"It was the most painful thing I'd ever experienced. One of the people in the crowded room threatened to tie me to the table, as I was fighting so hard that even multiple adults couldn't hold me down."
The following was written by Abby, a VCUG survivor from Florida. It was originally published on our Unsilenced Subreddit. Abby graciously agreed to share her powerful story with others who are also healing from VCUG trauma. We're so grateful for her bravery and eagerness to empower change.
VCUG Survivor Speaks Her Truth in Florida
I'm not quite up for sharing my whole story yet, but something I haven't seen much in here is the first-person POV about sedation during a VCUG.
Parents, this one is especially for you. You can't make an informed decision if no one is informing you of this.
For reference, I had at least 4 VCUGs done between the ages of 4-6, most of which I was so feverish I have little to no recollection of. The last 2 I remember to some extent, and the final one (the one I was medicated for) I remember the most clearly of all. For the last one I was given medication to sedate me, I:
1. Remember this
2. Confirmed with a parent and
3. Confirmed through medical records
Sedation was done for the final one because when I found out I would be having this procedure again I started protesting and showing major anxiety about it, but I was a 'good kid' (meaning I did what I was told) and my parents were completely unaware (like most) of the trauma this procedure did and would induce. Even without fully remembering the previous procedures, my body remembered, my subconscious remembered, and I knew it was wrong.
I received this medication approximately a half hour before the procedure while in the waiting room, we were told that it would make me very drowsy and then I wouldn't remember the procedure at all. This could not be farther from the truth.
I remember being in the waiting room and the room started to spin, I knew I had taken something and I was expecting to feel weird, so I wasn't scared of the meds. I tried to relax. The caretakers with me tried to make it as normal as possible (it was relatively painless, right? That's what everyone had told them).
I looked at the toys across the room after I gave up trying to read through the book they had brought because the pages were floating around me and I couldn't focus. I wanted to play with those toys I thought, but I couldn't even sit upright without someone supporting me by this point, I was even dosing intermittently.
Then my name was called, I went back to the room, into the bathroom with a parent, and stripped down but because I was so dizzy I couldn't stand I was helped to put on the gown.
The fog started to clear a little. My parent helped me out of the bathroom and when I saw the room the adrenaline started pumping. My head cleared and I was as awake and aware as I've ever been. I remember the feeling of my head clearing and realizing that the meds were gone. I would be getting no help. My parent stood outside the room as instructed. I was put on the table and surrounded by strangers.
I won't go into graphic detail about the procedure except to say I was fully aware, even with the heavy sedation they had put me under. I remember it as clearly as if it happened this morning. It was the most painful things I'd ever experienced. One of the people in the crowded room threatened to tie me to the table as I was fighting so hard that even multiple adults couldn't hold me down.
And I was told something that I internalized until this very day, "You are the worst patient I've ever had. We do dozens of these every day, and no one is ever this badly behaved. It isn't that bad we will tie you down and that will make it hurt worse."
"I remember it as clearly as if it happened this morning. It was the most painful things I'd ever experienced. One of the people in the crowded room threatened to tie me to the table as I was fighting so hard that even multiple adults couldn't hold me down."
And from that day forward, something stuck in my brain. I was the problem. I was different. I was weird. I was a wimp.
I, who had a drain tube later that month pulled from my abdomen post-surgery while fully awake without so much as a flinch, was weak.
I screamed so loud, I made almost inhuman sounds, sounds that were so bad, my parent threatened to break down the locked procedure room door so fanatically that the procedure team let them in and I was pulled off the table.
And it was over. They didn't complete the test.
I am an adult. A working professional. "Well adjusted." Overall brave and self-sufficient. And while I knew this had happened, until a few months ago I never thought about it for more than a few minutes at a time. It was too painful, and most importantly, I was the bad kid, no one else had the issues that I did from it, right?
"I made almost inhuman sounds, sounds that were so bad, my parent threatened to break down the locked procedure room door so fanatically that the procedure team let them in and I was pulled off the table."
A few months ago I was writing out my medical history and I decided to do some research on the condition I had that caused me to need these tests and eventually surgery. I looked up "extra ureter" and this test came up, VCUG.
I read all about this easy, painless, outpatient procedure, and I thought to myself, what if one other person had trauma from it like I do? So I Googled "VCUG Trauma" and I stared at the screen and I wept. I didn't cry, I mourned for myself, for the young brave version of me, and for all the other children this has been done to.
My whole life I felt connected to children who were victims of SA but I never understood why. Even though I knew of this procedure that wasn't the same, right?
But it is.
I received my medical records and this is actually in the medical notes about that procedure (paraphrased here for brevity):
"Child displayed unusual distress unequal to the discomfort of the procedure, parent forced the procedure to end, was informed we must do it again, they asked for an alternative."
I am now having to deal with the ramifications of this procedure because I can no longer push them down.
The kicker? Even with 4+ VCUGs done, they were NOT ABLE to diagnose what was going on, it took a full EXPLORATORY SURGERY for them to find that I had an extra ureter attached at the bottom of my bladder causing backups, constant urination, and multiple life-threatening kidney infections.
This trauma was caused for nothing. The ramifications are huge. I went from happy and confident to anger issues and separation anxiety. I had a panic attack and cried at my 12-year checkup because I had to put a gown on at the doctor's office. I had a meltdown at the OB-GYN at 18 even though I wasn't there for any exams and was fully clothed. I cannot go to the OB-GYN because my anxiety is so high around it. I am an adventurer. I love adrenaline rushes, I constantly go out of my comfort zone. And yet my kryptonite(s) are medical settings, drugs, or medication that make me feel that I'm not in control, anything having to do with my lower region (hello period product use issues, and fear of intimate relationships), or feeling vulnerable.
Let me sum it up this way. Because of this, I have bladder dysfunction, long-term kidney issues (underdevelopment), severe phobias, and PTSD. I also have multiple chronic diseases that we (myself and my current doctors) believe can be traced back to the physical damage, emotional and physical trauma, and underdevelopment of my kidneys.
My parents did the absolute best with the information they had at the time, but I will have to live with the ramifications for the rest of my life.
I don't blame my parents...consciously.
I hate having to say that, but through digging, I have started to realize that even though I had a great childhood otherwise, I still hold unintentional resentment towards them that I am fighting to this day. We have a great relationship, but there is this small subconscious (only now known about because I started prying through the dark parts of my mind) part of my brain that doesn't trust them and is always waiting for the other shoe to drop.
This isn't to scare you (although you should be scared that this is still commonplace) but rather to inform you about things no one else will. Just because they offer sedation, doesn't necessarily mean that will prevent trauma. It may just add new layers to the trauma.
"This isn't to scare you (although you should be scared that this is still commonplace) but rather to inform you about things no one else will."
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