It’s time for another hypothalamic amenorrhea recovery story. I hope you find these stories inspiring and that they help you to stay on track with your own recovery.
The goal of these stories is to keep you on your recovery track and working towards your prize – your period and your health! If you missed the earlier amenorrhea recovery stories, you can find them here:
Lindsay: “There’s Now More Freedom In My Life!”
Brandi: “It Wasn’t As Scary As I Thought.”
Christina: “If You’re Obsessed with Exercise, Give It Up. Now!”
Jill: “Running 50+ Miles in the Weekend in Addition to Weekly Mileage Wasn’t Smart For Me.”
Amy: “I Was Sick of Feeling Anxious, Tired, Irritable and Having No Libido.”
Anna: “I Would’ve Gained 50+ If That Meant Finding My True Health.”
Today’s story is from Leila. She went through a severe eating disorder, which isn’t rare at all among women with hypothalamic amenorrhea.
But the way she was able to take her health in her own hands, switch gears and fully commit to recovery is SO amazing and powerful. If this story doesn’t inspire you, then I don’t know what will! Happy reading!
Before we get to the story, here are some facts about Leila’s recovery:
- She had hypothalamic amenorrhea for 16 months
- After going all in, it took her 6 weeks to restore her cycle
- Her BMI went from 18.3 to about 20, but she doesn’t know for sure because she doesn’t weigh herself
- She has had 17 cycles by now!
Now, to the beginning of the story…
When did you realize that you had hypothalamic amenorrhea? Were you aware of the effects on your health?
Before getting an official diagnosis from an endocrinologist, I had a gut feeling I had hypothalamic amenorrhea when I was researching on the internet one day after receiving my lab results. I remember typing “low LH level” and hypothalamic amenorrhea was one of the first things that came up. I refused to believe that such a diagnosis applied to me because I was in the healthy BMI range. As a result, I refused to make any lifestyle changes despite this hunch.
I was not aware of any of the effects hypothalamic amenorrhea had on my body, and even after coming across it briefly on the internet, the effects of it were not well-documented.
Were you an over-exerciser?
Exercising was never my main issue, however to an extent, I was a busy bee. I always felt like I had to keep moving, whether around the house, at school, or at work just to keep burning calories.
What was your relationship with food like? Did you restrict, count calories/macros, were on diets often, etc?
I was terrified of food and gaining weight.
I spent all day thinking about what to eat, when to eat, and how many calories I’ll consume in the entire day. I regularly categorized foods into “bad” and “good” and became afraid of eating anything in the “bad” category to the point of having nightmares about eating pizza. I would wake up in the middle of night sweating and petrified at the thought of it becoming a reality.
I was afraid of eating anything in the “bad” category to the point of having nightmares about eating pizza.Click to tweet
I was obsessed with doing any activities related to food (e.g. grocery shopping, watching cooking shows, cooking for others) as long as I didn’t have to eat it myself. It was my way of compensating for the things I couldn’t fully enjoy because of eating disorder.
At my worst, I checked every food label and added up calories in my head effortlessly and automatically. I tried to eat 1200 calories or less every day because, believe it or not, I was told by a doctor at one point that that’s an acceptable amount to easily maintain my body weight.
My doctor told me that it’s okay to eat 1200 calories a day to maintain my bodyweight.Click to tweet
I memorized (and to this day still do) calories for foods that I ate regularly. I also checked my weight every day or every other day after engaging in ritualistic behaviours to ensure the lowest number possible (e.g. having a bowel movement, not eating or drinking before, and weighing naked on the exact same bathroom tile each time).
I weighed myself naked, without having had any food or drink, on the exact same bathroom tile every day.Click to tweet
I never ate white carbs, and rarely ever ate “junk food” in the fear of weight gain. I also never ate out in fear of unknown calories, and of course weight gain. I also avoided dairy by using my VERY mild lactose intolerance as an excuse. Everything with fat had to be skim or light.
At my lowest point, I stopped eating carbs all together (except for fruits) as well as dairy. I was consuming only seafood, chicken, nuts and seeds, and veggies.
Was there any point in your life where you lost a significant amount of weight?
The weight loss that led to my hypothalamic amenorrhea was completely unintentional and happened gradually throughout my 4 years at university. I lost around 10 pounds, but being already quite slim and small, it was considered quite a bit.
The weight loss did not affect my periods until it was combined with the intense stress of moving to a new country for a new job and being on my own for the first time. I was also walking a lot to get around upon that move and that contributed to further weight loss.
While there however, I fell in love with the local cuisine and I quickly gained 20 pounds in 3 months. Upon noticing this and already being in a fragile state of mind, this is where eating disorder started. I began (extreme) dieting right away in the fourth month and started doing intense cardio 40 mins a day every day. I ended up losing all the 20 pounds I gained in 7 weeks because of this crazy regiment.
What was your main reason to start recovery?
I was tired! Mentally tired that is. Calorie counting and anticipating day in and day out what number the scale would read was driving me nuts.
I decided I cannot live my life this way anymore because I was tired of striving for better that never came. No matter how low the number was on the scale and no matter how little calories I ate in a day, the euphoria was temporary. I was always losing to eating disorder no matter how “well” I did that day.
When you found out that you’ll need to stop or significantly reduce exercise and eat more, what was your reaction? Were you okay with it or did you try to fight it, find another solution?
Relief! I was in a state of relief and almost salvation, like I had nothing to worry about anymore and I can just live my life normally and become the happy and carefree woman I always was.
Starting recovery meant that I could live my life normally and become the happy and carefree woman I always was.Click to tweet
Having come across HA before my official diagnosis, it was a true blessing to finally receive some answers. It was honestly the start of a honeymoon in a way because I finally had a REASON to eat that eating disorder could not argue with. I gave in immediately and began eating everything I craved. I completely surrendered to the “all in” process.
I cut out all exercise waaaay before I got my diagnosis, but I was still restricting so my body did not have a chance to heal at all. I started taking naps everyday instead of exercising and I think that helped a lot once I stopped restricting.
How did you change your eating? Give us some examples.
I ate whatever I wanted, whenever I wanted! If I wanted seconds after having a full meal, I had some. If I felt hungry 15 mins before bed and felt like chocolate, I went and got some. I listened to what my body wanted and gave it exactly that.
When I felt doubtful about my hunger signals (e.g. “am I still hungry?” Should I eat now or in another hour?” etc), I ATE! No second thoughts.
I realized that the fact that I am contemplating this so heavily means that there is some work that needs to be done around anxiety around food and so I tackled that anxiety head one by doing exactly the opposite of what the eating disorder voice was telling me.
I decided to do exactly the opposite of what the eating disorder voice was telling me to do.Click to tweet
More specifically, I switched to 2% milk and dairy (as opposed to skim), began eating white carbs again and ate every two hours or so throughout the day. I also made sure I never skipped a meal (especially breakfast) and NEVER went to bed hungry!
If you were afraid of gaining weight, what particularly was so scary about it?
I was scared of weight gain that would never stop and that I would become someone people would not recognize.
Growing up, I was always complimented on my naturally slim figure, and I became afraid that if I gained weight, people would not find anything attractive about me anymore.
Specifically, I was also afraid of the weight gain going directly to my face which would be very easily noticeable for people to comment on.
Was there anything else you did to speed up recovery?
Massages! Even though it was only once a week, it made a huge difference for me especially with the anxiety, fear and uncertainty that comes naturally with eating disorder recovery.
I also forced myself into situations that would challenge my eating disorder, regardless of how anxious it made me feel. I met up with friends for lunch. I went out with family to places eating disorder had forbidden to go to like ice cream shops and bakeries.
I journaled every night about my fears, my worries, the good, the bad….basically everything that came to my head about this process! I didn’t just stop there though, when I wrote negative thoughts down, I countered them with positive thoughts and aspirations. I made sure that every entry ended with a clear reference to WHY I was doing this and why I want to get better.
When I wrote negative thoughts down, I countered them with positive thoughts and aspirations.Click to tweet
And most importantly, reading success recovery stories on the fertilethoughts forum and the hypothalamic amenorrhea facebook group made all the difference! I read stories of women who had hypothalamic amenorrhea for years and were able to regain their cycles and get pregnant, and I knew that if they could do it, I could do it too!
Buying new clothes and getting rid of small/old clothes made all the difference. If something made me feel like I was a stuffed in a sausage casing, I threw it out….no second thoughts. I got new clothes that I felt great in, and in sizes that I fit my new body, not the body that I hope to have one day.
ALSO STOPPED WEIGHING MYSELF! Threw the scale to the curb!
What kind of positive changes did you notice during recovery?
Mood! My mood got so much better. I felt that I was no longer as anxious the deeper and longer I was in recovery. I felt calm, serene, hopeful and just happy with the smallest things around me!
Sleep. My sleep became more regular and deeper. I was no longer waking up in the middle of the night and having problems falling asleep.
Thyroid function. I was told I was hypothyroid the entire time I had HA. The fact was simply that when the hypothalamus is not functioning as it should, it impacts thyroid function as well because it is also not signaling the thyroid to do its job properly. I was put on Synthroid, and while it worked, it was simply treating the symptoms of hypothyroidism. Six weeks after going all in, my thyroid levels normalized naturally.
Skin, hair, and nail health. My hair stopped falling out and started to look healthy again and less dry. My nails began growing and became stronger, and my skin was soft and smooth again.
Body temperature. I was constantly cold when I had hypothalamic amenorrhea and eating disorder. As I gained weight and my body began storing and using fat for insulation, I no longer felt cold at odd times. I began to feel temperatures normally.
Now as you’ve restored your periods, what else has changed about you?
I am more aware about diet culture and the ways in which health, fitness, and diet fads are portrayed to women as “normal” and appealing ways of life.
I have become more critical of the formulas of weight loss perpetuated to us, and realize that the perfect body is an illusion.
I have also become more critical of diet trends that are sold to us as healthy lifestyle choices such as sugar free, low-carb or ketogentic that have detrimental impacts on women’s fertility and mental health.
I feel that because of the physical and mental journey I have endured as a result of hypothalamic amenorrhea, I have become less vain and shallow and more focused on being kind and compassionate to myself and other women. I feel that this journey has allowed me to grow as a person and appreciate what matters most in life- health, both mental and physical!
What is the biggest lesson you learned from this journey?
You do not need to look skeletally thin to have an eating disorder or to seek help for it. Hypothalamic amenorrhea and eating disorder can happen to women of all body sizes and all backgrounds!
The most important thing I learned from this journey is that I am SOOOOO much more than a number on the scale, or a pant/dress size. I have so much more to offer than just being thin! And while my mind has been programmed by eating disorder to think that I am nothing without thinness, I KNOW that’s not all others see when they look at me now.
I offer so much more to the world than just a body to look at. I became truly happy once I stopped investing all my self-worth in my appearance and body!
Thank you for sharing your story Leila!
If you too are suffering from hypothalamic amenorrhea and want to beat it (you should!), the 5-Step Overtraining Rehab Program will help you.