VCUG Stories: Real Experiences with Pediatric VCUGs
- Unsilenced
- Jul 8
- 8 min read
Updated: Aug 14
Pediatric VCUGs have negatively impacted patients for decades. This isn’t limited to the U.S., either. Since the Unsilenced Movement was launched in 2023, we have connected with countless patients and parents from all different countries and walks of life.
A quick Google search assures readers that pediatric VCUGs are routine, painless, and completely safe—a stark contradiction to the wealth of studies equating it to child sexual abuse (CSA).
In a world dominated by corporate interests, it’s important to let patient stories take center stage. Keep reading to learn more about real-life experiences with the VCUG procedure.
VCUG Experiences
United Kingdom
“[M]y level of limitation and discomfort is currently such that I think a lot about the relief of ending it in any way I can, be that suicide or a miraculous cure. I have strived to be well for a long time. I’ve had a fair bit of therapy along the way, but it was only a couple of years ago that I really started to explore my health in light of my nervous system. And to consider that my poor health might not just be about the many courses of antibiotics and radioactive dye injections I had as an infant, but also a result of the repeated trauma I experienced. Finding the Unsilenced website was a massive piece of the puzzle for me, particularly as I’d often felt aware of trauma and inner damage, which manifested in many ways, but I was pretty sure that I’d never been sexually abused.”
“The procedure was very painful and I cried a lot. I went home and told my dad I had been able to feel 'it' scratching my insides. This feeling took years to go away. It took being an adult to realise the anxiety, panic attacks and nightmares were probably triggered by this event…I still struggle to talk about it, because it still distresses me so much, I've only ever told 2 people in my life about it, but I still don't think they understand. Really how could they? To them this is a 'normal' medical procedure, the doctors were helping me… how bad could it have been?”
Canda
“I didn’t have the words for what happened. They (my parents) didn’t either. I didn’t know what to say. We didn’t talk about it or decompress afterwards. I think they thought I would forget and we all would just move on. I wish that I did, but I did not move on. I was confused about my body. Who was entitled to my body. I became hyper-sexual at age 5. I didn’t have boundaries with my body. This carried on into my adulthood. There were many ways that this procedure showed up in my life. Nobody talked to me about my VCUG so I could not connect it with my continued pain and suffering. It was never spoken about after I got off that table. I wish they had asked me. I was angry because I was confused. I was sexually abused. My self image changed after that day. I had trust issues. I never felt like I owned my body. I began to binge eat as a child. I was depressed. I was experiencing symptoms of child sexual trauma. I just wasn’t able to connect my PTSD symptoms with VCUG until I was in my 30s. That made my younger experiences even more confusing and anxiety ridden.”
“I don't remember much about the procedure, but the details I do remember upset me more and more each day, I am 21 now. I was 9 when it was done, which means that I was old enough to understand absolutely everything that was going on. I remember my mother explaining exactly what would happen, I remember telling her I did not want to do it. I remember marking the day of the procedure down on my calendar as ‘the worst day of my life’—over a decade later and I won't argue with my 9-year-old self on that one. I remember the pain. I remember the embarrassment and shame of not being able to tell anyone. I remember being assaulted at home and that being the reason why I was having all the troubles I was in the first place. I remember lying still and doing what I was told even though I was scared and crying on a cold table with my pants down in front of a bunch of strangers and them hurting me. But most importantly I remember saying I DID NOT WANT TO DO IT. It was not just done without my consent, but against it. But I was a child and my feelings didn't matter to them.”
“If you're reading this right now and you are not a VCUG survivor, there is absolutely no way that you could understand what it is like to experience this procedure as a young child. But if you'd like to try, imagine that you are a toddler and your parents have taken you to an intimidating place where strangers take your clothes off. They instruct/guide you to lay naked from the waist down on a cold hard table, and depending on how compliant you are to their insistent orders, they may or may not restrain you while they insert an object into your urethra against your will, fill up your bladder with fluid, and then make you pee it out on the table in front of them.
This is violent sexual assault, no?
So, how come it suddenly cannot be considered that when it's in a medical setting?
Because it could help in the long run? Because the doctors may have good intentions?
I'd like to see you try to explain that to two-year-old me.
All she knows is that she was forcefully hurt by strangers who invaded her body.”
Germany
"I am unable to set healthy limits in every regard. I often felt as if I had been raped when I had sex with men. I always have a sense of not being safe in this world and I have major issues with social life due to my trust issues. I have anxiety states when I fear being abandoned and I often feel extremely lonely. I am 38 and I haven’t had a relationship for six years."
Join Our Survivors’ Subreddit: r/VCUG_Unsilenced
Hear Unsilenced Voices in Our Award-Winning Documentary Film MORE THAN A TEST (Now Streaming on YouTube)
VCUG Parent Stories
Often, parents of VCUG patients suffer secondary trauma and PTSD as a result of their child’s procedure. Here are their stories:
“My first child had multiple VCUGs in his first two years of life and I wish I'd had this group back then, 14 years ago…Even with all the therapy both my son and I have done, I feel like I still have more to process around these experiences as the parent witnessing my son go through this.”
“I’m the mother of a VCUG survivor who is ten years old. She had three VCUG tests as a preschooler and remembers each one. She now suffers from PTSD. Over a year ago, she begged me to find a support group for her. I recently found the Unsilenced Movement support group and it has changed our lives.
Big picture, we could not truly give informed consent for this test because NO ONE warned us of all the risks, especially of any remote possibility of long-term mental health issues. We were lied to, and when some of us ‘multiple VCUG’ parents mentioned that our kids seemed a little traumatized, we were gaslit and told that improvements had been made to make the test more comfortable. Um, OK? I guess we should proceed today?
I desperately want to give back to this VCUG Survivor Community, since they have given so much to us. Literally, they mail my daughter support letters! She feels less alone in the world. And what jumps off the page to me is how much they want acknowledgement about their traumatic experiences from their parents or caregivers. At a bare minimum, they want validation that the VCUG was traumatic to them, that it caused them to feel and behave differently because of the lingering psychological pain, that it robbed them of the childhood they could have had.”
“First of all, I want to say I’m sorry to those who have endured a VCUG and I want to thank those who are willing to share their stories and experiences. It has made a difference for me, as a mom.
My child has had multiple febrile UTIs recently and her doctor is concerned about VUR. After researching and reading in this subreddit until my eyes hurt, I have refused to do a VCUG. I’m struggling hard to find anyone in the near vicinity that is willing to do a ceVUS. I’m halfway tempted to start calling urologists and start a list of people who are willing to perform it in place of a VCUG so other parents don’t have to struggle to find an alternative.
I find it appalling that the ceVUS and other diagnostic tools aren’t more widely available. Our kids deserve better.”
“I can’t remember the last night I didn’t cry myself to sleep holding my baby over this entire situation. I’m a single mom without any mom friends to talk with, even if I had some, I doubt they would have experience in this.
Doctors act like I’m being dramatic and it’s not a big deal, but after searching ‘VCUG’ led me here, they are clearly wrong. Although I am prepared for her to still have trauma from the catheters she has already had, I feel confident my decision to refuse the procedure was the right one.”
“My son is 6, born with severe bilateral hydronephrosis. He has had multiple surgeries, mag3 scans and unfortunately as I was very uninformed and believed our urologist blindly, 2 VCUGs. He was under light sedation, but still fought for his life. It was extremely traumatic [for] us all, but my heart broke for him. He rarely ever talks about it. After finding this group, I attempted to get him [in] play therapy. I was hoping [to] repair that trust and his confidence in me as his parent.
The first session was a parent intake where I explained everything he had been through, and I told her exactly what happens during a VCUG. This trained ‘professional’ told me he doesn’t remember that. I know he does. How very dismissive and obtuse to brush him off. I am going to seek out other therapy options, but as you probably know, wait times are so long these days and options are slim. I will start the process 1,000 times over if it means I can get him some help.
I feel like I messed up, but I am trying to make it better and let him know I am so sorry, I will never make him surrender control of his body like that and that I am ready to hear him if/when he ever wants to talk. I just feel so freaking mad at myself and frustrated I can’t undo it. You guys are seriously survivors and I hope you all can get the peace you so deserve.”
Join Our VCUG Parents Subreddit: r/VCUG_ParentsCorner
Make Your Voice Heard: VCUG Parents Discussion Forum
Join the Unsilenced Movement
This is a safe space for VCUG survivors and their loved ones to heal from sexual and medical trauma. Unsilenced is the first and only online platform dedicated to raising awareness about the real and lasting health effects of pediatric VCUGs.
Coming to terms with our grief and taking the first step toward healing can be incredibly painful, even more so than it was before you took that step. But the good news is you’re not alone, and healing is possible.
Join the Unsilenced Movement. Because kids deserve better. #MoreThanATest
Comments