Tag: Hypothalamic amenorrhea

Parenting after infertility

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Tuesday was my anatomy scan for my fourth child. (I know this doesn’t sound like a typical infertility post, but bear with me.) I was a nervous mess. My husband came with me but wasn’t allowed into the room because of COVID precautions. My ultrasound tech was a woman of few words, who mostly complained about having to wear her surgical mask all day (another COVID precaution).

Some women announce their pregnancies the second they know about them, with elaborate pregnancy announcements and social media posts. I’m in the other group – moms who worry every step of the way. It’s exhausting. As soon as I find out I’m pregnant I worry that I will miscarry in the first trimester (for the record: I have never had a miscarriage). I hold my breath at every ultrasound until the doctor finds the heartbeat. I worry about the results of my nuchal translucency/first trimester screen (perhaps for good reason: I have tested positive – false positive – for Trisomy 21 twice now). I hold my breath waiting for the cell-free DNA results (normal 3 of the 3 times I have had to take this test). The anatomy scan is the worst, because by 20 weeks I tend to look pretty pregnant so people know, and how would I break the news to everyone that the baby had some terrible congenital abnormality that was incompatible with life? It sounds ridiculous as I am typing this out, but this is the world inside my head. When I was pregnant with my first, I refused to wash any of the clothing we had purchased for him until late in the third trimester. I couldn’t imaging folding it all up and putting it away if something terrible happened. With each pregnancy, I have worried about the baby not moving enough. With my first I vividly recall drinking orange juice at night and jostling my belly around to get him moving. Perhaps that is why he was born a night owl! Just today I took a 5 minute break to lay on my side in bed because I hadn’t felt this baby move in some time. Last year, my best friend lost a baby at 31 weeks. It was every mom’s worst nightmare. My heart aches for her, thinking of how she waited for labor to start days after she had learned that her baby was not okay, and ultimately delivered a stillborn baby. I flew out to see her right after the birth and there were no words to remedy how unfair and cruel the world can be.

My struggles have been minimal by comparison. I had hypothalamic amenorrhea and stopped getting my period for a decade. When I got married and decided to have kids, it (surprise!) did not suddenly make an appearance. In retrospect, I can summarize the story like this: I had hypothalamic amenorrhea and started eating more, gaining weight, and working out much less in order to promote natural fertility. I eventually got pregnant with minimal assistance from a fertility clinic. My subsequent pregnancies occurred without any intervention. However, the period from May 2012 to March 2014 was so more stressful than that paragraph reflects. I had no idea why I wasn’t able to get pregnant. I knew hypothalamic amenorrhea was playing a role but what if (a) it was irreversible and (b) there was something else? What if I would never be a mom? What if I had messed up my body so much that I would never carry a baby?

Once you have had any degree of infertility, you never take being a parent for granted. My first wouldn’t sleep. He had a strong startle reflex and broke through every swaddle combination we tried. He would cry all day and night unless we held him. I remember being exhausted to the bone, crying on the phone to my friend, telling her how guilty I felt for not savoring every waking moment after everything I had been through to have him. This has been my thought process on repeat for every child and for every step of the way. Every decision I have made for them has been fueled by the knowledge that their lives may not have been if things had worked out differently.

I know how fortunate I am to have these children. Once you are pregnant with your fourth (and to some degree your third), people start commenting on your reproductive decisions. “Isn’t the world populated enough?”, “Yeah, probably not a good idea”, “Why would you have another child?”. Quite frankly, it’s rude. In the same way I was hurt and offended when I couldn’t get pregnant and people asked me when I was planning to have a baby, I am hurt and offended by these comments. I don’t push back though – I’m never going to convince people who say those words out loud to consider another viewpoint. I know how much my children mean to me and my husband, and that’s all that matters. Although I would have preferred not to have gone through those years of infertility, I am grateful that they provided me with this perspective.

Nervous Nellie

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I’ve had anxiety most (if not all) of my life. Some of my earliest memories are anxiety-laden:

  • sitting in my father’s car while he was outside talking to my uncle, feeling worried about being alone in the car
  • in elementary school, feeling worried about a state project due in May…during the month of December
  • the night before I turned 10, feeling intense worry that I would never be 9 years old again

I could go on and on.

There were times in my life when my worry worsened. A few weeks to months each year during my childhood when I would be exponentially worried – we began to call these episodes “La Etapa” (a stage of my life). I remember the worry intensifying in high school. I moved to a new school district during my freshman year and I would feel intense dread in the morning when people loitered by their lockers since I didn’t (really) know anyone. I remember hiding in the bathroom during this time, as this was preferable to socializing. I experienced intense anxiety during freshman year of college- fear of meeting new people/would I fit in/etc. I drank too much and gained a ton of weight which only made things worse. My anxiety worsened in medical school, especially on rotations where I had less control over my schedule/time. One way of dealing with my anxiety was through food restriction and overexercising – I could have control over one area of my life, even when everything else was in disarray. I started dieting in high school, so that need has been there for a long time.

I did speak to a few people during these years. In college, someone tipped off a counselor that I may have an eating disorder, and so I started seeing her. She would weigh me facing backyards so that I couldn’t see how much I weighed. I lost more weight when I stopped weighing myself because I was afraid of gaining weight, so clearly the anxiety was still there. I then met with a psychiatrist in medical school, during my surgical rotation, because I was incredibly moody and would break down over the smallest things. I remember running to the first appointment so that I wouldn’t miss my workout that day. He started me on Celexa. I took this for a few weeks, maybe 1-3 months max? My husband (boyfriend at the time) thought it helped, but I wasn’t so sure and stopped shortly after starting. The third time I reached out to get help was when I was struggling with infertility due to hypothalamic amenorrhea. I met with a therapist a few times near my residency program, pretty much crying the entire time through those sessions. That also did not last long.

Why did I “quit” so many times? Probably because I have pretty high-functioning anxiety. It never stopped me from accomplishing my goals or having (mostly) healthy relationships. It’s an ever present background hum, but in many ways it has driven me to succeed. I excelled in school, attended an Ivy League college, graduated medical school and matched into a competitive residency. In other words, even though I personally suffered, my goals did not. I was still able to interact normally with others, connect with/take great care of my patients, and perform daily activities with little interference. However, I have recently started wondering whether things could actually be better. For years, I thought being thin had led me to succeed. Part of the fear of gaining weight was that I would lose everything I had worked for. This was obviously a lie I had been telling myself and the world did not end when I gained weight. And so I started thinking: what if life could actually be better with my anxiety under better control? What would it be like to live in the moment, to not have the ever present buzz of worry, to not feel imminent doom over every little thing?

The other tipping point was this: my 4 year old has started to show signs of anxiety and it is heart-breaking. Yes, it could be hereditary. My whole family deals with anxiety, so maybe it would have been passed on anyway. But I also wonder whether an anxious milieu of the womb or anxious parenting (my husband, too, would factor in here; although normally a very calm person, he is quite an anxious parent) had any effect. I feel intense guilt over this. Although I can’t change anything I’ve done, at the very least I can do my very best to control my anxiety as my kids begin to grow and understand more.

Finally, I think it will be good for my marriage. My husband and I love each other dearly, but our differing personalities (mine characterized by anxiety) have definitely led to some repetitive arguments.

And so I scheduled an appointment with a psychiatrist specializing in women’s health, particularly around birth and motherhood. I met with her last week and she agreed I had generalized anxiety disorder and recommended three pillars of treatment:

  1. Medication
  2. Psychotherapy
  3. Self care

She said we could do any combination, so I am started with medication and trying to incorporate self care into my life. I opted for medication because, if I am truly honest with myself, I am dog-tired. I’m tired of always worrying about everything, of making to-do list after to-do list, of constantly playing out scenarios in my head. It is absolutely exhausting. And I want to get better as fast as possible. My father, a psychiatrist, always said that medication could be incredibly helpful to patients, to normalize their brain chemistry while they utilized psychotherapy to change their thought patterns. I picked up Zoloft right after the appointment and felt a huge sense of relief as I swallowed it. Obviously all of my feelings were still there, but I was relieved to finally be doing something about it.

I am holding off on psychotherapy for now because of the time commitment, but I am trying to do some self care. My family is in town this weekend so it’s a wonderful opportunity. I am taking the time to write this, and I also scheduled a couples massage for this evening. In the past week I’ve made time for mom/baby yoga and a stroller workout class.

And so I am trying and hoping for the very best outcome here.

Trying to conceive

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My two attempts at becoming pregnant went something like this:

Pregnancy #1: Got married, starting trying to conceive (TTC), started to think that I most likely had hypothalamic amenorrhea (HA), was diagnosed with HA, underwent fertility treatment and became pregnant almost 21 months after we started trying. Those are the facts. The reality is that it was an emotional rollercoaster – hope, anxiety, disappointment, anger, sadness. And most of all, terrible fear that I would never be able to have a child.

Pregnancy #2: Oldest was 11 months, period came back naturally (hurrah), and the next month it didn’t come. I naturally thought my HA had returned (especially because I had a negative pregnancy test at 35 days), but I was actually pregnant. Second hurrah! I literally had to do nothing and I pretty much worried 0% about getting pregnant that time around.

And now, here I am. 16 months post-partum (!) and I had expected to be pregnant by now. Although I initially thought my second should have a few more months of being the baby than my first did, I really did want them fairly close together. But now, if we do get pregnant, my last two would be >2 years apart. This bothers me.

It probably bothers me because I am a Type A person and want everything my way. But it also bothers me because I am afraid that maybe it will not be easy for me to become pregnant again. I’m conflicted on this point. First, I feel somewhat selfish for wanting a third child. Is this normal? I have two perfectly healthy children! Our lives are FULL. It’s not like we have oodles of time to fit a third child into the mix. I think about people who are going through infertility struggles for the first time, and I feel terrible for having this blessing and wanting more. How greedy of me! Second, it’s giving me more time to think about logistics, and I don’t want to be dissuaded from our decision to have a third. Financially, emotionally, etc., does it make sense to have a third child?

What it boils down to is this: if we can’t become pregnant naturally (and if we are not able to, I am not sure that I know the reason because I am nowhere in HA land and cycling naturally), would we go down the infertility work-up/treatment road? I don’t know the answer to that.

But this third attempt is bringing up a lot of emotions from my first attempt, and the synopsis of my month is as follows:

Week 1: period is here, wah(!), lots of negative emotions closely followed by attempts at positive thinking and planning for the upcoming cycle (fertility window is X and baby would be born on Y)

Week 2: TTC

Week 3: More TTC, then the 2 week wait begins. This week feels like the calm before the storm – anything is possible but nothing can be done to change what’s coming down the pipeline.

Week 4: Time to type every symptom into Google to see whether it could herald a pregnancy (AND I’m a doctor AND I’m been pregnant twice!). Is nasal congestion a sign of pregnancy? How about back pain? Cramping? Bloating? What about spotting for 5 days…oh wait, that’s just my period.

And the cycle starts again. What else can I say except that it sucks. I think about myself ~5 years ago, feeling so dejected and low. I remember sitting on my “meditation” mat where I was supposed to relax with incense and practice Yoga for Fertility, except I was sobbing. It was a hard, hard time. This time, it is not as hard because the stakes are lower and part of me does feel crazy for wanting to add a third to the chaos of my life. I also do feel incredibly fortunate to be cycling naturally (without birth control) for the first time since high school!

But I am still sitting here wondering whether the new acne I’ve noticed and the low-grade back pain I’m experiencing could have anything to do with pregnancy…and what will I do next week if it is instead a sign of my period?

My experience with hypothalamic amenorrhea

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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.