WHAT IS HYPOTHALAMIC AMENORRHEA? a condition that leads to a missing period.
Before I dive into my story, I figured it would be helpful to give you the basics of what exactly is hypothalamic amenorrhea (besides for the fact that it is a mouthful of words). Amenorrhea generally refers to a missing period, while the hypothalamic part of the condition refers to the cause of it; a missing period due to an issue with the hypothalamus– the hypothalamus being a control center in the brain. Now I am not a doctor, I can simply regurgitate what I’ve learned from reading books like No Period. Now What?*by Dr. Nikola Rinaldi, as well as general in-depth internet/podcast research. So to put it in layman’s terms, as best as I can, when you have HA (hypothalamic amenorrhea, abbreviated), your hypothalamus essentially isn’t getting the right signals from your body to start producing the hormones you need in order to cycle, due to the conditions you are putting yourself in– for example, too much stress on the body.
HA can occur when a number of factors come together to create the perfect storm as it were, and this is what I believe has led me to the condition. However, you can also suffer from HA with just one of these stressful factors. Among the factors that can lead to HA:
- Weight loss of 10 pounds or more in recent time (it can be as “recent” as two years ago)
- High stress, whether that be due to high-intensity exercise that leads to the release of cortisol or else simply being in a high stress environment due to work/life
- Underfueling or food restriction
- Energy balance
Among the factors that DO NOT matter, as tough as it is to hear:
- Being perceived to be at a “healthy” weight
- Being inside a “healthy” BMI range (a normal BMI range is between 18 – 24.9) (I myself was at a BMI of 21 when starting this journey)
This is a quick guide to break down what exactly HA is before I dive into my own story and my own path for recovery below, which is just that: my own. For more information on the condition and a path to recovery, I highly recommend purchasing/reading Dr. Nikola Rinaldi’s book, No Period. No What? or else checking out her website which has a TON of resources.
*My Amazon referral link to the book.
MY HYPOTHALAMIC AMENORRHEA JOURNEY dealing with and recovering from hypothalamic amenorrhea: the dark side of exercise and healthy eating that no one tells you about.
If you follow me on Instagram, which I’m just going to assume you do if you’re reading this, you know that I used to run religiously. Religiously means every.single.day.of.the.week. I would often start my day with 7k-10k run, and it’s something I thoroughly enjoyed doing (let that be known, this was not something I begrudgingly forced myself to do. I wanted to run, I loved it). I hadn’t always been a runner, in fact I hadn’t always loved exercise. I only started my fitness journey in 2017, when I first started running, really to just explore what the health benefits might be, as I was becoming more and more of an advocate for my own health at that time. I just wanted to try it. I quickly fell in love and it’s been an every day occurrence (mostly) ever since. YES I did take the random day or two off, but for the most part I would find my day to be “incomplete” if I did not squeeze in my run any which way I could. I eventually began running in miles (I’m Canadian we do KMs out here), just to sort of trick myself into running further because I would not be satisfied with JUST 3 miles (like, who does JUST a 3 km run??? Psssh I wouldn’t even count the run if it was less than 3 miles).
When I first started to run, although I did not necessarily have any weight to lose, I did drop a few lbs simply because I probably (ok definitely) was not compensating the influx of exercise with additional food. But that was Ok. I liked the little bit of weight loss! And honestly I wasn’t HUNGRY. I never, through out this journey, have felt deprived of food or held myself from eating. On the flip side, I also found cardio to suppress my appetite for whatever reason. So my routine was pretty much: wake up in the morning, and first thing I would do is go for run (on an empty stomach) and then post-run, I may not eat until the early afternoon, as I would be busy rushing to the office and beginning the work day. So food might not hit my body until 11 am, and even that might be considered “early” for me. Thus you can sort of see I would have been in quite an extensive energy deficit, if let’s say I did my typical 10 km run that morning– burning a good 400-500 calories. Which is a lot of calories for me, let alone ANYONE (but I say “for me” because I was already a relatively small person at 5”2 and around 100 lbs — I’ve since gained weight).
This whole time as I dove into the world of fitness (with the SCD diet to follow shortly thereafter), I had been on the birth control pill. I didn’t notice anything abnormal about my exercise or eating, in fact I really felt great. The same time I started running is when I also went gluten free, and of course I eventually went down the rabbit hole of Crohn’s dietary research to find the SCD diet and give that a try – eliminating all grains and refined sugars along with the gluten. I started the SCD diet in November 2018, while continuing my exercise protocols, and I got a FitBit watch to help with my exercise obsession (!) in December 2018. I’m honestly not sure if these two factors played a role in my amenorrhea, but I suspect they did.
First, the SCD diet. Starting on the SCD diet, you do an intro diet which consists of a limited palate of foods, and from there, you gradually introduce new foods back in, one at a time. I think it’s only natural to potentially lose some weight at the start of this diet – I definitely did. I think I went down to like 97-99 lbs at one point. This wasn’t a lasting effect, as I was able to eat more, I gained it all back. However I didn’t change my exercise routine at all during this time to possibly adjust for these factors and generally consider my fuel sources (was I ensuring to eat enough carbs around my exercise? Definitely not. I could have made an effort to eat a banana before and after exercising for example, who knows how that might have helped me in the long run).
The FitBit. I loved the new information my FitBit gave me, my heart rate, my sleep data, and of course, how many calories I was burning every day! I also have an obsession w eVeN tHiNgS, and I go to extremes, perhaps a little bit obsessive in my perfectionism. I do something fully, to the T, or I probably don’t do it at all. That’s what happened with running and with using my FitBit. I began to nEeD to see certain numbers on my FitBit app, I wanted every day to look eVeN (meaning: a pattern of at least 2k calories burned every day for the sake of uniformity). I wanted to reach these daily goals – every time I hit over 2k calories burned, 10k steps etc my FitBit would light up in green. Good work, it told me! It reinforced my nEEeeEd to see certain stats on my FitBit, and it helped me push myself further.
I found it difficult to understand why my period was slowly disappearing until it stopped completely, while I was still on birth control. I wasn’t insanely skinny. I had no issues with food, I’ve never been one for disordered eating, I would eat whatever I wanted, when I wanted. I didn’t even have ABS per se (although at one point I was damn near close and I prided myself on the effort) I was just in good shape. So it was hard to come to terms with this possible diagnosis of hypothalamic amenorrhea??? How could that be me?! I’m healthy! But after reading the book No Period. Now What? by Dr. Nikola Rinoladi, I felt the description of the running and exercise patterns did match my own, and even though I did not purposefully eat less or run fasted, maybe it just happened to work out that way, because life, and I just wasn’t aware how much fuel my body really needed for all the exercise I was doing, because I didn’t possess that knowledge or actively research it.
It was May or April of 2019 that I went off the birth control pill, since my fake pill bleed wasn’t even happening at that point. From there, though, I didn’t change anything. I had yet to read No Period. Now What? at this time, although I did finally schedule an appointment to see my gynaecologist and attempt to figure out what was happening. Besides for that, I maintained my routine. If anything I might have ramped up my running– I began truly running 6 miles daily (10 k)– until I came to a complete stop in January 2020. In the back of my mind I knew something wasn’t right, since not getting your period is a VERY BIG SIGN that something is amiss, that you are not OK. But I didn’t want to change my habits I wanted to keep running, I couldn’t imagine my days without it. It was a stress reliever! Exercise is good for you! Intermittent fasting is good for you! These messages are promoted EVERYWHERE these days, even in the regular mainstream media and outside of a typical health and wellness space.
As 2020 approached, I realized it had been a year since I had a cycle, and I had been doing more research which led me to the book No Period. Now What? and HA in general. I realized it might have been more than a year for all I know- I might have been masking the symptoms even on the pill, because you can still have HA and get a fake bleed on the pill (although for me, it was clearly in a dire situation once even that fake bleed had stopped). Perhaps due to all the information I began to absorb about the seriousness of this condition, not to mention, hey, you can’t have baby if you don’t have a period (!), was enough motivation for me to finally DO. SOMETHING. My first initiative was easing myself into it — I told myself I’d focus on weight training and doing less cardio, as well as making the effort to really eat more. I did this for about a month before I decided to truly go “all in,” which is a description used in the No Period. Now What? book for when you STOP all forms exercise (except for maybe walking and yoga) and EAT eat eat eat. I could have kept yoga in my routine but as I mentioned before I am really an all or nothing person. I couldn’t imagine JUST doing yoga. Yoga is like a bonus to go along with a hard ass exercise (at least it was for me). So I quit cold turkey essentially the first week of January (when everyone else is deciding to go all in the other way – ramping up exercise and diet!).
I want to talk a little bit more about my experience with doctors during this time, and what’s happened there as I’ve been working to regain my cycle. My gyno eventually referred me to a specialist, who has sent me for an ultra sound to see the follicles on my uterus and additional blood tests (which I’ve yet to do). However I had to see my gyno three times before I got that referral (shout out Canada’s health care system), and each time was a bit frustrating. I attempted to bring up my lifestyle factors that I wondered might be playing apart (the SCD diet? Running?)– I wondered about these elements way before I self-diagnosed with HA (I have yet to have a formal diagnosis). She was pretty dismissive though. She prescribed me fake estrogen and progesterone to apparently jumpstart my period (which I’ve since learned is also NOT a THING). After completing just a round of estrogen, nothing happened, so I was prescribed a lengthier round that also included progesterone pills at the end. This triggered a light bleed for a few days. I was told from there, to make another appointment with my gyno in three months time if I did not have my period following this withdrawal bleed. Of course nothing came, so back I went, three months later. This next appointment coincided with my own research and discovery of the book No Period. Now What? In the appointment with the gyno, however, she asked me if I wanted to go back on birth control! What! I said no, I wanted to have a natural cycle. Not mask the symptoms with a band aid, a band aid that didn’t even work last time too. She estimated that it had to do with my hypothalamus based on everything she had seen, and finally gave me an appointment with a specialist before prescribing me another round of estrogen and progesterone. I started to take the estrogen, for five days, before thinking better of it and stopping. The reason was that I had finally begun at this same time to go all in. So I wanted to see if by going all in I would get it naturally! Three days after stopping those pills I got a bleed. It was heavier than the last hormone pill-induced bleed and lasted longer too, five days, and it felt like a pretty legit period but I really don’t know if it was me me me or the estrogen (well, I imagine it was both– before I wasn’t able to bleed at all after just taking estrogen so this was a good sign regardless). I am now on pins and needles waiting to see if I get a cycle this month. It’s really stressful, even just waiting to see if it DOES happen.
Besides for the anxiety of waiting and not knowing when exactly your period will come back, the other disheartening factor in this whole process is the weight gain. No exercise, eating a lot of food = weight gain. My boobs have always been big but with exercise I finally had them down to a “manageable” size. They didn’t feel so massive, so heavy on my chest, they fit into a sports bra! And I no longer needed TWO sports bras to run! Now they have ballooned back up to a much larger and heavier size. I am still just 5”2 so it is a lot on my frame to have triple D breasts. Honestly this has been the hardest part for me– not just the weight gain, but the fact that it’s all in my boobs (this might sound great for someone else but it is really hard on me). It’s hard to see all the muscles I worked for disappear. My stomach is not flat anymore. My jeans don’t fit anymore, like, none of them. It’s hard. I don’t necessarily feel like myself. I’ve read a lot of other women’s stories who explain how they felt better in the recovery process, but honestly I don’t feel that way (yet). I guess it’s all a part of the journey. It’s difficult to deal with weight gain no matter what your size is. I just need to keep telling myself this is what my body needs. This won’t last forever. This is just short-term pain for long-term gain. I know a lot of is in my head. Who else is looking at me and noticing the weight gain? Who of my friends won’t hang out anymore because I gained weight? It’s difficult to come to terms with since it was really part of my identity at this point in my life. It wasn’t ALWAYS but at this point, yes I definitely considered myself a runner and a healthy eater before this battle with HA. I suppose I am still both of those things, although I am on a long-term vacation from running at the moment.
As you can clearly see, I can’t vouch for a recovery entirely, I can only share my experiences in hopes of helping someone else as they go through their own amenorrhea recovery. If you are also dealing with the loss of a period right now, despite being “healthy” for all intents and purposes, you are not alone. The struggle and internal conflict you are going through is normal. You can reach out to me on Instagram @grainfreee, we can swap stories, or else let me know in the comments below about your own journey. It might be a bit selfish, but I too am looking to commiserate with fellow HA’rs, and know that I too, am not alone. Right now though, I have to say it’s been an extremely difficult journey, but I just want to get to the other side. Once I get there, I hope to share another blog post about what it’s like. For now, as I continue to eat as much as I can and NOT EXERCISE AT ALL, I need to keep telling myself: this is worth it, this is what my body needs, this won’t last forever, MY REGULAR CYCLE IS COMING BACK ANY DAY NOW.
WHAT AM I DOING TO RECOVER FROM HYPOTHALAMIC AMENORRHEA? my personal steps to hypothalamic amenorrhea recovery.
Now that I’ve explained how I got myself in my current situation, I wanted to simply cap it off by sharing what exactly I’ve been doing to put myself into a state of recovery and rid myself of HA forever (!!)
- Eating at minimum 2,500 calories per day. I think there are definitely days I eat more than this, since I eat a ton of healthy fat foods– a lot of extra virgin olive oil, avocados, peanut butter, almond butter and nuts in general
- Maintaining the SCD diet – I have not departed from the diet to aid in my recovery. I am certain there are many people who are on the SCD diet and also maintain a healthy exercise habit as WELL as their period. I want to be one of them! If you are one of them, please message me!
- NOT EXERCISING. I cut out all high intensity exercise, but I also cut out ALL exercise. I don’t do yoga. The most I really do is my walk to and from work every day, so I might get in 20-30 minutes of walking max from Monday to Friday.
- Eating as much as I want, all the time. I try to eat within an hour of waking up, and I tend to eat an hour before I go to bed too. I often go to bed feeling full. I often have to eat past physical fullness as I am mentally still hungry. I often feel full.
- Trying to relax. Trying not to stress. THIS PERHAPS THE HARDEST PART! I find it difficult to “do nothing.” I am always trying to do something. But I am really doing my best to have some days where I just sit on the couch/binge-watch Netflix and not attempt to cook or bake in the kitchen, or work on my website to-do list for example. Ugh. This is still a struggle for me! I often worry that I am stressing too much too, undoubtedly leading to more stress.
- Sleeping. I am sleeping as much as I want, and taking this time to sleep the fuck in, since I am no longer waking up at 5 am to hit the gym. I am getting between 8 and 9 hours of sleep per night.
- Taking Acetyl-L-Carnitine supplement, two 500 mg capsules daily – once in the morning and once at night.