Photo courtesy of Heather Caplan

Getting Pregnant After Hypothalamic Amenorrhea Taught Me To Trust My Body

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The nurse announced my weight nonchalantly, writing it down and noting it was “good!” for the day's appointment. I had gained weight. It was expected. I was 16 weeks pregnant. At these monthly appointments I got used to stepping on the scale and seeing the pregnancy weight gain. I quickly got used to not overthinking my outfit choice or my always-full bladder or the fact that my appointments were sometimes in the morning, when I hadn’t eaten as much. Those are eating disorder (ED) thoughts — thoughts I had years ago while I was trying to recover from hypothalamic amenorrhea.

I graduated college with a degree in nutrition science. In my first nutrition class, freshman year, I said to a friend, “I know too much.” I both feared and revered the extensive knowledge I had about calories, nutrients, and how food affects our weight. It was a buffet for the non-stop chatter in my head that scrutinized my food and exercise choices all day, every day, to feed from. I was constantly calculating — thinking about what I ate earlier and what to eat next, planning workouts, searching for recipes I might never make, reading nutrition science to determine how I could eat even healthier, and craving foods I wouldn’t eat.

This is orthorexia — an ironic eating disorder in which an obsession with healthy (“clean,” “wholesome”) eating becomes unhealthy. For me, it was easily justified by studying nutrition and just wanting to be “healthy.” It resulted in hypothalamic amenorrhea (HA), but as a naive nutrition student, I didn’t know that. At 18 years old, I didn’t know that not having a period was unhealthy. I also didn’t know I wouldn’t have a regular period again for six years.

At age 22, I was starting to wonder about this no-period thing. Maybe I should pay more attention to this huge red flag my body had been waving in my face for years. What if it means I don’t have the option to have kids someday?

I didn’t think to ask, “Is it OK that I’m not getting my periods?” at my annual physicals. I never heard the term “hypothalamic amenorrhea” in my nutrition classes or at those doctor’s appointments, and no one thought to tell me, “This isn’t normal.” I didn’t talk about losing my period because I didn’t know what was happening — I didn’t even know for sure that anything was happening. Years later, I’d find out that hypothalamic amenorrhea can be caused by inadequate energy (caloric) intake, excessive exercise, increased stress, and changes in body weight. My body didn’t have the resources it needed to reproduce, so it cut off that system.

Photo courtesy of Heather Caplan

There are long-term health risks associated with HA, such as bone loss, heart health complications, and increased risk of depression or anxiety. Women with HA may be diagnosed with osteopenia, or osteoporosis. Active women are at a significantly increased risk of injury, specifically stress fractures. And women with HA may experience long-term fertility issues, rendering them unable to get pregnant (or they may have a very difficult time doing so).

“Not getting pregnant” wasn’t exactly a bummer while I was sipping one-dollar mixed drinks every weekend and one of my biggest concerns in life was which science class I’d have to tackle next. But at age 22, I was starting to wonder about this no-period thing. Maybe I should pay more attention to this huge red flag my body had been waving in my face for years. What if it means I don’t have the option to have kids someday? And if so, why isn’t anyone telling me that?

When I finally asked whether or not I should be concerned about my lack of a "natural" cycle while on the pill — that hormonal birth control might disguise some kind of underlying fertility issue — a nurse practitioner casually confirmed my fears: “Birth control pills won’t make you fertile,” she replied. She didn’t imply that I was already infertile, but she was the first person to give me pause. This isn’t as simple as not buying tampons every month. HA is a clear sign that something’s not right, and I wanted to figure what that was.

With what I knew about nutrition and health, I started to do the work. My weight restored to a healthy range for me — this is different for each woman, there is no magic weight at which we’re all likely to have a period. Some research suggests that a body-fat percentage between between 17 and 22 percent is associated with the onset of puberty, but that may not be all it takes to resume a cycle after HA. And it’s not all about weight or body-fat percentages. I exercised less, stopped categorizing foods as good or bad, and learned that food variety is far healthier than food restriction. I learned to cope with my stress. My recovery has continued to evolve long after my reproductive health normalized.

By age 24, I had changed my lifestyle and mindset enough to get my menstrual cycle “back.”

It took us four months to conceive. I was so (pleasantly) surprised I took four pregnancy tests in one day, went out to buy a few more, and scheduled a blood test. I stared at those double lines for hours. “Congratulations, you’re pregnant!” they said.

Photo courtesy of Heather Caplan

Every month thereafter, “good!” weight gain was the start of every appointment. During the worst days of my orthorexia, I would have struggled so much with that sentiment. I would have woken up anxious every morning, trying to face my body changing out of my control. I would have tried to run just as many miles as I did when I wasn’t growing a human, carefully calculated the exact amount of allotted “extra” daily calories in each trimester, and meticulously watched the number on the scale. I would have wanted to smile at the nurse to keep appearances up, but under that smile would have been a load of discomfort and fear.

I bought a book on prenatal nutrition and refreshed my dusty memory of what pregnant women “can” and “can’t” eat. (Oh, the MANY things.) Pregnancy recommendations focus heavily on ideal nutrition practices, exactly how much to eat — but “don’t eat for two!” — the exact amount of weight you should gain — not too much, not too little! — and what to do, and not do, to keep your baby healthy. Maternal health and wellbeing is often a second thought. If you’ve struggled with an eating disorder, body dysmorphia, or disordered exercise patterns, there are triggers aplenty. Your weight is taken repeatedly, your body is constantly commented on (and often touched) by friends, healthcare providers, and strangers alike. (Unsolicited advice: Please don’t.) Your ability to exercise comfortably depends on your unique experience and how your body responds. Even some elite athletes have to take exercise off the table during pregnancy, while someone else is able to continue on as if nothing has changed.

My recovery didn’t agree with all of these strict rules. My background in nutrition science gave me confidence to carve my own prenatal path. I ate to satisfy my hunger, not caring if it was more or less than “an extra 300 calories” per day. I moved in ways that felt good to my body, that I’m used to, or I took a nice long nap instead. I ate vegetables when they were appetizing; in the first few weeks, I ate a lot more cheese-flavored-anything. I didn’t calculate serving sizes or measure out portions or put too much stock in the scale. I trusted what I’ve learned in my ED and HA recovery; I can trust my body. And I did.

When his little mouth rooted for a boob within seconds of entering this new world, I was reminded how simple eating, and knowing what we need, can be.

When I delivered my baby boy, I was a little shocked by how challenging the whole process really is, and in awe of what the female body is capable of. When his little mouth rooted for a boob within seconds of entering this new world, I was reminded how simple eating, and knowing what we need, can be. When I tried to go for a walk three days after I delivered, I was quickly humbled by what it really means to step back and allow recovery to happen. I made it three blocks, and that was two blocks too many. I learned what starting behind square one really feels like.

My ED has no place here; it can’t tell me that I need more steps, or should try to burn more calories, or that I need to eat perfectly while I breastfeed. It can’t take away the glass of wine that is totally OK and doesn’t have to be “celebratory” — it just has to be chilled and white, preferably sparkling.

I was — I am — lucky. Every pregnancy is different; every fertility story is unique. I recovered from orthorexia and HA to have a (relatively) straightforward pregnancy; other women who have lived with similar conditions have required more time or more interventions to get or stay pregnant. Pregnancy itself then comes with a cocktail of things that could trigger an old disordered voice, one that will question the weight, the calories, the quality and quantity of exercise, the appearance of stretched skin and swollen feet and tired eyes. My personal recovery prepared me to watch my body change and deal with some of the challenges those changes would bring. Of course there were parts of pregnancy that I did not love. (Swollen feet and tingling carpal tunnel hands at 36 weeks, to name just two.) But for me, pregnancy after hypothalamic amenorrhea felt like a second chance to embrace, respect, and continue to trust my body. So I’m taking it.

If you think you are suffering from an eating disorder, you can find support at the National Eating Disorder Association by calling the hotline on 800-931-2237 between 9 a.m. and 9 p.m. Monday-Thursday, or between 9 a.m. and 5 p.m. on Fridays.

Check out Romper's new video series, Bearing The Motherload, where disagreeing parents from different sides of an issue sit down with a mediator and talk about how to support (and not judge) each other’s parenting perspectives. New episodes air Mondays on Facebook.