Raising awareness of Hypothalamic Amenorrhea

There's a lot to be said about the amount of - or lack of - research and studies based on women's health around fitness. Sure, we all hear about different diets and how to get 'summer body ready' but actually, at what cost is this all for?

I've wanted to write a blog post about my own experience with Hypothalamic Amenorrhea for a while now. I know that there is a big community of women out there who are desperately trying to get their periods back after prolonged restriction and exercise addictions, and I want my experience to be of some help to those who are suffering (or to those who might know someone in this position). Throughout this post I will be referring to Hypothalamic Amenorrhea as HA because I for one don't have the patience to type that out every time - let alone spell it correctly! I'd also like to insert a trigger warning here: I will be touching on eating disorders, tracking, and menstrual cycles so for anyone that this might trigger, thank you for supporting this post, I hope you are okay, however, maybe revisit this post a little later when you are ready.

What is Hypothalamic Amenorrhea?

Hypothalamic Amenorrhea (HA) is the scientific term for the absence of the menstrual cycle for 3 months and more. Hypothalamic refers to the Hypothalamus, the part of your brain in charge of your hormones and Amenorrhea simply means lack of periods. There are different types of Amenorrhea, first you have primary amenorrhea, this refers to an absence of periods before officially 'starting' your menstrual cycle, usually caused by being underweight or anorexic. Then there is secondary amenorrhea, which is what I'll be talking about today, this is where you've previously had a menstrual cycle and lost it due to physical stresses on the body. I'm not a doctor and I don't claim to have a lot of knowledge in this field, if you suspect you have amenorrhea then I'd recommend talking to a GP about it. What makes spotting amenorrhea hard is the contraceptive pill - and this is a reason I will never take it - the contraceptive pill gives you a fake bleed and can mask your natural cycle, therefore if you're on the pill, you might not be able to tell if you are suffering from this or not. A lot of the time women come off the pill and their menstrual cycles don't return as normal - this is normal for a few months, however anything longer than this might be a warning sign of having HA. Unfortunately, there are long term effects of HA as well, mostly to do with bone density. The longer you suffer from HA, the higher your chances of being diagnosed with osteoporosis in the future are.

Some of the main symptoms of HA are:

• Missed period(s)

• Low libido

• Feeling cold often

• Depression and anxiety

• Insomnia

• Acne

• Thinning hair and brittle nails

• Increased hunger

• Low energy

One reason why I want to raise awareness of this is the fact there are so many women who might not know that they are suffering from HA due to the masking of the contraceptive pill. A lot of women come off the pill to try and get pregnant and unfortunately don't have the fertility or menstruation to do so. I believe in this day and age, with the fitness industry bigger than it's ever been before, and ridiculously high beauty standards worldwide, women are at risk of damaging their health. I for one have been there and want to raise awareness so that other women don't fall into the same trap that I did.

My HA Experience

My experience with HA started back in my second year of university. I started tracking my calories on an app and working out around 4 times a week. I became obsessed with the number of calories I was eating and the amount I was expending and I found myself stuck in this mental prison, consumed by thoughts about food. In 2019 I lost my periods for 3 months, I did a bit of research and decided to eat a bit more to fuel my workouts. This helped me gain my periods back, but due to my hormonal imbalances, I also gained a lot of weight along with it. I was upset about this weight gain and still in a fragile state of mind. Come October 2019, I started running every single day (sometimes more than 10k at a time) to rid of this weight. Unfortunately I was so consumed by my negative body image that I didn't fuel these runs, in fact, I did the opposite; I started to eat even less. By January 2020 I had acne all over my chin and I once again lost my periods for 3 months. I tried different acne creams and went to my GP about my lack of periods but everything came back as 'normal' and I was told to 'just go on the pill' and have regular weight checks. Knowing that this was absolutely something I didn't want to do, I decided it was down to me to help get myself out of this situation. My initial plan was to slowly increase my calories whilst still working out, however as luck would have it, in March 2020 we entered a global pandemic and I found myself back in my family home in a national lockdown! Unfortunately, the lockdown didn't stop me from running. I was petrified of the idea of not exercising so I still ran twice a week with my Mum. However, my luck struck again when I suffered a foot injury from running and I found myself bound to the sofa, not able to walk! After a few weeks of eating 'normally' (still some restrictive habits) and no exercise, I did regain my periods, however my symptoms were very painful and my menstrual cycle was definitely not regular. I still suffered from insomnia and as I gained weight once again my anxiety and negative body image continued.

In August 2020 I made the decision to fly out to Mallorca to work as an Au Pair. As much as this was something that I'd always wanted to do, sadly what pushed me to make the move was the idea that I could get away from seeing people back home whilst I was going through these hormonal changes. I had hoped that Spain would help me see myself through other people's eyes and give me a new perspective on myself. It certainly did this, and I met some wonderful people whilst I was out there, all people who made me feel seen and showed me my worth. However, unfortunately whilst I was out there I had slipped back into some bad habits in terms of not fuelling for the amount I was doing. I would swim daily, but yet again, I wasn't fuelling it well enough. I didn't actually lose my periods again after this, but the symptoms were still painful, irregular and I still suffered from really bad insomnia. I'd grown used to the person I had become in Spain and felt good whilst I was out there. However when I returned home, for want of a better word: shit hit the fan. Seeing myself in my childhood home mirrors, acne, face swelling, weight gain, hair thinning - the lot. I was the most insecure I'd ever been in my life. I refused to see friends, my own Mum had to force me to leave the house just to see my best friend. I pushed a lot of people away at this point in my life, and there's a lot of regret still around that time for me, but I know with how I was feeling at the time, I wouldn't have done it differently because I was so enclosed in this mental prison of insecurity. I was so low in my own self-esteem that I thought pushing people away was better than to have them realise that they didn't like me anymore. It was the only way I could feel in control of the situation. If you ever find yourself in this position, I feel such empathy for you and tell you to not push those people away; it's only a reflection of how you feel about yourself, not how they feel.

Luckily, after hitting rock bottom, I was done. I was fed up of not sleeping, not feeling like myself and having such low self-worth and self-esteem, it was time to change something. Unfortunately, I couldn't return to Spain after Christmas 2020, as planned. This was due to the pandemic and lockdown situation at the time. Because of this, I had months at home where I decided to put in the work - which felt like not doing anything because 'putting in the work' for me was to stop exercising. I started to eat more, I stopped exercising all together, I felt like I was completely going against the book and that caused a lot of guilt, but the best thing I could do was to remind myself of my why. I no longer wanted to hide myself away and be self-conscious, I wanted to live my life and not lose any more of my 20s. Slowly but surely, after many nights of getting up at 1am to eat food because my hunger levels were insane, I started to get a glimpse of myself again. The turning point for me felt like my 22nd Birthday. I had faced some fear foods and had dealt with 4 months of not exercising. The weight gain started to stabilise and I started to let go of the irrational thoughts that every calorie would amount to weight gain. I started actually sleeping again (!!) and everything else started to fall into place. I started to see friends again, and by no means was I confident in myself at this point, but I was a damn sight better than I had been before and I was no longer just surviving, I was living again.

Over the year, my periods started to go back to their usual 30 day cycle, my face cleared up, the swelling went down and it wasn't until September 2021 that I felt ready to introduce exercise back into my life. I started to go to the gym again - but this time with a much better mindset around food and exercise. I understood how much I needed to eat before thinking about the exercise on top of it and actually accounted for this within my daily life. I started to challenge all of my beliefs around food and found my love for the gym again. I can happily now say, I've been exercising for the past 10-11 months now with a regular cycle. I enjoy my food, I fuel for my workouts, I no longer have worries surrounding food/exercise and I take two weeks off exercise a month to listen to my body around the time of my period. I sleep better and I have my confidence and most importantly - my life back. I have had some issues surrounding heart palpitations and panic attacks - which I never had before - turns out I have a murmur on my heart. I have no idea if this is related to my HA experience, it might be a long term effect from the amount of stress my body had been under but I know how to deal with this and I've had all the necessary checks on my heart to ensure it's nothing serious.

My biggest takeaway from this post is that if you are suffering from HA, if you're trying to regain your menstrual cycle or dealing with low self-esteem: it does get better. The journey is not linear. My experience started back in 2018 and only now in 2022 do I feel like I'm finally out the other side. You have to do the hard work, and at times it feels like it won't happen but it will, your body will do what it needs to do to get everything functioning again, just trust the process, our bodies are so clever. Please don't ignore amenorrhea, it is a huge sign that something is not functioning right within your body and if not treated, could lead to much worse.

If you know someone that might be suffering from anything I've mentioned today, whether that be an eating disorder, exercise addiction, low-self esteem or HA. Please be patient with them and be mindful that their mind is fixated on the food/exercise or even menstrual cycle/hormone narrative. I spent a year of my life so fixated on these issues and it took a long time and a lot of patience to get through it. Please be mindful of what you say, ensure that it's not triggering for that person and educate yourself in how you can support them best. It's a very isolating issue and I hope that this post will raise awareness so that others don't have to go through the same thing. If you think you're suffering from anything I have mentioned, please reach out to your GP - and if they tell you to go on the pill and have regular weigh ins like they did me, know that this isn't the only option and that you are strong enough to fix this issue by yourself.

If anything I have said today has resonated please feel free to message me. One thing I love about my blog is the connections that I have made through it. If you feel this post could help someone you know please share it around - and if you feel this might be you in this situation - don't be afraid to ask for support.

Thank you for reading,

All my love,

Emily x