EMILEE S.

I think to get the full picture of my experience, you have to start at the beginning of my life.
I was born with pretty severe glaucoma, and would have been blind if not for emergency surgery when I was only three weeks old. The situation with my eyes was sort of like a hydra though, we resolved one condition, and three new conditions would pop up because many eye conditions lend to others. So needless to say, I was always in and out of ophthalmologists’ offices and was very used to being poked and prodded.

I’d swell with pride every time a nurse or doctor said something to the effect of “Wow, you’re doing so good! Most kids cry for XYZ!” Whether that be eyedrops, getting my pressures checked, etc. I knew these remarks were compliments to me, but also to my parents. Making my parents look good made me feel good too. So I’d always respond with some comment to the effect of “What, like it’s hard?” a la Elle Woods. I was hungry for validation from adults.

I was absolutely fascinated by medicine. I was always paying attention when the doctors were talking to my parents, learned about my own conditions as well as others I didn’t have, and I knew all major eye anatomy by age 10. There weren’t many 10-year-olds asking their doctor how their optic nerve looks.

It extended outside of ophthalmology too, I would always watch when I was getting shots, even though my mom told me not to. And when I broke my arm shortly after turning 7, I was so excited about the x-rays. I wanted to be a pediatric ophthalmologist from a young age, to help kids and parents in similar situations to mine.

I’m not sure exactly what age the UTIs started, all I know is that I was constantly on antibiotics to combat the latest infection. I’d get ultrasounds of my abdomen (I was also fascinated by those) and doctors would feel around externally, always with clothes on if my memory is correct. My records show that I had a VCUG at age 4, but I don’t remember it at all.

So at age 7, being told we were going to go to the hospital and have my stomach x-rayed, I was pumped. The testing was on a weekend, so my dad, mom, and older sister all came along.

I remember being in a great mood that day. What was there to be anxious about, right? It was the weekend, and I was going to see inside my stomach—that’s all fun stuff. My mom came in the room with me, and my dad and sister stayed out in the waiting area.

I remember my mom’s mood not matching mine. When they sent us into the adjoining bathroom with instructions for me to pee and change into a gown, my mom seemed anxious, maybe a little agitated. I was in a goofy mood though, not really deterred by hers.

We came out and I laid on the exam table, still in a good mood. That good mood was gone pretty quickly.

My understanding now is that my VUR was a fairly severe case, so it is likely that I had an active UTI while this was all done. Even just them cleaning me was painful. I remember the nurse who cleaned me looked at me incredulously and brushed it off when I told her that it hurt.
But things hit the fan when they started to catheterize me.

I was immediately in fight or flight (and I chose fight). Nurses struggled to hold my legs down and apart on the table. I was crying, kicking, and begging them to stop. They didn’t.

So I looked to my mom for help. Her expression wasn’t just disappointment, it was disgust. Disgust at my behavior, I realized. I was normally such a cooperative kid. She didn’t want to be seen as a permissive parent, and so expressing her disapproval of my behavior was necessary. She didn’t humor my distress, only exasperatingly telling me to get it over with so we could go home.

Once I realized my mom wasn’t going to help me, I remembered my dad and sister were out in the waiting room. If I scream loud enough, I thought to myself, they’ll hear me. And then they’ll barge into the room and demand that these people stop. They’ll help.

So I screamed. And screamed. No one came. No one stopped. And eventually I was tired out enough that they were able to catheterize me.

The VCUG confirmed that my VUR was operable. And so in the summer, about a week before I turned 8, I had the surgery.

Even though I knew I’d be under anesthesia for it, I was still terrified because I knew what they’d be doing while I was under was similar to what they did in the VCUG.

The morning of my surgery, I considered finding a hiding spot. My almost-8-year-old logic was that if we missed the surgery appointment, I wouldn’t have surgery at all. What kept me from actually trying that plan was knowing my parents would be furious with me. So I didn’t.

I had one more VCUG post-operation, probably to confirm the surgery worked. This time, I knew what was going to happen and I was extremely anxious.

The only thing that was different that time was that there was one, younger nurse with a modicum of empathy. She explained that when I was tense, my urethra was like a closed fist, showing how she couldn’t get a finger from her other hand through her fist. She loosened up the fist to show that relaxing would help me be more open and it wouldn’t hurt.

I nodded in understanding, but realistically I came from a family full of people with undiagnosed, untreated anxiety and absolutely no skills in emotional regulation. I didn’t know anything about deep breaths to relax. And I certainly didn’t have any kind of specialized knowledge in relaxing my pelvic floor muscles. They gave me a plastic straw and told me to breathe through it and focus on that. I remember cringing and thinking it was like having a catheter in my mouth too.

And so that VCUG ended up like the last one. Me fighting and crying and screaming, and none of the adults in the room considering that my distress might be justified.

No one ever told me that that was it. I was done. I wouldn’t ever need another VCUG. So I lived in perpetual fear that there’d be follow ups and my parents wouldn’t tell me in advance, just drive me to the hospital and spring it on me. Would I need to go back every year? Every 5 years? In 10 years? I had no idea, and I never asked. Because what if I did need follow ups, and my parents had just forgotten about scheduling them? I wouldn’t want to remind them.

When the next school year started that fall, I was different. Previously a social butterfly who easily made friends, I now was having a hard time finding a place I belonged.

I stumbled on trichotillomania to self-soothe, compulsively pulling out my eyebrows and eyelashes. Having light skin and very dark hair, thick eyebrows, and thick eyelashes (thanks, Southern European genes), any time I pulled a significant amount of hairs out, it was very noticeable, and I spent much of that school year with hardly any eyebrows and eyelashes.

Looking like a freak didn’t really help in making friends, and it became a vicious circle. I pulled because I was anxious, was anxious because I didn’t have strong friendships, and didn’t have strong friends because I pulled. I’ve overcome the eyebrow portion, but I still struggle with compulsive eyelash pulling to this day.

I was terrified of my own body. A lot of kids explore, even if only for the sake of cleaning themselves. But me? No. As soon as I was bathing unsupervised, I stopped cleaning between my legs. And when I’d use the bathroom, I’d wad up a thick cushion of toilet paper so that I wouldn’t be able to feel myself when I wiped.

The onset of puberty changed nothing. While girls my age were talking like graduating from pads to tampons was the only way to ascend to womanhood, I couldn’t bear the thought of sticking anything up there. Just thinking about even attempting to use a tampon made me sweaty. My 14th birthday party was a pool party, but I ended up getting my period the day before and couldn’t swim with my friends that day.

When I got my first period at age 13, I remember crying. I thought about how now, if I was raped, I could get pregnant. And I really did not want to get pregnant. I got my period at school, and on the walk to the nurse’s office to call my mom, I eyed every man and boy I passed suspiciously. I knew enough about pregnancy and childbirth to know it was something I never wanted to happen to me, because it meant 9 months of having strangers stick their hands and various medical devices inside my body, and ending with unimaginable pain.

The hilarious thing is that I never drew the connection between all of this and my VCUG experience. And I wouldn’t realize it for well over a decade.

I met the love of my life in college when I was 21. He was kind and compassionate, and pretty instantly we just seemed to be on the same page. He became my best friend.

I had finally discovered masturbation (albeit, external only and through layers) at age 19, but hadn’t ever tried penetrative sex. He was understanding of my anxiety around penetration, and we had fun doing things within my comfort zone for a while. Then, at age 24, after living with him for a few months, I had decided I was ready to try and got on birth control.

Every attempt was unsuccessful. It was like I was a brick wall down there, and I always called it off. Different positions, different lubes, lots of lube, ridiculous amounts of lube, lights on, lights off, spending the whole day getting horny in advance of trying—we tried basically everything except alcohol. Alcohol was my mom’s suggestion when I asked her if I had any medical issues she knew about that would interfere with intimacy (I was thinking maybe I was intersex or something of that sort). A glass or two of wine to relax, just for the first time so I can get it over with, she said. I thought that sounded like a great way to become dependent on alcohol and said no thanks.

So I looked into sex therapy, found someone I liked, and filled out her preliminary paperwork. One of the questions asked about medical history, especially that which involved genitalia. So I looked up the name of my condition, VUR, and mentioned the VCUGs without really thinking about it. After all, that involved my urethra, not my vagina. It couldn’t possibly be related to the vaginismus I was struggling with.

She asked about it in our initial sessions going over history. And we quickly confirmed it was very much related. That led me to do more research, which led me to Reddit forums! I was diagnosed with generalized anxiety and PTSD.

I learned that no, I wasn’t being dramatic about the pain I was in. The time I spent since gaslighting myself, saying I was probably just overreacting… it doesn’t add up given the facts and the context of my medical history. All of the adults in the room both times failed me. Unfortunately, this procedure is still performed to this day, on tens of thousands of children each year.

I feel a lot of guilt. I’ve spent many sleepless nights crying for all of the kids who have been traumatized in the 20 years since this happened to me, thinking that I should be doing more, speaking up, writing letters. I’m still trying to figure out my place in all this. I feel like I may not be able to “heal” or “move on” while this is still happening daily.

I’m now 27 and still working on learning the body I’ve spent at least two decades tuned out of. Therapy has been great, but progress is slow—there is much to unpack and work on. I’ll be trying EMDR in the next month or so. My partner, now my husband, has been supportive and patient along the way, and I am so grateful for him.

With the clarity I have now, I know that I’m most uncomfortable lying on my back. Even for things like going to see my esthetician for facials and brow waxing, I can’t fully relax on my back. Additionally, the thought of any kind of medical penetration makes me ridiculously anxious. Initial COVID testing methods where they swabbed deep into the nose were something I avoided like the plague itself. I jumped on the rapid self-tests that didn’t require you to swab as deep.

I also want to see an ENT for allergy and breathing issues, but am terrified that they’ll want to stick something up my nose or down my throat. I also have not seen a gynecologist—getting a pap smear is completely off the table if I can’t even be penetrated by someone I trust. Isn't it ironic how I’ve changed from wanting to be a doctor, to now being terrified of them?

It does feel eerily poetic though, that I had no say over what happened to my body on that exam table then, and even though I’m now in the pilot seat, I still don’t have a conscious say over my body. My body remembers being violated, and it’s been on high alert ever since, ignoring my conscious brain. Still working on finding my peace.