Deborah

1. How old were you for your first VCUG? Did you have more? I was just 7 years old, it was 1978. I was inpatient at Children’s Memorial Hospital in Chicago, IL for three days’ worth of urinary testing (now Lurie’s Children’s Hospital) and I was treated by Dr Lowell King, who at the time was one of the top urologists in the country. I only had one VCUG and that was enough. 2. How did it impact you? Do you remember what happened the whole time, or find out later? I remember EVERYTHING about that VCUG, and all the other urinary testing they had to do for me during my 3 day stay at Children’s Memorial. I remember ALL of it like it was just yesterday. Impact me? Major depressive disorder, generalized anxiety disorder, borderline personality disorder, multiple cardiac issues, asthma. Then in 2013 I was diagnosed with T1G3 bladder cancer. That began a whole new world of PTSD for me. The part I remember the most that has haunted me all these years are the memories of that test. I remember it like it happened yesterday. I was strapped down to a metal table. There were maybe 3 or 4 medical personnel in the room with me. I remember something being put into my private area and then suddenly feeling like I needed to go to the bathroom. And that feeling that I had to pee got worse and worse, until I was crying and begging for someone to let me go to the bathroom. I remember the RN with me telling me I’d be able to “go” in just a minute. When it came time for me to pee, I remember the nurse telling me, “Ok, now you can go pee.” And I was still strapped to the table. I was supposed to pee right there, laying on my back on a metal table. I was still crying because I had to go so bad it was painful and the nurse said to me, “You just said you had to go pee, now you can, what’s wrong, you can’t go now?” It was humiliating. Embarrassing. Demoralizing. For a 7 year old who was already afraid of her own shadow, this was like enduring HELL. 3. What was your childhood like? I was a very shy, clingy, child. I was afraid of my own shadow most days. I was afraid of everything. Afraid to make a mistake. Afraid to not be perfect. Afraid of getting in trouble with an authority figure. I was just shy, afraid, and anxious as a child. After the VCUG, I would cry at the drop of a pin if someone looked at me the wrong way. I became more anxious and more depressed. It wasn’t until I was in 8th grade that I made my first of three suicide attempts. 4. What were the long-term impacts of having a VCUG? (ex. psychological effects, physical health, daily functioning, self-image, etc.) It is mostly psychological for me. I have been in and out of therapy and hospitals. I take 4 different psych related medications daily. Self-image? In the toilet. All my life. 5. How did it affect your relationships with friends and family? No trust. Can’t trust anyone. Or, I went the other way and trusted EVERYONE too much. In my early college years there was A LOT of promiscuity on my part and not with any kind of sexual protection. I definitely took a lot of risks, and actually received a call from my county health department one day stating that someone I had slept with had tested positive for HIV and that I needed to come in to be tested ASAP. Thank GOD I tested negative. I was also a victim of sexual assault while in college from a college professor. It went on repeatedly for months during my senior year of college. He would take me to his office and close the door, then begin kissing and fondling me. Until one day, he raped me. I froze solid when it happened. I couldn’t speak, I couldn’t act, all I could do was think in my head, “How much longer until he’s done?” I just froze. I still blame myself for not speaking up in that instance. 6. How did it affect your perception of yourself? Did it impact your self-identity or self-compassion? Did you struggle to stand up for yourself or set boundaries? I suck at setting boundaries. I suck at standing up for myself. If confronted with something, anything, I tend to curl up in the fetal position and just go quiet. It’s almost as if I become paralyzed with fear. It’s the same feeling I had with my college professor who raped me. I just freeze up. Interestingly, that is also what I did during my VCUG as a barely 7-year-old girl. I froze for all of it. 7. How has this experience strengthened you? I went to college (the first time) right out of high school and got a BA double major in psychology and German. Then, 12 years later, I went back to school for my BSN, RN degree and successfully completed that. Now I work as a GI RN in a GI clinic, and I love my job. I still struggle with disordered eating, have for most of my life. 8. Have you spoken about your experience to others, or reported it to members of the medical community? How was your input received? Were any changes made as a result? Do you have strong feelings toward your pediatric providers or the healthcare industry as a whole? I have never spoken of this experience except with one therapist who I no longer see. She was the one who pointed out to me that my VCUG may be “responsible” for all my mental illness woes. She said that the test and experience in general could have been perceived by my child mind as sexual abuse. That was probably 10+ years ago and I only just felt strong enough to dig into it a little more recently. 9. If you could say 1 thing to every urologist in the world and they HAD to listen to you, what would you tell them? That VCUG is a barbaric test! 11. Reflect on your childhood self. Take a moment to connect with that little boy or girl and extend the self-compassion they deserve. Choose 3 positive words to describe them. Inquisitive. Thoughtful. Pensive. The words that really describe me as that little barely 7-year-old girl are Shy, Quiet, Embarrassed easily, Cried easily, easy target to pick on, etc.