Megan Johnson

I'm not even sure where to start or how to put it all together in a way that flows and makes sense. Without access to my medical records, I'm not sure I can even accurately remember the amount of times I endured this, or if I want to. At age 2 or 3 ....2 and a half maybe? I'm not sure I got a UTI or maybe it wasn't my first but it became a concern. I began getting VCUGs 2 times a year? At least 2x a yr. I also remember some cystoscopies. This went on until age 7/8 and they must have decided it resolved and I would be seen again if needed. Fast forward to age 12/13 and I had a bad UTI with kidney involvement and became very ill. This led to more VCUGs and a plan for surgery which was scrapped after one last VCUG made it seem unnecessary. Fast forward to my junior year of high school where I got a bad kidney infection leading to more VCUGs/cystoscopy tests and ultimately corrective surgery for VUR...open abdominal correction. Follow that surgery with a stent removal and another VCUG. I would love to see my records to confirm just how many I have had. But I am 38 and I doubt they exist. I have vivid flashes of memory from my first VCUG. I remember the child size gown with Disney characters on it. Goofy, Donald duck, Mickey the whole gang was there. I remember the little changing room My mom took me in with just a curtain fore to get a gown on. My mom was radiology tech and familiar with the procedure and knew the staff. They let her be in the room. I remember her standing back and doing nothing as I screamed for help. As an adult I can look back with wisdom knowing reality. But that 2/3 year old girl was laying there being forcibly tortured while her mother spots by, allowed it, and did nothing to stop it or to help me. I can see the room. I can see the lights and the X-ray machine above me. I can see the medical stuff, lots of them around me. I remember the brown betadine and how cold it was. I remember screaming as they forced my legs apart and fighting as they used multiple swabs to clean before inserting the catheter. Fighting the catheter insertion and crying the entire time it took to filly bladder with the dye which was also painful. I remember it being incredibly difficulty both physically and mentally to void on the table. While lying down. With an audience. I was at an age where you were punished for not going on the toilet, it was very confusing. I don't really remember anything after that point. I don't remember leaving the room or going home. I remember being out to sleep for a cystoscopy as a young child but I don't remember most of my other VCUGs. Kind of odd with the subsequent VCUGs I can remember what happened after them but not really before or during. I remember usually getting a toy and getting to eat at McDonald's or Taco bell. I remember having to take routine doses of disgusting liquid antibiotic sometimes preventative and sometimes for infection. I remember holding a knife to my throat in front of my mom at a young age and threatening to kill myself. I have a lot of trust issues. I tend to view almost everything in a negative light. I am skeptical 100% of the time. I have a very strained relationship with my mom. None of what I went through was ever validated. I was always treated as if I was overreacting. I used cuticle scissors to cut inside my ankles and wrists just to feel physical pain...I guess that matched my mental/emotional pain so in my mind it was more real. I have a lot of trouble ever asking for help, assistance, delegating anything. I wonder if that's because when I was so little no one helped me. I felt and still struggle with feeling worthless. I remember watching friends be goofy and having fun growing up and wanting to join in but I just couldn't. I always thought that's just how I was but maybe this altered my personality and life course more than I even know. I can't stand to not be in control of things especially my own body. I don't even like being a passenger in any kind of transportation. When the UTI issue came back around age 12, I remember feeling full-on panic when I was told I had to have another VCUG and I begged to be put to sleep, which was denied because they "needed" me in to be awake. My desire to be put under was seen as dramatic. I keep most of my wants or desires to myself anymore because they don't matter to anyone but me. The last VCUG I ever had after my corrective surgery I remember being on my period. I didn't know what to do so I left my tampon in. The nurse was clearly disgusted and annoyed. Pulled it out and proceeded. It was mortifying I could not physically or refused to void on the table. Was allowed to void in a toilet and come back to be X-rayed again. At age 9/10 I was sexual assaulted/abused by a cousin who was around 2 years older than me. He thought I was sleeping and I froze in fear. This happened at a large family retreat where we were all on mattresses in a large lodge with 50+ people present. This happened 3 more times. Twice at my grandparents when we all stayed there together and once when we were sent to my aunt's house for a week over the summer. I told my sister and his brother in my grandma’s basement, and they thought I was lying. My cousin's brother told their mom I guess and she confronted him, but he denied it. If it ever got back to my parents, I was never made aware. As a teenager we were camping with friends and one of the other family’s sons, who was my age, thought I was asleep and attempted to get his hand inside my shorts. I summoned the courage to move myself and locked myself in my parents’ van. I never told a soul. I don't like to be touched. I have trouble making or maintaining friends. I especially do not like females. I am married. Met my husband at age 18, married at 21. We have 3 little girls age 12,11,6. When my 11 yr old was born she had to be in the NICU due to prematurity. When they found out my history they excitedly offered to go ahead and give her a VCUG while she was in the NICU to go ahead and rule out VUR as it is "highly hereditary". Or so they said. No one in my family has it except me. My daughters all have no signs of it. I adamantly refused. I was then scared to leave her side to do anything more than pee or eat for fear they'd trump up some medical necessity to do it without my consent. One year later that same daughter suffered an injury in the bathtub with a plastic teacup tub toy she had just received as a birthday gift she popped onto. Ouch. We were held overnight for CSA presumption. I think watching them on her down to examine her to clear us so we could go home was the first time I realized I had PTSD from what was done to me as a child. I felt I failed as a mom from preventing my child enduring the same thing. She screamed and kept looking at me and every part of my being wanted to rip the two women apart examining her but I knew if I ever wanted to walk out of their with my baby and go home I had to comply. She was perfect and unabused, untraumatized until they did that to her. We were immediately cleared once those women examined her because we had done nothing. They did though. I don't know yet if my daughter has any memory of it but I sure do. I have a lot of pelvic floor issues. I'm sure the medical world will write those off as due to my abdominal surgeries, pregnancy, etc.... but I'm convinced the medical world caused it much earlier. I have been to therapists mostly for the CSA and it has helped some. Intimacy isn't as difficult as it used to be. But I think I have underestimated how much the VCUGs screwed me up and maybe that's more of the key to things. I never knew anyone else struggled with the lasting psychological effects of this. Especially since I was always treated as overreacting, over-dramatic. Ironic kicker here...I'm now an RN, BSN. I don't work with pediatrics and I don't do anything with VCUGs. I have worked hospital bedside and hospice. Working with kids enduring any medical procedure would be too triggering for me. I barely survived my peds rotation in school. I prefer to remain anonymous at least for now. Appreciate your work and what you are trying to do. I feel pretty passionate about preventing others from enduring this. Also just pediatrics in general...preventing kids from medical trauma. and would love to help somehow. Maybe sharing this does. I don't know. Happy to answer any questions or provide more info. I continued to struggle with UTIs as an adult especially through pregnancy. But thankfully never my kidneys after the surgery. We have noticed a trend that my IgA is low over the last 3-5 years. So my doctor looked into it more and we did some more testing. My IgA is, always will be, and probably always has been inadequate. IgA is your immunoglobulins that provide mucosal defense....bladder. mucous membranes....so it explains a lot there. I'm now on immunoglobulin infusions weekly. Wish that had been found when I was 2.