My journey with abnormal hormones and the fear of infertility it created
CW: infertility, body shame, doctor disbelief
I didn't get my first period until I was in high school. I think my body was too skinny and lacking in nutrients. All of my friends had theirs for years before I caught up. I remember my mom telling me that she was thrilled to get her period, because it meant she was normal. Mine was quite the opposite. I never felt normal.
Other than feeling like a freak for getting it so late, it turned out I had a septate hymen, which basically means there was extra tissue that created two openings instead of one. Less than 1% of girls are born with a septate hymen, but it's a very simple procedure to remove it, and is often done when the person is a baby or child. No one told me about mine, however, and I discovered it the first time I put in a tampon. Actually, the tampon went in fine, but it got stuck when I tried to remove it and further attempts became quite painful. I panicked for a few hours, convinced I'd get TSS (which my health class in school had made to seem far more common and dangerous than reality). I finally told my mom and we ended up doing a minor surgery on the bathroom floor. It was quite the welcome into "normal" womanhood.
After getting over the horror of exposing myself to my mother, I then had to deal with the fact that my periods were never regular. Sometimes they'd be two weeks apart, sometimes six weeks apart, sometimes I'd bleed on and off for a month at a time with no apparent pattern. I remember an eight week trip one summer (where I constantly roomed with peers, to add to my humiliation) in which I got my period five or six separate times. Experiences like this ramped up my anxiety because I never knew when (or where) I was going to get it. I once started bleeding in a middle of a rugby match at a field where there were no bathrooms. I once got it in the middle of a four day hike in the Negev desert with no bathrooms or showers, or even trees to hide behind. I got it during prom, during AP tests and final exams. I started to figure that I could count on getting it in the worst possible moments.
I can't complain too much about my periods -- they can be annoyingly long, but until recently they were never very heavy and my cramps have never been terrible. In fact, my PMS usually consists of two days of extreme euphoria that feels like a weird energetic high that I actually love, followed by a day of potential melancholy and then vivid, wacky dreams. But you know, nothing terrible.
I asked my mom one time in high school if I needed to worry about my weird periods. She didn't seem too concerned and said that my sister also had abnormal cycles, but that other than maybe having trouble getting pregnant, it wasn't a big deal.
Other than maybe having trouble getting pregnant.
I have always loved kids, and even as a high schooler I was horrified at the idea of not being able to have my own. But, hey, that was a long way off.
In college, as my overall health deteriorated, my periods got even worse. I remember one period that was six weeks late, so ten weeks after my last period. Although I wasn't having sex, my brain started to invent all of the possible ways I could have gotten pregnant. I had nightmares of trying to explain my immaculate conception to friends and family. I finally broke down and forced my friend to buy me a pregnancy test which was, of course, negative. I remember a massive flood of emotions, heightened by PMS (I got my period a couple days later). I was so relieved to not be pregnant as a teenager, but also terrified of why my period was so late, and what that meant for future pregnancy tests.
I went on the pill shortly after that, largely because I couldn't deal with the anxiety of living in a dorm and not knowing when my period was coming. I also had this weird idea that maybe my body just didn't know what normal meant, and if I showed it how to regulate, maybe it would learn to do it on its own. My body doesn't react well to any medication (probably because of my MCAS), so the pill messed me up pretty badly, but that's a longer story for another post. I did thoroughly enjoy having short periods once a month, although I still occasionally had spotting in between.
Then one summer I started having pain in the lower right-hand quadrant of my abdomen. I knew intestinal pain intimately, and this was not intestinal. I poked around with my finger and decided it felt like my ovary. My sister had ovarian cysts sometimes, and we had similar cycle issues, so I figured it must be that. When I went to see my primary, however, she told me I was wrong; it was "just muscular." She decided I had a weak spot in my abs and needed to hold off and heal before doing more crunches. I'd been doing crunches just about daily for several years. I had a six pack. Nope.
So I went back and tried to explain it better, that it didn't at all feel muscular. She poked around again and decided it was intestinal. I tried to explain that it wasn't, but she disagreed. I simply had a kink in my intestine, and it would go away on its own. I dealt with this pain coming and going for about a year until it started to get worse. And worse. I decided, screw it, I'm just going to schedule an appointment with my gyno, because I know it's my ovary. Then one day the pain seemed to crescendo all day so that I could hardly focus at work. That afternoon I was sitting at my desk when suddenly a knife stabbed me repeatedly in the ovary and I literally shouted and jumped straight out of my chair. Luckily no one was around, since the students were at PE, so I paced wildly around the office until it calmed down to a dull throb.
My gyno appointment, thankfully, was the next day. She decided to do an ultrasound (which, for those who don't know, meant sticking an ultrasound stick inside me and moving it around to find the right spot). Uncomfortable as it was, I loved getting to see my organs on a screen in real time! When she found the right ovary, it was clear that there had been a cyst and that it had ruptured. She also said that my ovaries were quite active, given the number of popped follicles. My heart leaped! Maybe I was ovulating after all! I left feeling amazing -- I had been right about the cyst, but it had ruptured, so I was now in the clear, and my ovaries were active!
It wasn't until I got home that I remembered, I was on the pill. There was no way I was ovulating. Why then were my follicles popping? My sister had been recently diagnosed with PCOS (poly-cystic ovarian syndrome). Was it possible that the pain I'd been feeling over and over for a year was a series of cysts, rather than just the one? But then again, my sister had stopped having cysts by going on the pill, which is the typical treatment for PCOS (which is an issue in itself, to be discussed later), so why would I have cysts while on it? I'd had enough of doctors, though, so I kept these questions to myself.
I have dealt with cysts on and off for years since that day, but only a few have ruptured. The worst was when the program director of my school was driving me home from a conference in Boston and it ruptured while we were in the car. He had no clue how to react, so I just screamed in pain on and off for half an hour, with my seat leaned all the way back, while he drove in silence.
As a high schooler dreaming of babies, I'd decided to get married by 23 and start having kids at 25. My sisters had married quite young, so this seemed very feasible. But at 23, I wasn't even engaged, was in an exhausting one year grad school program, and was still on the pill. I was starting to see the effect of the pill on my body (and mind/emotions). I also found out that some people's systems don't get back to normal for even a year after going off the pill. I wanted to know what my body could do off the pill before I was ready for kids. I remembered my mom's warning that it could take me longer than most women to get pregnant.
Meanwhile, my sister had been growing distant in a weird way. We were still skyping fairly regularly, but she seemed less genuine, like she wasn't being honest when I asked "how are things?" She'd have long conversations with my mom, which left my mom visibly sad, but then would say nothing about it when talking to me. She had been married for a few years by this point, and I knew she desperately wanted kids, so I thought maybe she was waiting to finish grad school or be more financially stable, and that the waiting was making her antsy. She was clearly growing less and less ok, and it tore me up to feel like there was something big going on that I was being kept out of. My sisters have always been my best friends, so the thought of her hiding something from me was devastating.
One night, I was up at 3 am with tachycardia and nausea (thanks, pill) and had an email from my sister. I couldn't imagine why she would be emailing me in the middle of the night, so I opened it right away.
She had been trying for years to get pregnant, and nothing was working. She had felt ashamed, angry with her body for failing her, and angry at God, in whom she had far more faith than I, for not being there for her when she needed it. She had hidden it from me because of her shame, and because talking about it made it more real, but I think there was a larger issue that trying to get pregnant, and especially when something goes wrong, isn't something that we talk about in our society. This will be the topic for my next post.
I've tried and failed to put into writing what the next several months felt like. Every time my sister got her period again, she was devastated, and it broke my heart. She tried treatments that made her feel terrible, and still they failed. Trying again and again can be dangerous and wildly expensive, so they hoped this round of IVF would work -- otherwise they'd need to do some rethinking. I balled big ugly tears when she called to say she was pregnant, but the weeks afterwards were terrifying. Pregnancies fail all the time, even those that are conceived naturally in healthy wombs. Each milestone they hit was one more weight off, until my sister began to let herself feel excited and free. She was able to finally process her shame and become a warrior for women facing the same stigma.
A bit after she sent me the late-night email, I confided in my sister that I was afraid of infertility. She and I had too many similarities with abnormal cycles, wild hormonal changes, frequent cysts, and the various other symptoms that I can now name as our common genetic diseases. If she experienced infertility, didn't it stand to reason that I would too? I had decided that I needed to get off the pill and to find out what my ovaries were doing. She encouraged this and taught me how to track my cycles, which is how she'd originally found out that she wasn't ovulating.
I will do another post about how I track my cycles. The results in my graphs made it clear that I am also not ovulating, at least not regularly. My cycles typically vary from 30-45 days -- the normal is 28. Every now and then I have a graph that shows a clear ovulation and luteal phase (albeit 10-12 day luteal phase -- normal is 14), and I feel a little lighter. They are few and far between, however, and I've learned that hormonal imbalance/infertility is a fairly common part of EDS and MCAS. As I am now well past 25, I am wondering how soon would be too soon to see an endocrinologist. It might be time to add yet another specialist to my ever-growing team.