My experience with hypothalamic amenorrhea

I started reading blogs when I began to suspect that I had hypothalamic amenorrhea (HA), so it is only fitting that one of my first posts should touch on the subject.

First, some background for readers who are not familiar with HA. Amenorrhea is the absence of menses. It can be divided into primary (a person never menstruates) or secondary (a person who previously menstruated stops menstruating). Secondary amenorrhea can develop when any of the structures involved in the menstrual cycle (hypothalamus, pituitary, ovary, or uterus) are affected. Hypothalamic amenorrhea with no pathologic basis can be triggered by nutritional deficiencies (including eating disorders), excessive exercise, and/or stress.

I developed hypothalamic amenorrhea because I ate too little and exercised too much. For many years, I focused excessively on what I ate and how much I exercised. I counted calories, drafted lists of my daily intake, and worked out 5-7 days a week. Not for a week, not for a month, but for YEARS. Approximately 10 years to be exact. I stopped menstruating 1.5-2 years into this routine, which means that for 8-8.5 years I did nothing to reverse it. I am not proud of that.

It is important for me to back up a bit and detail how this came to be, as it was never my intent to sabotage my fertility. My initial goals of eating clean and exercising regularly were borne out of a genuine desire to be “healthy”. I was a freshman in college and not feeling particularly great about many things – where I fit in socially, the freshman 15, my utter lack of exercise, being away from home, and my future career aspirations. So I tackled what I could: eating better, exercising more, and focusing on my pre-medical training. At first, it was wonderful! I started eating better, hitting the gym daily, sleeping more, waking up early, performing better academically, and feeling good about myself. But true to form, I didn’t stop at good. 5 pounds became 10, 15, 20, 25…I ultimately lost 60 pounds over the course of one year.

The thing is, I didn’t have 60 pounds to lose. I also became incredibly anxious about gaining the weight back. So when I stopped menstruating, my response was not “Hmm…I should ease up on exercise and gain some weight.” I was terrified to gain weight, and indeed gained only enough weight to shift the focus one iota from my excessive loss. And for the next nine years, that weight became my “norm”. As I distanced myself from college, everyone I met assumed that I had always been so slim. This made it harder and harder to gain weight.

I knew that my lack of menstrual cycle was a sign that something was wrong, but I didn’t want to dwell on that. I ignored the worry when we learned about the female athlete triad in college, when the nurse I saw at the student health center ordered a bone density test based on my low BMI, when my gynecologist checked labs and confirmed what I already suspected: I wasn’t ovulating. It gnawed at me, but I ignored it because I was 19 years old and the only thing I knew about pregnancy at the time was that I didn’t want it. What I did want was to continue fitting into a size zero.

Here’s the deal: if you don’t fuel your body correctly and if you then ask your poorly fueled body to draw from its reserves to exercise, it may shut down your reproductive system. And that’s exactly what happened. I remember my gynecologist recommending birth control pills and then saying that I would possibly need fertility treatments in the future if the amenorrhea persisted. We didn’t discuss my undereating and overexercising (I do not blame this on the gynecologist as I am fairly certain I did everything in my power to downplay how much I was exercising and to normalize my weight) and I went about my merry way, which is to say that I did nothing other than start birth control.

Fast-forward those nine years. I had graduated college, graduated medical school, and was a resident. I had gained a handful of pounds since my lowest weight in college, but my BMI was still low and I ate less than I should for the amount that I exercised. I was getting married and had stopped my birth control pill because I wanted to see whether I would menstruate on my own, since I knew that I wanted to get pregnant shortly after the wedding. To no one’s surprise, I did not get my period.

Four years and two babies later, I can still feel the raw frustration and immense sadness I felt during this time. How was it fair that bone-thin celebrities and acquaintances had managed to conceive without gaining weight? How was it fair that some women in the HA community were able to begin menstruating by only minimally decreasing their exercise and just barely increasing their weight? I fought against the “decrease exercise/increase weight” advice SO hard. I wanted to believe that it was stress (I was a resident after all) and turned to yoga, meditation, breathing exercises. I added “healthy fats” to my diet but only incrementally decreased my exercise. I had maintained my weight loss for nine years and resisted gaining weight, believing that it would negate all of my hard work.

However, my resolve wavered with each month that passed without a period. It was a confusing time and I felt torn between two forces – my long-standing commitment to what I had perceived as healthy (working out, eating “clean”, being thin) and my desire to become a mother. I slowly let the pounds pile on – at first, slowly and with remorse, and later quickly and without hesitation. I would plan my meals and then rebel, knowing that I was still adhering to rules. My main form of exercise at the time was long distance running, so I stopped. I would sign up for races, train irregularly, and then cancel. I joined different gyms and then willed myself to sleep in. I stopped waking up at 5:00 am to work out. The pounds piled on and I finally forced myself to buy new clothes. I donated bags full of clothing that no longer fit: I needed them visually out of my closet and physically out of my life as I didn’t want to be tempted to fit into them again.

During this time, multiple co-workers asked me whether I was pregnant. They were used to my being very thin and health-conscious, so pregnancy was a logical assumption as they observed my weight gain. Their questions were doubly insulting: first, they confirmed that others noticed I was gaining weight (this horrified me) and, second, they forced me to answer “no” when I was dying to answer “yes”, to actually be pregnant. My heart would break every time someone asked me whether we were planning to start a family. I know they meant no harm, but I wish they would have thought twice about prying. To this day, I never ask anyone about their plans to start (or expand) a family and I never ask anyone whether they are pregnant – not even if they are very obviously 9 months pregnant.

At the time, it also felt like everyone I knew was becoming pregnant. I was genuinely thrilled for my friends, family, and acquaintances, but I would also cry whenever I had to attend a baby shower or congratulate yet another person. I am sure that my husband dreaded announcing someone’s pregnancy to me.

During the time that I was struggling to gain weight, rein in my exercise, and feel good in my newly expanded skin, I was referred by a new gynecologist to a fertility clinic. At this point, the diagnosis of hypothalamic amenorrhea had been confirmed by ruling out some other entities via laboratory testing and imaging studies. The first fertility specialist I saw said this: I could stop running and gain weight or I could undergo intrauterine insemination. I agreed with his exercise and weight gain recommendations, but our personalities didn’t jive and I wanted to minimize interventions, so I sought a second opinion from someone else in the same practice.

This fertility specialist was my saving grace. He was a kind, gentle man with a wonderful bedside manner. He had been in the business for years and had an optimistic perspective. He also did not push any interventions. I recall him sitting patiently during our appointments and answering all of my nervous questions. One day, he sat across from me and gently said: “This must be a very difficult experience for you – wanting to become pregnant, living far away from your husband [we lived 8 hours away from one another during my medical training], enduring the stress of residency.” I burst out crying. It felt like he truly understood what I was going through. He also provided a bright glimmer of hope when he told me that I was not infertile but SUBfertile. He believed that I would have a baby and I believed him.

I have noticed a lot of doctor-bashing in the HA world: doctors not understanding the diagnosis of HA, not counseling on weight gain/exercise cessation, pushing interventions to make money, not listening, etc. As a physician in the world of Google Medicine, I wonder whether some of this is unfair. Going through any type of infertility (or sub-fertility, as it may be) is an inherently emotional process that can taint our perception. There is also an urgency to it – and this may create dissatisfaction in a system that necessitates testing to rule out other entities, awaiting a specialty consult, multiple procedures, etc. Since there is no specific test that can attribute HA to exercise and eating habits, other diagnoses need to be “ruled out” before this can be “ruled in”. Even then, there is no test that 100% proves causation. I would like to think that doctors are educated in this complex realm and are providing the best possible assessment and treatment to these women. That being said, I recognize that my own perception is biased due to my truly wonderful, attentive, and supportive fertility specialist.

So what did I do? How did I finally become pregnant? When I had HA, I was constantly looking for the magic formula – just how much weight would I need to gain? How much exercise was too much? The truth is, everyone is so very different and there is no one size fits all “solution”.

To this day, I joke with my husband that I became pregnant after purchasing this bracelet. I did, but I also reduced my exercise dramatically (from 5-7x/wk to maybe 1-2x/wk), gained 30-35 pounds, slept in, practiced yoga (including Yoga for Fertility), started acupuncture, and underwent 4 cycles of clomiphene citrate and 1 cycle of letrozole. It was on that fifth cycle that I became pregnant with my first. I sometimes still think of him as my letrozole baby.

However, the most important (and most difficult) change I made was to stop caring about my weight. This was a slow and painful process. Letting go of the pressure and anxiety to be thin was hard. It feels so silly for me to say this now as I truly can’t believe that I spent so much time obsessing about something so trivial, especially with all of the very real problems in the world. Yet at the time, it was strangely important to me, and overcoming that mindset took strength and perseverance.

I loved being pregnant and I love being a mother. Every moment of pregnancy (x2!)and every moment of motherhood has been all the sweeter because there was a time when I truly doubted whether I would be able to have a baby. I know that I was very fortunate: I didn’t battle infertility for longer than 2 years, it was (relatively) rapidly reversible, and only minimal intervention was necessary. I was spared the financial and emotional consequences of undergoing more invasive fertility treatments. But any degree of infertility (or sub-fertility) takes its toll, and my heart truly goes out to everyone currently going through it.

After my first pregnancy, I never resumed working out regularly. I would exercise sporadically here and there (a slow run/walk, a family hike, a yoga class, a stroller work0ut), but never with the same intensity and commitment. My reasons were varied: I experienced “working mom guilt” and didn’t want to spend time away from work at the gym when I could be with my baby, sleep deprivation/low energy, fear of affecting my milk supply/production, and the desire to have another baby soon after the birth of my first. I also worried about whether I could truly exercise in moderation. Despite this, I lost my pregnancy weight quickly while eating everything under the sun. I also regained my cycle at almost 11 months postpartum (while still nursing) and was pregnant a month later with no medical intervention.

If you are struggling with HA, please know that there is so much hope on the horizon! There are also a number of wonderful resources out there, including:

  1. Nico’s blog is a must-read. There is a wonderful community of women formed around it, and also a book.
  2. This lovely endocrinologist’s post, linking to her personal experience
  3. Ashley’s older blog posts
  4. Janae’s perspective

And do feel free to contact me if you have any questions. I am by no means an expert in this field, but I can certainly commiserate.

2 thoughts on “My experience with hypothalamic amenorrhea

  1. Culliflower says:

    Thank you for your post! I have a very similar history (8 years no period now) I am not yet trying to conceive but i reallyyyy want my period back and need all the motivation i can get. I stopped exercising altogether 2 months ago and I am eating more than ever. I just hope i am on the right track its so hard to know except reading stories like yours so thank you again 🙂 Amy x

    Like

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