I Have Hypothalamic Amenorrhea, & Being Able To Get Pregnant Is More Complicated Than You Think

Part of a special exploration of fertility and reproduction from Romper & Radiolab.

Romper's Trying project follows five women with very different stories through a year of trying to conceive. Where discussions about fertility often focus on the end goal, they'll document what it's like emotionally, physically, and spiritually before you get there — the anxiety, the hope, the ovulation kits, the tests. How do you function when getting pregnant or carrying a pregnancy to term isn't a given? Read on for one woman's answer to that question.

Jackie and her husband have been trying since late 2016. She suffers from hypothalamic amenorrhea, and this is the first installment of her Trying diary. To read her second, go here.

I’m Jackie. I’m a runner. And I’m infertile.

Growing up, I loved sports, but my talents lay elsewhere. I hated running the mile in physical education and couldn’t do it without walking at least part of it. Over the years, running became an outlet for stress... or a way to kill time... or a way to keep my mind off the fact that my boyfriend was doing an internship 1,000 miles away while I stayed in metro Boston as a cub reporter.

We were married in October 2009, and we found out while returning from our honeymoon that JP had landed a much-deserved and waited-for permanent wildlife job — in New York. Once again, physical activity helped me through the transition, the stresses of a couple of months of being apart, freelancing, and then starting a permanent job writing about subjects I had no idea about, as well as the hustle and bustle of the New York life.

I thrived in the Big Apple. JP didn’t. I was ready to start a family — dreaming of having a little one to take on hikes in the Adirondacks and strolls in Central Park. All JP wanted was to get out of Long Island. I cried a lot, but I moved on.

I was seriously underfeeding myself and screwing up my hormones in the process. That leads to the final personal identifier, my infertility.

When we moved again in 2014, this time to California, exercise again became my savior while my husband traveled. This time it was CrossFit, and I became obsessed. I was there almost every day, and when I learned people were distance running on top of the high-intensity interval training (HIIT), I started to do that too. The HIIT work made me so much faster, and I loved it. Two-a-days became normal. When JP finally came home, he joked I had replaced him with my gym friends.

I wasn’t particularly heavy when I moved to California — soft, but not overweight — but after three months, I had lost 10 pounds and had muscles. I had also lost my boobs, which JP made sure he pointed out one of the first days he returned. I also had become somewhat obsessive about food, trying to go strict Paleo, and then cheating badly with bags of clearance Halloween candy, protein bars, and trail mix.

Putting it together, I was seriously underfeeding myself and screwing up my hormones in the process. That leads to the final personal identifier, my infertility.

I’m not exactly sure when my over-exercising started to affect my cycles. I had a Mirena IUD inserted in 2012 when I went on Accutane to finally rid myself of acne. One of the “benefits” of the Mirena is either really light periods or no periods at all, so I hadn’t menstruated for about a year before I started ramping up my training.

I was irritable, sleepless, depressed, and uninterested in intimacy, but I brushed it aside as just struggling with the transition to California. Our friends started to have kids, but once again, JP thought that our town was not a good place to start a family.

I was too concerned with exercise, and soon enough, distance running, to really argue. I was winning trail 10Ks and toying with the idea of longer running. I was known as the “runner” in my Crossfit box. It’s cool to be known for something.

Toward the end of 2016, our thinking on children began to change. JP had turned 30 earlier in the year and something in him decided that it was now time to start a family. I had ground my way through my first marathon in the summer, was semi-injured from too many miles without enough muscle, and was digging my way out of the depths of some pretty disordered eating by the time my 30th birthday passed in October.

I had my Mirena removed in November 2016, and was told that it may take a little while to get back on track with menstruation, especially since I had been kind of irregular in the past. I may have PCOS, but we could fix that, the doctor said.

...My blood work showed I was, endocrine-wise, a prepubescent girl or a post-menopausal woman, depending on how you look at it.

I haven’t had my period since. And I don’t have PCOS.

What I do have, I’ve come to learn, is something called hypothalamic amenorrhea. Essentially, HA, as it is known, happens when your body senses low energy availability — either from under-eating, over-exercising, stress, or a combination of the three — and decides it needs to save its energy for important functions, like keeping you alive.

So a section of your brain, the hypothalamus, tells your pituitary gland to stop sending signals to produce sex hormones. It's also called “athletic amenorrhea” and can be part of the “female athlete triad” when combined with an eating disorder and low bone density.

Last year the gynecologist tried to induce a period by doing what is called the “Provera challenge,” which essentially pumps you up with progesterone for 10 days and then when you stop, you should bleed. I didn’t. That wasn’t a surprise when my blood work showed I was, endocrine-wise, a prepubescent girl or a post-menopausal woman, depending on how you look at it.

I was also fairly underweight, and that was the problem.

I was given two prescriptions before we could move forward with any sort of medical fertility intervention: gain weight and stop running, or at least limit it to no more than 20 minutes a couple of times a week.

More than a year later, both have been a struggle. I stopped doing Crossfit about a year ago, but I haven’t been able to give up running and lifting at the gym. I’m eating a lot more and have started to feel uncomfortable with the soft, undefined, and slow body despite trying to continue training. Yet nothing seems to work yet.

My workplace insurance recently changed, and I know that fertility treatments are covered 100 percent... up until $10,000 is spent, when we’re on our own. That’s not too bad, my friend, B, who has gone through the process, told me. It might cover one round of IVF.

I was, am, and will be overjoyed for someone I love to be blessed with a child. But I couldn’t help but think: Did we miss our window? Is it too late? Am I too messed up?

I know better. Ten thousand dollars will get me maybe three rounds of injectables and the associated care here in Southwest Florida. But if that doesn’t work, then we’re paying full freight for IUI or IVF. The ringing cash register in my brain places all the more pressure to get my body cycling on its own so we’re not paying thousands of dollars to synthetically replicate mother nature.

In the meantime, no one can tell me how much weight I have to gain or how much exercise I have to cut back or how long I have to do it to get my period back. I don’t know if I will get my period back before the biological clock starts to push us toward methods to manufacture reproductive cycles. And that is driving me crazy.

Really, I don’t want to give up my identity, my outlet, the one thing that has been with me in good times and bad. The peace that a long run or a good race can give. The miles keep sneaking back up. I’m not an elite, but I like when people recognize me as the girl they see on the roads at 7 a.m. almost every day.

But then I think that if I'm to be a mother, there's a lot I'm going to have to give up, so maybe this is a good time to start.

I had always been confused when women with fertility issues say they don't want to hear it when their friends or family members get pregnant, and are unable to bear the sight of baby bumps and gender reveals. Yeah, it sucks not being able to snap your fingers and conceive, but why rain on others' parades?

So when my sister called me last week out of the blue on a Wednesday night, I had no idea what emotions were going to come out. To be fair, I was borderline drunk when she told me she was having a baby.

I had just arrived in Miami for a three-day business conference, starving and on edge. Dinner was two beers, hummus, and fried pretzel bites, so it was kind of a blessing she called as I could sober up a bit.

We talked about what I was doing for work, her job running a restaurant kitchen, and our trip with our brother to Boston in six weeks. Nick already had the Harpoon brewery tour at the top of his to-do list, and I was up for the pilgrimage. Riss, our “pet” little sister, also inherited the family beer-drinking gene, so it seemed like a sensible activity.

“Yeah, I’m not going to be able to participate. I’m, ugh, actually pregnant.”

Thank goodness I was sitting on the sidewalk curb. I rolled over on my back and started yelping, kicking my legs in the air like an idiot.

I was genuinely thrilled for her. But I was also in a semi-intoxicated shock. A lot of people compare the arc of Riss and Kev’s relationship to my and JP's. We both started dating senior year of high school. We both got engaged right out of college. We both got married in a barn.

But while JP and I have been nomads the past eight years, my baby sister and her hubby bought a house next to Kev’s parents. They were ready for a family when we were not — or at least one of us was not.

She sounded nervous and a little overwhelmed, and I guess I would be, too. I didn’t know they were trying or not trying, but open or whatever they were, but the sense I got was that it may have “happened” a bit sooner than they expected. (I don’t know if she ever got the “Be careful. Your dad just had to look at me and I got pregnant,” quip from my mother, but I know the surprise sentiment is common.)

I tried to be the big sister, but in this case I had zero experience to impart. I had to just listen and be supportive. It wasn’t until I got back to my hotel room sobered up that it hit me. That broken feeling.

I was, am, and will be overjoyed for someone I love to be blessed with a child. But I couldn’t help but think: Did we miss our window? Is it too late? Am I too messed up?

And then the thought that underpinned all of those questions: It’s all my fault.

I couldn’t tell JP the news when he called that night. I was surly with him the next evening after a long day’s work, an absolute binge on the cookies and candies in the conference expo hall, and the buffet breakfast, lunch, and dinner. Part of me wanted to binge because I wanted to just get this process over and get my period, but part of me thought the eating was a way to further prove how messed up I am.

“Riss and Kev are having a baby,” I finally blurted. I had no idea how he’d react.

“Oh, was it planned?”

“I guess. I didn’t really get into it,” which is true. The prude in me doesn’t really care to know the details of other people’s bedroom lives, especially my family members.

“How does that make you feel?”

“F*cked up.”

Radio silence. I hate having these types of conversations on the phone.

“I’m going to bed,” I finally said, ending the call. I tried to fall asleep. But I couldn’t.

A couple of days later I called my mom, and we chatted about the news. She asked me how I was dealing with it, and I reiterated I am genuinely happy for them. I’m excited. But she said it was OK if I felt a little sad, knowing that I was avoiding the subject. I started to blubber. Moms are good at poking the emotional bear.

I didn’t want people to think I was jealous or envious. Because I’m not. But I can’t say that I don't wonder if family members or friends speculate on what's up with me and JP, whisper when we are not there, or wonder if there's something wrong with us.

Of course, there's something wrong. Not with us, but with me. And I don’t want people to pity me or judge me for it. I do enough of that.

My infertility isn’t a secret, but it’s not something I talk about regularly. I have a feeling it's going to come up more often, and with more than just my inner circle of family. I’ll have to deal with it, and maybe talking about it here will help me.