Unsilenced Voices

Unsilenced Movement

Welcome to the Unsilenced Movement, where former VCUG patients join together in advocacy and healing after VCUG trauma. Tune into Unsilenced Voices as strong women sit down to bravely share their VCUG experiences, each story a testament to the real and rarely disclosed effects of VCUG: PTSD, vaginismus, fear of sex and intimacy, suicidality, self-harm, and long-term avoidance of medical care. The VCUG is the "gold standard" diagnostic test for VUR in pediatric patients, but decades of critically appraised studies show that this procedure, primarily performed on preschool-aged kids, results in severe sexual and medical trauma. This is because many kids experience it as child sexual abuse (CSA). More disturbingly, VCUG patients were used as proxies in numerous CSA studies as early as the 1990s because researchers concluded the VCUG is "similar in many ways to child sexual abuse." "In the literature, psychological trauma resulting from VCUG was considered the same as from a violent rape, especially in girls," reads one 2012 study. Learn more about VCUG and VUR at www.unsilencedmovement.com. #MoreThanATest Ready to recover your voice? Share your story with us at theunsilencedmovement@gmail.com. We're here to listen and offer support. Read about us in STAT news at https://shorturl.at/ajlM0.

Episodes

  1. Research confirms a BETTER, Safer, Cheaper Alternative to VCUG

    01/14/2024

    Research confirms a BETTER, Safer, Cheaper Alternative to VCUG

    Contrast-enhanced urosonography, or ceVUS, is one of several safe, available, and effective VCUG alternatives. However, of the few providers than acknowledge its existence, most promote it as less effective. This is not the case. Global critically appraised research dating back to 2020 has consistently reaffirmed ceVUS as superior and MORE reliable than VCUG, and less traumatizing for children. Best of all, due to its ultrasound technology, it is 100% radiation-FREE. (Which children's bodily tissues are 10x as sensitive to, by the way.) Because ceVUS is radiation-free, the parent can stay with their child throughout the exam to offer comfort. Moreover, ceVUS allows the patient to void while sitting upright, a more natural and dignified position. However, the largest U.S. children's hospital (Cook's) does not perform ceVUS, nor is it marketed as a safe and available alternative. The same is true of the vast majority of clinics in America, Europe, and beyond. Why? Profitability. Convenience. The inability to prioritize a RADIATION-FREE procedure for children that is less traumatic, and costs families an average of $800 less than the "gold standard" VCUG, because profit comes first. Parents and families, we're here to support you. We're here to demand the care that kids deserve - that we, as former VCUG patients, did NOT receive. It's time for change. It's time to retire the VCUG. We will not be silenced. #MoreThanATest

    9 min
  2. Abby, 22, shares how 12 VCUGs impacted her life: "I can't even get close to being in a romantic relationship"

    01/14/2024

    Abby, 22, shares how 12 VCUGs impacted her life: "I can't even get close to being in a romantic relationship"

    Meet Abby, a 22-year-old VCUG survivor from New Mexico. Abby shares invaluable insights in a powerful and moving interview of life after VCUG trauma. [6:40] After undergoing a staggering amount of VCUGs as a child (10-12 tests total) Abby reflects on what romantic intimacy looks like to her. "I can't even get close to being in a romantic relationship," she reflects. "It feels weird to me. People seeing me in that way feels weird to me." [7:40] She goes on to explain something that will likely resonate with fellow VCUG survivors, adding, "I always thought I'd be the girl who beat the living crap out of anyone who hurt me...but I'm not that girl. My natural response is to freeze, and dissociate. Because that's what I was taught." When it comes to sharing her traumatic experience with others, Abby recalls being well-received by her therapists, if not fully understood, describing the mental health specialists as seeming unsure of "how to help." [12:20] Whenever she talks about the VCUGs, Abby says, "I always feel like I"m overreacting. Because that's what I was told back then, when I had my own concerns about what was happening to me. I was told like, those feelings couldn't possibly be valid. That's something I still carry with me. That's a burden I still carry with me. I think the hardest thing is to believe myself." When asked what she'd share with the healthcare community, Abby replies, "Well, they need to be honest about everything. When I was a kid, both I and my parents consented to a version of this procedure that was 'just uncomfortable,' that wouldn't leave me with any trauma, and that I wouldn't remember." Abby speaks to a central tenet expressed by all members in our Unsilenced Community: the dire need to establish legally effective informed consent.

    28 min
  3. Mollie, 22, shares her VCUG experience: "I definitely have vaginismus. I know it's because of this test."

    01/14/2024

    Mollie, 22, shares her VCUG experience: "I definitely have vaginismus. I know it's because of this test."

    Mollie, 22 | New York In this powerful and revealing VCUG survivor interview, Unsilenced co-founder Mollie Bushart shares her incredible life story of grief, loss, and healing after undergoing three VCUGs in early childhood—which, Mollie says, “definitely impacted me very much as a child.” “Before having [the VCUGs] done, my parents used to describe me as very adventurous,” Mollie remembers. “I was always the one that wanted to go on big rollercoasters. I was willing to do anything. After the VCUGs, I became very anxious, very withdrawn, very afraid of my surroundings.” A central part to Mollie’s journey is her longstanding struggle with vaginismus, a condition that multiple healthcare professionals accused her of “making up,” despite the detrimental effects on herself and her long-term boyfriend in New York. After developing dissociative amnesia due to sexual trauma, Mollie suspected she had vaginismus as early as 12 or 13 years old—just a few years after she started to feel suicidal at the very young age of 8. At 19 years old, after being told that her medical records had been destroyed, she was lost and left grappling for answers in an empty void, searching for the the truth that she not only deserved, but desperately needed to heal and take back her life. [4:15] “It was just very obvious to me that I had a definite fear of my g******s,” Mollie says. “I was very against using tampons. It just became more and more clear, the older I got, that something was definitely wrong.” Her brave efforts to find the answer left her and her long-term partner empty-handed, leading them to wonder if she’d been sexually abused in childhood and repressed the memory. Both her partner and close friend in the psychotherapy field echoed her thoughts, ultimately unable to offer any other potential reason for Mollie’s frustrating and unexplainable struggle. “I went to my gynecologist, and they said I did not have vaginismus at all,” Mollie recalls. “And I naively believed them instead of myself, which basically led to the first time I tried. And every time after that was like, 'Well, I definitely have vaginismus. There’s no ifs, ands, or buts about it.'” But, Mollie adds, doctors continued to gaslight her into believing there was nothing wrong with her. “It definitely put a strain on my relationship,” Mollie points out. “Not only did I feel like I wasn’t good enough to be loved, and I couldn’t contribute to a relationship what I was supposed to, but it also made him feel insecure about himself, and be afraid of hurting me.” [7:00] A year later, Mollie found out about her VCUGs in the tiny apartment that she and her boyfriend shared when her mom texted her to say that Mollie had confided to her about vaginismus-related symptoms as a kid, and she suspected the VCUGs may be to blame. She explained that Mollie "wouldn’t even let doctors near her waist area” whatsoever after having the procedure. “They would have to hold me down just to examine me,” Mollie says. “And so I looked it up online, and I found a whole lot of articles about how safe the VCUG was, and how harmless and risk-free it was. And it was just this feeling of, like…I don’t understand. Because it’s saying that it’s safe, and that nothing happens, and that there’s no risks. But then I’m having all these problems, and they don’t match up together.” [19:00] In terms of her healing journey, Mollie says that the most difficult part of VCUG trauma recovery was simply coming to terms with the horrible thing that happened to her. “That’s been the hardest part,” she confesses. “I searched for so long. I searched everywhere for an answer to these questions of why I was having so many problems as a kid.” Mollie explains that advocacy has been both a positive and negative aspect of her healing journey. As one of the Unsilenced co-founders, Mollie has made tremendous strides to raise

    51 min
  4. Ashley M., 20, was told she'd die without another VCUG: "My mom was blackmailed and lied to"

    01/14/2024

    Ashley M., 20, was told she'd die without another VCUG: "My mom was blackmailed and lied to"

    Ashley, 20, graciously sat down with Unsilenced founder Shelby Smith to share her powerful story for the first time. Her revealing testament is bound to change minds about the so-called “painless” voiding cystourethrogram (VCUG) test. [00:30] For Ashley, the effects have been detrimental and lifelong, even before finding out about her test in October 2022. Like many others, Ashley developed dissociative amnesia after her procedure at age 2, leading to 18 grueling years of severe mental health issues, avoidance of medical care, disordered eating, and self-harm. Ashley sets the record straight from the get-go, explaining, “The VCUG ruined my life. It turned my childhood very dark.” She describes herself as “a very mute and anxious child” who was terrified of any person in authority, from doctors to teachers to therapists. [00:45] She even recalls threatening to kill people in her preschool and home if they came too close. “I didn't want anyone to come near my body,” Ashley says. “I believed that at any point, someone can just violate my body. And that when they do, I just have to deal with it. I have to just let it happen, because if not, I'm going to be held down.” [01:30] Growing up, Ashley remembers feeling “so broken and defective and violated, all the time.” The bodily experiences she was forced to relive every day from the VCUG procedure eventually landed her in an eating recovery center—an exhausting and emotional journey that ultimately that offered zero insights into her suffering. [01:45] “I just wanted to die,” Ashley says. “I didn’t want to exist anymore. I wanted to feel like I had some control over my body.” [02:00] Her confusion and pain led her through a revolving door of specialists in young adulthood. “I just remember going into therapy, begging these therapists,” Ashley recalls. “Like, ‘There’s something wrong with me; there’s something wrong with my body. Can you please help me figure it out?’” When her parents began to micromanage her diet, Ashley had no choice but to turn to self-injurious behaviors. What began as childhood skin-picking—a body-focused behavior that left Ashley with bleeding heels and a perpetual limp as a little girl—evolved into a more dangerous coping mechanism. “My parents were watching what I was eating…obviously I couldn't starve myself anymore, so I moved on to cutting,” Ashley says, adding that there were many times she almost needed stitches. As someone with complex PTSD, the intense dissociation that Ashley experienced for many, many years led to more memory loss, as she recalled some mornings “waking up, covered in blood” with no memory of what happened. “I hated my body,” Ashley says. “Because my body felt so broken, and no one could help me figure it out. I felt so violated all the time.” Ashley adds that her VCUG experience as significantly worsened by a subsequent pelvic exam at 5 years old, retraumatizing her immensely. The pelvic exam was only necessary because Ashley’s vagina was torn during her VCUG. Horrified, Ashley’s mom immediately declined another VCUG when the doctor tried to coerce her, claiming that two-year-old Ashley would certainly die without another VCUG. “VCUGs are not treatments; they're purely diagnostic,” Ashley points out. “And no child should have their vagina torn in the process.” When Ashley’s mom refused to consent, the hospital blackmailed her. Not only did they threaten to call Child Protective Services, but they also withheld the life-saving antibiotics that Ashley’s body desperately needed to fight a kidney infection. Despite the doctor’s cold promise that her daughter would die within weeks without another VCUG, Ashley’s mom chose to take her daughter home without antibiotics. Ashley’s VUR—which, Ashley points out, was “very severe”—spontaneously resolved, exposing the baldfaced lie.

    31 min
  5. Ashley G., 20, shares her truth: "The effects of [VCUG] include becoming actively suicidal"

    01/14/2024

    Ashley G., 20, shares her truth: "The effects of [VCUG] include becoming actively suicidal"

    Meet Ashley, a 20-year-old VCUG survivor from Ontario, Canada. An Unsilenced co-founder and aspiring psychiatrist, Ashley’s voice is a unique and powerful perspective of life after VCUG. [4:25] For Ashley, the biggest impact in her adult life her long-term avoidance of medical care. “Going into medical settings is a continued challenge for me, and it never gets easier,” she explains. It’s just kind of something you have to do. But I still avoid it as much as I can.” In childhood, she explains, her self-esteem took the worst hit. “With the self-hate that this procedure gives you…I never believed in myself,” she says. “I was suicidal and I was self-harming, all throughout that time in my life. Being a trauma survivor is very isolating as a kid.” Although Ashley has only a brief memory of her VCUG at age 2. “To imagine it from a third perspective, like if I was a fly on the wall—it’s so…hard,” Ashley emphasizes, grasping for the right words to explain the immense emotion on her face. [20:25] Like many other women, Ashley developed dissociative amnesia after her test, but the impact was just as great, pointing to the urgency of understanding trauma and how it can affect the human body. [24:45] “Our nervous system is not any different from our other bodily systems,” Ashley points out, adding that it “isn’t any less real” than touching your own skin. “Your nervous system like the main computer in the body. And when that’s dysregulated, everything else is dysregulated.” [25:00] When asked what changes she wants to see in the medical community, Ashley answers with a half-smile. “I really want—I mean, there’s a few things,” she admits with a laugh. “I really want trauma-informed care to be something that every single doctor practices. I want that to be in every medical school curriculum. The nervous system affects every other system, and you can’t just pretend it’s independent from everything in the body.” "Even if these tests were only performed when completely necessary, they are still causing trauma equivalent to sexual abuse."

    42 min

Ratings & Reviews

5
out of 5
2 Ratings

About

Welcome to the Unsilenced Movement, where former VCUG patients join together in advocacy and healing after VCUG trauma. Tune into Unsilenced Voices as strong women sit down to bravely share their VCUG experiences, each story a testament to the real and rarely disclosed effects of VCUG: PTSD, vaginismus, fear of sex and intimacy, suicidality, self-harm, and long-term avoidance of medical care. The VCUG is the "gold standard" diagnostic test for VUR in pediatric patients, but decades of critically appraised studies show that this procedure, primarily performed on preschool-aged kids, results in severe sexual and medical trauma. This is because many kids experience it as child sexual abuse (CSA). More disturbingly, VCUG patients were used as proxies in numerous CSA studies as early as the 1990s because researchers concluded the VCUG is "similar in many ways to child sexual abuse." "In the literature, psychological trauma resulting from VCUG was considered the same as from a violent rape, especially in girls," reads one 2012 study. Learn more about VCUG and VUR at www.unsilencedmovement.com. #MoreThanATest Ready to recover your voice? Share your story with us at theunsilencedmovement@gmail.com. We're here to listen and offer support. Read about us in STAT news at https://shorturl.at/ajlM0.