Puberty, PCOS, Pain, and Personhood

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Today, I’m going to discuss puberty, ovaries, and transvaginal ultrasounds. This is your trigger and content warning.

 

 

 

I started my period when I was 9 years old, a few days before suffering through a viewing of “The Film” with my fourth grade sister classmates. I was at my dads’ house for the weekend when it started, and because I was 9 years old and had not yet seen “The Film,” I had no idea what was happening in my pants. Dad caught on when the hamper was filled with my underwear, and we had “The Talk.” I don’t remember a whole lot about the conversation except that I got a new bra, a box of pads, a pocket calendar with kittens on it, and he told everyone that “Brittany just became a woman.” I also remember locking myself in the bathroom screaming for a very long time because, you know, hormones.

I remember how much I hated the fact that I was a 9 year old on the rag. Super stylish fourth graders wore leggings, and pads really cramped my style. I remember severely staining a pair of light blue polka dot leggings and being severely pissed. Puberty also signaled my transition from pants to full time dresses and skirts. But aside from the fact that I started my period a year after playing a munchkin in the Wizard of Oz, my cycle was flawlessly normal. Thanks to my kitten calendar (jokes, jokes, so many jokes) I was able to track when I started and when I stopped. After just a few months, I knew my body by clock work and “womanhoodness” became routine.

One month, about 2 years later, I didn’t get my period when I thought I would. A week went by, and still, nothing. My parents assured me that this was normal and that sometimes women skip a month if they’re stressed or sick or pregnant. Since I was 11, we ruled out the latter as a reasonable improbability. Six month later, though, I still had no period and I had gained another human of weight. My parents took me to Dr. Lisa just to make sure there were no serious problems or religious miracles they had to be concerned about. I was a little on the heavy side, but everything seemed just fine. Diet and exercise, and the period should start up again just fine. JOY TO THE WORLD.

When I was in 7th grade, I hated math. A lot. I did just about anything to get out of class because of the serious anxiety and brain pain it caused me. My period started back up again sometime in junior high, and I used it to get out of math frequently. I really hated math. One day, I started feeling particularly hot and sweaty in class. My head felt like it was filled with cotton balls and my heart started beating a billion beats per minute. And then there was the pain. Imagine fiery iron fist grips squeezed tightly around your ovaries. If you don’t have ovaries, you’ll have to imagine those, too. It was the worst pain I had ever experienced and I thought my insides were ripping out of my body. I dropped. I was in a living nightmare: curled up in the fetal position on the floor of my math class in junior high school.

This started the first of many times I’d find myself in pain, immovable on the floor, surrounded by people who had no idea what was going on in my body.

Over the past 14 years, I’ve had at least 100 transvaginal ultrasounds. I assure you, it is as appealing as it sounds. They’re so routine for me now that I can practically do them myself. I’ve had so many that if the monitor is positioned correctly, I can read my own ultrasounds. The last time I was in the ER, I told the doctor what I saw and he confirmed the details (left ovarian torsion and a tipped uterus). Nailed it.

But the first one was different. My body history was finally abnormal, and with the episodes of debilitating pain, the doctor wanted a close look at what was going on. Inside of me. I was a modest child and not completely familiar with my own anatomy, so I was horrified when the doctor explained exactly where the camera was going to go. The first time I heard someone say, “just relax and let your knees fall to the side,” was the scariest experience of my life. I have never felt so much fear than that moment and my reaction to the doctor’s hands on my thighs was consuming.

The nurse couldn’t calm me down. My parents couldn’t calm me down. I was terrified of what was happening to my body, and my body made it perfectly clear it was not ready for what was happening.

My first exam was traumatic. I remember the doctors and nurses asking questions I could not have considered at 13 years old. They asked about parts of my body I didn’t know I had. They asked about feelings I didn’t have a vocabulary or life experience to describe. They asked if I was having sex, or if I’d been raped. They asked so many questions about my body, and touched so many parts of my body, that by the end of the exam it didn’t feel like my body was mine anymore.

Shortly after that exam, I was diagnosed with Polycystic Ovarian Syndrome. At 13 years old, I had a primary care physician, a gynecologist, and now an endocrinologist. The endocrinologist took a look at my super thick medical file, the back of my neck, the back of my ankles, and unceremoniously confirmed the exam’s results. I was thrilled and relieved that I would remain clothed for the entirety of the visit. He showed me pictures of my ovaries; they were a bit bigger than they were supposed to be and had a distinct string of pearls across each of them. On my left ovary, there was one giant blob that was supposed to represent a bigger cyst. One that would cause me a lot of pain when it ruptured like the one that did in my math class. He explained that this cyst, like the math cyst, was filled with fluid and that it was the fluid that caused the excruciating pain. He said, “Imagine pouring hot acid on raw skin. Free fluid from a ruptured cyst is doing that to your organs.”

He gave me metformin and birth control and sent me on my merry way.

Pelvic pain became a normal part of my life. I expected it. I did my best to deal with it. Pain was a major part of my high school, college, and graduate school experiences. I learned that I could be anywhere when a cyst burst: walking back to my dorm from class, on the lifeguard stand, driving, in a meeting with a professor. When a cyst burst, I dropped. It was as inconvenient as it was painful and I was exhausted from being in pain all the time.

I remember one doctor’s visit when I was 16. She explained to me that women with PCOS have a very difficult time getting pregnant, but that pregnancy often cures PCOS. That is one sick irony. Since I was on birth control (… and 16) it wasn’t something I had to worry about at the time, but when I was ready to start having children (…and not 16), I would have to see more doctors to aid in my fertility. That conversation was an interesting turning point in my relationship with my ovaries. She made it clear that pregnancy would be hard for me and that women with PCOS face incredible fertility challenges. I asked her if I could just have a total hysterectomy then if it was going to be so hard and I was going to be in so much pain for so long. It was the first time in 7 years of body weirdness and trauma that I felt like I could actually make a decision about my body that would put me in control. And then four seconds later, when she told me she wouldn’t do that because she wanted me to have options when I was older, I experienced the first time I was angry that other people were making decisions about my body. I learned in that visit that I had to be my own advocate for my own body. Three years after my first exam, I walked out of the office knowing my body was mine.

Having PCOS does weird things to my body (a dark line on the back of my neck and ankles, hair under my chin that must be addressed daily, constant weight fluctuations, a heart murmur, an expensive medicine cabinet) and I’m in pain most of the time.

I’m 27 years old and I have had almost every surgical and non-surgical treatment or procedure possibly available for gynecological use. I’ve had cameras in and on my body. I’ve had hands in and on my body. I’ve had cysts with hair and teeth removed from my ovaries. I’ve confused pain in other parts of my body with pelvic pain, resulting in an appendectomy and a colonoscopy. I learned that gynecological physical therapy is a real thing. I’ve been on drugs to induce menstruation, and drugs that put it on hold so I could get through grad school. I have gone through puberty, menopause, and back again. I have an IUD now, so like Ross and Rachel, my period and I are on a break.

Having PCOS is frustrating, heartbreaking, painful, annoying, and inspiring. I’ve had incredible body challenges, issues with how I looked, and a hell of a time getting over it. It’s my body, it’s my story. It’s done as many cool things as it has done way less cool things. It’s danced more times than it’s had a camera shoved inside it. I’ve seen it from the inside as I learned to respect what was on the outside. It has been fully covered and completely naked. It’s been cut open and it’s healed. It has saved lives and it has been saved.

It has experienced love enough to cover the times it’s experienced pain.

I’m 27 years old and there is no real resolution to this story. I set out this week to write something, and my body wanted to tell it’s story.

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