I’ve had quite a few people ask about my story; my experience with hypothalamic amenorrhea, recovery, getting pregnant, and what led me to writing my HA recovery book. So here’s the full tale. At this point, I’m recalling events of 10 years ago which in many ways has lessened the emotional sting. If you’re interested in reading about what happened at the actual time I was going through it, you can start here, on my old blog. Anyway…
My journey to hypothalamic amenorrhea (HA) and back was a long time in the making. In high school I was relatively carefree; I had a group of close friends, thought exercising was for the birds, and maintained a ‘normal’ weight without issue. I had participated in softball in middle school but wasn’t particularly good, so my high school sporting career consisted of finding the least unappealing gym classes; volleyball, squash and badminton were my favorites. My competitive urges were mostly satisfied by my flute playing.
In college I took a few ice skating lessons (I had ice skated as a kid but never competitively) and started becoming more active; joining a gym, running, playing tennis – much of it encouraged by my boyfriend of the time. I still mostly ate what I wanted to, again maintaining a ‘normal’ figure – was somewhat proud of the fact that there was no ‘freshman fifteen’ for me.
The next stop on my journey was the company where I’d worked as a summer intern while in college. An up and coming biotechnology company in the Boston area. It was a fantastic place to work as a 20-something; lots of company activities that I now joined in on, like volleyball (still one of my favorites) but I also tried softball and soccer again, among other pursuits. After I met my to-be-husband (at the company-sponsored social hour on a Friday evening), he got me hooked on playing ice hockey. He organized the company’s weekly “pick-up skate” where a group of guys would get together and play a friendly game. I told him one night as he was heading out that it looked like fun and asked if I could join. Mark got his gear from when he was a teenager out of the attic for me. It fit relatively well and off I went. The guys were super nice, no-one ever made me feel like I didn’t belong, and I was totally hooked. I started participating in clinics to improve, and playing on some local teams.
After four years I went to MIT for graduate school. Mark was gone each week from Monday through Thursday on business. That meant I had a lot of free time on my hands, during which I occupied myself with various forms of exercise. I had grown to love my sports and played ice hockey, volleyball, squash with my labmates, lifted weights a few times a week, would bike from home to campus (about 7.5 miles each way), and then we’d golf on the weekends, walking the course instead of riding a cart. All well and good.
Until the labmates I hung out with most of the time decided they needed to lose some weight and were going on a diet. I figured “Hey, I’ve got some love handles I could stand to lose” (and although I didn’t think so at the time I realized afterwards I was also influenced by media images, like Natalie Portman’s abs in one of the Star Wars movies, sigh). So I joined them. They were limiting to 1500 calories a day, I thought that would work for me too; as a female I needed fewer calories, but I exercised more so the equation in my head suggested the same amount would work out well.
Eh, not so much. Well… in the short term I lost a lot of weight. I thought I looked great. I thought I was healthy–after all, you read all over the internet to “lose weight to have a better chance of pregnancy.” I also danced around with obsession. I was tracking all my calories in a spreadsheet, and ended up aiming for a net of around 700 calories a day which I know now is incredibly unhealthy. I was getting a high from seeing the number on the scale go down. I was pulled back from the brink through reading the story of a friend of mine who was going through a very similar experience. She posted about the Minnesota starvation experiment and as I read about the experiences of the men in the study I saw a bit too much of myself. Particularly one night when I woke up at 5am starving. I “allowed” myself a bowl of cereal, and that was a turning point for me.
A little more pullback from my restriction occurred over the next few months as I went off birth control pills with the idea of getting pregnant. Unfortunately, no period resulted.
I went to see my ob-gyn who ran a few tests and suggested that I might want to eat a little more / exercise less, but didn’t give me any solid guidelines. Over the next six months we continued with further tests, and she spoke to a reproductive endocrinologist, finally suggesting that I see her instead. A few more tests and I finally had a diagnosis of hypothalamic amenorrhea.
I did, during those six months, see a nutritionist who gave me caloric target about 700 calories per day more than I had been eating at the height of my restriction. Knowing what I know now, however, I still think that had me at a deficit. She did provide me with some great ways to add calorie and nutrients: switching my daily glass of milk from non-fat to 2% (full-fat is even better, again, hindsight), adding olive oil when I cooked, handfuls of nuts…
When I finally got to see the endocrinologist, she told me that it was highly unlikely that I’d get my period back, especially as I’d been somewhat irregular when I was a teen. So, the plan was that I would start on injections to cause follicle growth and ovulation, after I got back from a three week vacation to my homeland of South Africa.
Well, wouldn’t you know it… during that three weeks I actually had a period! In hindsight, I totally credit my lack of serious exercise during that time (and probably decreased stress). We did quite a bit of walking and played a few rounds of golf, but there was no ice hockey, volleyball, squash, biking, maybe one or two weight sessions when we were staying at hotels, but nothing regular. I *rested*. And ate too. My reward was a bleed, which was particularly thrilling as it came as my sister was announcing her pregnancy to our relatives; we had planned to be pregnant together so the fact that she was pregnant and I hadn’t even ovulated yet was a bitter pill to swallow.
After that vacation I had already scheduled a couple of reproductive endocrinologist (RE) appointments. I went to my first with high hopes, I was on cycle day 13 (right around when you might expect to ovulate in a normal cycle)… they did an ultrasound and I had a 13mm follicles (not quite large enough to ovulate, but almost certainly growing!!!!!!) My second appointment was two days later, so I went in expecting to see that my follicle was growing and I’d ovulate on my own, but no such luck. It was quite the blow, going from the high of “my body rocks, I have an egg growing” to “craaaaaaaaaap, it’s not growing after all.”
So, down the rabbit hole of injectable gonadotropins we went. My first cycle resulted in my period at 10 days past ovulation (dpo) which is early and unlikely to be sufficient for an embryo to implant (known as luteal phase defect, common in women with HA). So we tried again, with progesterone support to avoid the luteal issue. Another BFN. Followed by two more. I was incredibly discouraged – I’d gained weight (to more than where I started), cut my exercise, and couldn’t even get pregnant when my body was made to ovulate. I was convinced that I would remain childless, which I had thought would be fine when I was not staring the possibility in the face. Now? not so much. I was in one of the darkest places of my life. We made the decision to move forward with IVF, despite my convictions that it would just lead to more disappointment.
We had to wait a month for insurance to kick in. In the interim my doctor wanted to put me on the pill but I declined. I thought I might as well give my body a shot in the meantime and doing daily testing of my hormones (using ovulation predictor kits, OPKs) and taking my temperature gave me something to do to pass the excruciating time.
I didn’t expect anything to come of it. It really was just to make the 60 days or so go more quickly and give me something to occupy my data-driven mind with. Well. Come cycle day 42, I went through my usual routine of peeing on my OPK and to my complete and utter astonishment, it was positive. I was afraid I’d missed the window of conception as my temperature was already somewhat elevated, but woke my husband up to make an attempt at pregnancy anyway, just in case. The next day the OPK was positive again, temp was back down, so holy freaking sugar-balls, I was ovulating all on my very own! The third day the OPK was negative, day after that my temperature was way up so my body had come through big time. I had OVULATED! (Note that “normal” ovulation occurs on CD 14, that is 14 days after the first day of your period – this was cycle day 44!!! Actually fairly typical during hypothalamic amenorrhea which is not commonly known.)
I waited and waited, felt some symptoms (like cramping at around 6dpo) that were different from my other cycles, but at this point I was not expecting anything, I was just so stoked that I’d managed to ovulate. At 13dpo I took a pregnancy test I’d bought the night before and to my complete and utter shock, the result was definitive. I was pregnant!!
When I was about 25 weeks pregnant I felt some strange tightenings in my stomach that didn’t seem right to me, and they seemed to be coming fairly regularly. I ended up going to the hospital, and it turned out they were “Braxton Hicks contractions” which are not atypical during pregnancy, but they were much closer together than the doctors liked to see (2-3 minutes at some points!) This continued for the next few weeks, ultimately resulting in hospitalization at 28 weeks for a few days to give me magnesium sulfate to relax my uterus and allow time for steroid shots to mature the baby’s lungs in case s/he was delivered early. (We were team green). After that episode I was put on “modified bedrest” essentialy meaning that I could go to work, being as sedentary as possible, and that was about it. No more walking to my doctor’s appointments, no more walking to deliver interoffice mail, no more golf (boo)… which left me with a lot of free time.
It was then I was introduced to the hypothalamic amenorrhea forum on Fertile Thoughts. I joined, found a community of women going through exactly what I had, and started sharing my knowledge. I’d also do more research as questions came up, advising other women both on what to do to recover as well as fertility treatments. Pretty soon I became the mother hen of the Board, supporting everyone who came through in their journey to recover and get pregnant. I had found my passion. I loved sharing my knowledge and encouraging others to find balance in their lives as I had managed to do in mine. I spent all my free time on the Board, checking and posting multiple times a day. After years of this, the women started telling me that I should write a book; and you know how that story ends. My No Period. Now What? book contains basically everything I know about hypothalamic amenorrhea, its consequences, how to recover (not just recovering periods but also learning to live a balanced life with eating and exercise taking a back seat to actually living), tips about fertility treatments, pregnancy (and unfortunately miscarriage), and continuing to live a fulfilling and balanced life after pregnancy.
Are there any other questions you have about my journey? Or anything else you’d like me to post about?