you happen to unintentionally interject (it happens to all of us!) just be sure to return the conversation to the original speaker. 

Please refrain from using overly graphic langauge.

We understand that VCUG trauma will inevitably warrant graphic language. However, we simply ask that participants respect the sensitivity and uniqueness of each others' experiences by refraining from limiting graphic language whenever possible. When graphic language is necessary, please preface your message with an appropriate trigger warning (e.g., "TW: Sexual Assault" or "TW: Medical Trauma"). This puts the agency back in our survivors' hands by empowering them to decide if they're in a good headspace to process your message.

Please take responsibility for your own healing.

We don't support any in-person or online messaging that places guilt, blame, or personal responsibility on other survivors for your healing. Remember, the only person responsible for your healing and safety is you. Every member reserves the right to express themselves safely without being held personally accountable for your recovery. Please demonstrate mutual respect for others' boundaries and personal experiences.

Please respect other survivors on their unique healing journeys.

There is no "one-size-fits-all" when it comes to healing from VCUG trauma. Our forums aren't the place to critique or belittle the ways in which one survivor chooses to heal. Remember, just because something doesn't work well for your healing journey doesn't mean it isn't helpful to others. If you don't find our online forums or support groups helpful, we're sincerely sorry and encourage you to explore alternative avenues to find what works best for you. Judging or belittling other participants, including how the Unsilenced Movement facilitates our free forums, will not be tolerated. We are all here to learn and heal. 

Unsilenced has a zero-tolerance policy for bigotry, discrimination, and harassment.

Discriminatory language or actions against survivors based on sex, age, gender, race, ethnicity, sexual orientation, political affiliation, and other protected characteristics will NOT be tolerated in any circumstances. Please be respectful. 

shot back view of therapist and group of multi-age patients putting hands on each others s

Support & Community for Former VCUG Patients

Welcome to Unsilenced Support Group. We’re excited to connect with you! Just to make sure you’re in the right place, this Support Group is specifically for survivors of trauma associated with voiding cystourethrogram (VCUG) and vesicoureteral reflux (VUR) in early childhood. We also welcome parents, guardians, and loved ones who would like to attend in support of a VCUG survivor. Our group is also open to survivors of related medical and sexual trauma, such as gynecological and pediatric abuse.

 

Please take a moment to explore who we are by visiting our website before registering for our Support Group, as this will empower you to decide if we are a suitable resource for you at this time in your healing journey. As survivors, we know that healing isn’t just linear; it’s also messy—and that’s okay! We’re here to walk with you.

The Unsilenced Movement is a grassroots organization founded and supported by former VCUG patients. Our community is 100% volunteer-led. While our admin team works hard to nurture a safe space for fellow survivors, they are also healing from the effects of VCUG trauma. we request that all participants who attend virtual support groups or participate in Unsilenced forums follow important guidelines to protect everyone in our community as we heal and advocate for VCUG reform. 

 

Whether you're a survivor, parent, or loved one, please know our team is here to offer solace and support. We ask that everyone abide by our community rules—not just in live Support Groups, but across all of our digital platforms, including WhatsApp, Facebook, and Reddit. As always, thank you for helping us maintain a safe platform where survivors can connect, learn, and heal. We appreciate your support!

Our Survivors Come First. Always.

This is not the forum to advocate for VCUG testing. If you wish to defend the VCUG test, you may do so anywhere else online. Unsilenced is currently is the only safe space on the internet that respects and honors the VCUG patient experience, and we will make every effort to keep it that way. 

Any dismissal of VCUG trauma or promotion of the VCUG procedure will not be tolerated on any Unsilenced platform.

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