4 In Body Image/ Personal Growth/ Real Life

How I Recovered From Hypothalamic Amenorrhea

How I recovered from Hypothalamic Amenorrhea

As many of you probably know after reading My Fertility Journey Part 1, I suffered from Hypothalamic Amenorrhea or “HA” for 10 years without even knowing it.

I was on birth control from age 16 until age 28, which masked my lack of period for god knows how long. I only discovered its absence once my husband Mike and I decided to start trying for a family.

Had I known what I know now, I would have started to make changes in my lifestyle a LONG time ago. However, I can’t change the past and I hope that my experience will help you right now, so that you do not have to suffer the same way I did.

I’m going to start by sharing my struggle with HA, then discuss exactly what HA is and how I recovered with some tips that will hopefully help you if you are struggling too.

Let’s start by jumping back to around 2008

How I recovered from Hypothalamic Amenorrhea

I had already been on birth control for about 4 years, which I started because I used to get very painful periods – but as far as I can remember they were fairly regular and nothing seemed abnormal besides the amount of pain I was in.

As the years went on, I switched contraception brands until I finally found one that worked for me. 

In 2008 I was in my 2nd year of University. Before this time, my weight had fluctuated a lot. I clearly had an eating disorder. I would go through periods of extreme calorie restriction followed by a period of overeating to the point where I felt physically ill.

I remember at one point sleeping all day and only waking to eat one meal – a small veggie wrap for dinner. In my 5’7″ frame I was down to 127lbs. However, in that same year I remember eating a full meal and following that by a whole bag of chips, with cookies and sandwhich. At that point, I had almost reached 150lbs. I remember not being able to look at myself in the mirror that summer.

How I recovered from Hypothalamic Amenorrhea

Meanwhile, I would workout excessively during the times I would restrict food, and then again after I’d binge. I can recall countless times telling myself I couldn’t get off the treadmill until I had burned at least 1,000 calories.

This cycle of restricting and binging went on for several years and then finally started to level out a few years after getting together with Mike. I switched to eating very restrictively during the week and only binging on the weekends. Then it went to only binging on one weekend day to eliminating them all together. I had been allowing myself to eat more during the week at this point, while still keeping a close eye on my calorie intake and tracking everything. I still had the odd binge episode but they were becoming less and less frequent. However,  I was still exercising obsessively 7 days a week, and my body weight had levelled out around 135lbs.

Let’s fast forward to 2015 – the year of the wedding

How I recovered from Hypothalamic Amenorrhea

I had been doing really well in terms of stabilizing my weight and then it all started up again once the wedding was approaching.

  • The calorie restriction got tighter where I would only consume 1200-1500 calories/day including the weekends
  • The exercise routine got heavier where I would workout out 2 or more times/day 7 days/week

You can see how this is just a recipe for hormonal disaster. But I had to look my best and I remember feeling so determined to get to my goal of weighing 125lbs. Which I did. All the while my birth control had masked the hormonal imbalances I was causing as a result of my “healthy lifestyle”.

How I recovered from Hypothalamic Amenorrhea

After the wedding – surprise, surprise, I ended up gaining almost 15lbs on our 3 week honeymoon to Italy…. :\ When you restrict for so long, you eventually lose control and that is exactly what happened.

From 2015-2016 the food restriction and exercise addiction only got worse

How I recovered from Hypothalamic Amenorrhea

This is when I got into the Pilates world. A world dominated by tiny dance figure bodies. I felt like I didn’t fit in. I had to shrink my body and I had to do it fast in order to fit in and be a credible teacher to my students and peers. 

So I shrank, and I shrank fast. From 140lbs after our honeymoon in September 2015, I hit 120lbs by summer of 2016. And my weight was stable around 120lbs. I was so proud of myself. All I had to do was eat the exact same pre-measured food for breakfast, snacks and lunch with only 1 square of dark chocolate after dinner and bike back and forth to work twice a day and workout twice a day (running, lifting weights or doing Pilates) while taking Allen for 2-3walks/day.

I mean, that sounds like a super realistic workout schedule right?? 

How I recovered from Hypothalamic Amenorrhea

WRONG. So wrong.

I thought I was doing everything right. Eating every superfood you could imagine, having green smoothies, working out and being as fit as I ever had been before. So when I decided to go off birth control in late 2016 and I didn’t get my period for 4 months, I knew something was wrong.

After doing a lot of research I came across something called hypothalamic amenorrhea. As soon as I read the description I knew I had it:

Hypothalamic Amenorrhea:

Hypothalamic amenorrhea is associated with:

  • bone loss,
  • dry hair and skin,
  • digestive issues,
  • feeling cold,
  • exhaustion,
  • poor sleep,
  • decreased sex drive,
  • increased risk for heart disease. [1]

According to leading hypothalamic amenorrhea researcher Dr. Nicola Rinaldi[1], a combination of five factors can lead to women developing this condition:

  1. Exercise: While the amount of exercise among women who develop hypothalamic amenorrhea can vary widely, many women with this condition share a love for high intensity exercise combined with inadequate fuelling for activity levels.
  2. Under-eating: Regardless of how much you weigh or what you look like, eating too few calories for your activity level can be stressful for your body. Women with hypothalamic amenorrhea often restrict calories or food groups and can be preoccupied with eating “clean.”
  3. Weight and weight loss: We usually associate hypothalamic amenorrhea with women who are very thin, but it is possible to develop this condition at higher weights. However, hypothalamic amenorrhea is more common among women with BMIs around 20 or below. Significant weight loss (10 pounds or more) can be a trigger for hypothalamic amenorrhea—even if ending weight was still “normal.”
  4. Stress: Physiological stress can be a factor in developing hypothalamic amenorrhea (and exercise can be interpreted by the body as a form of physiological stress). When chronic stress is combined with intense exercise and insufficient calories, it can result in a potent ovulation-suppressing cocktail.
  5. Genetics: A few recent studies have found that some women may be more susceptible to developing hypothalamic amenorrhea than others.

Essentially, in a normal menstrual cycle the hypothalamus (the part of your brain that regulates sleep, hunger, body temperature, and your menstrual cycle) releases gonadotropin-releasing hormone (GnRH), which stimulates the release of luteinizing hormone (LH) and follicle-stimulating hormone (FSH)—both hormones essential in the ovulation process. In a woman with hypothalamic amenorrhea, the hypothalamus doesn’t release as much GnRH. As a result, there isn’t enough LH or FSH for ovulation to occur. And thus, you end up with lots of small follicles on your ovaries that never mature enough to release a real egg and as a result you don’t get a period. This is why it is easily mis-diagnosed as PCOS.

After seeing my family doctor and running some blood tests and diagnostic ultrasounds, I was referred to a fertility specialist who diagnosed me with PCOS/HA, as well as a Septate uterus in early 2017. (If you want to learn more about how septate uterus and my whole fertility journey, please check out this article).

My LH/FSH/Estrogen/Progesterone and Testosterone levels were almost all zero. I had no sex hormones. No wonder I had no sex drive, felt cold all the time and had no period.

My body was trying to just survive, let alone be able to make a baby.

How I recovered from Hypothalamic Amenorrhea

I knew I had to start making some changes in order to get my health and my fertility back. 

*I will add that having a goal, like being able to have a baby made this process easier for me, I think. It’s hard to see your body change in any circumstance, but having a really good reason to gain or lose weight makes it so much more attainable and helps ease some of the emotional aspect of it.

Here is everything that I did in the year and a half before ultimately being successful and getting my period and my fertility back.

  1. I started eating a lot more. I stopped measuring my food and counting calories and macros, etc. I started out slow with this process because I didn’t want to feel uncomfortable all the time and I wanted to allow my body some time to adapt. I started adding a few extra hundred calories here and there, (mostly in the form of nut butters and healthy fats) until I reached about 2500-3000 calories/day.
  2. I started eating A LOT more fats. This was the easiest way to add more calories while still feeling healthy. And understanding that hormones are made from fats, it made sense to add more of them.
  3. I had to get over my fear of food and carbs. I had to know that my body needed this food as fuel and that it was going to help me be healthy. I had to unlearn that some foods are good and some are bad. I had to learn that I could consume things besides “superfoods” and still be healthy. I had to stop labelling foods and listen to my body. I had to indulge in cravings because it’s what my body needed. This is still a work in progress but I am getting better everyday.
  4. I had to get over the fear of gaining weight. I knew it had to be done in order for me to be healthy. I didn’t know how much weight I was going to have to gain in order to get my period back, but I had to trust the process. I had to trust that my body would tell me when I was hungry and when I was full and that eventually my weight would even itself out. (Spoiler alert: it did!!) A great way to start is to throw out your scale and never step on one again!
  5. I left my jobs and moved out of Toronto. I think this had more of an impact than I realized at the time. But the stress of living in the city and driving to my jobs had placed a lot of stress on my body.
  6. I had to stop exercising all-together (except for some light walking and Pilates on Demand). I thought this was going to be the easiest, but turns out it was the hardest thing for me to let go of and the last thing I let go of. It was once I stopped exercising that I was able to really start noticing a significant change in my body and ultimately my fertility. I couldn’t quit cold-turkey. It took me about a year before I stopped everything but light walks. But that was the missing piece. My body couldn’t handle the stress of exercise after years and years of using it as a way to manipulate my size and shape, my body just had enough.

Pilates on demand

A few other things I did was start on Synthroid, as I had subclinical hypothyroidism. This was unique to me, so I would make sure you get tested before self-diagnosing, as the symptoms are incredibly similar and overlap with HA. I also saw a naturopath for a year and did acupuncture weekly, took countless supplements and drank a lot of nasty teas. I can’t say for sure if these had any impact on my fertility or not… I don’t think they were necessary. I think I used them as a way to try and bypass having to gain weight. But in the end I just ended up spending a lot of money when I could have committed to the items above a lot sooner.

What it’s really like to gain weight

How I recovered from Hypothalamic Amenorrhea

It sucks. None of this was easy for me. I ended up gaining between 20-25lbs in order to get my period back and like I said earlier and like so many people in the fitness and health industry, we pride ourselves on looking a certain way. When I had to throw that all away, I felt like I lost myself. I didn’t know who I was or what I was doing.

All I knew is WHY I had to do this. And I had to trust my body.

I think I went so many years not trusting my body that I forgot how smart it was. It is sooooo much smarter than me.

Because gaining weight can be more of an emotional and psychological challenge than it can be a physical one, I did a lot of things to help my mental health during this process:

  • I read the book No Period? Now What? by Nicola Rinaldi. This thing was my bible and I couldn’t have been successful without it.
  • I joined HA support groups on Facebook
  • I bought new clothes that actually fit and gave away all my old clothes. This was actually very cathartic for me.
  • I focused my time and energy on growing my Pilates business and my blog and sharing my story with you.
  • I followed influencers on social media who had positive body image posts
  • I unfollowed fitness model-type influencers on social media who reminded me of my old, unhealthy ways.
  • I used all my new free time to reconnect with Mike, friends and spend more quality time with Allen

How I recovered from Hypothalamic Amenorrhea

What it’s really like to be recovered from HA

Two words: I’m FREE!!!

  • I’m free of labels
  • I’m free of having to fit my body into a certain stereotype
  • I have food freedom
  • I have exercise freedom
  • I have time freedom
  • I’m free of body shame and judgement
  • I have a sex drive again!

I’ve honestly never been happier in this body. To finally be free in your own body after years of control and restriction and schedules and routines is beyond words. I love the spontaneity of life now and I LOVE FOOD again! I still love to exercise but my day no longer revolves around it.

And the best part is having the ability to grow this little miracle baby in my belly.

It needed a little help from some fertility medication, but I know it wouldn’t be possible if I didn’t recover from HA first.

How I recovered from Hypothalamic Amenorrhea

I will be honest and tell you that watching my body grow so rapidly since I’ve gotten pregnant has not been easy either. Now don’t get me wrong, I am overjoyed that my body is able to grow a tiny human inside of it, I just didn’t expect the emotional toll it would have on me. But that’s a whole other post for another time!

What I want you to take away from this is…

If you are just starting your HA journey or you have been healing for a while now, just know that you are not alone. There are millions of women suffering out there, and together we can all help each other get through it. Don’t be afraid to ask for help.

Being underweight is not healthy. Over-exercising and under-eating is not healthy. Overeating and not exercising is not healthy either.

Listening to your body and not worrying about what size or shape you are, is healthy.

You are not defined by a number on a scale or your dress size. Being smaller does not make you a better person or a more successful person. You are so much more than any number and there is so much more to life than looking “thin” or “fit.”

I hope this post has taught you a little more about HA and that if you are suffering with it, just know that you need to let go of this “ideal body” image you have in your head in order to get healthy. Because the truth is, only YOUR body knows what’s healthy for you, not Instagram, not your mom and not that super critical head of yours. You have to trust that your body knows best. Just remember this:

Recovery begins and ends with trust.

How I recovered from Hypothalamic Amenorrhea





Ps. If you would like to try a gentler form of exercise, please check out my website: www.pilatesondemand.ca <3

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  • Rachel Gordon
    August 24, 2018 at 4:19 pm

    This is great. Thanks!
    I think I may do a blog at some point just to show that women who were of average weight have it happen to them too (even though I know you mention it above). I see it mentioned but there are never any pictures of those women. Maybe someday after I get pregnant, I’ll be able to tell my story.

    • JessD
      August 24, 2018 at 4:25 pm

      Hey Rachel,

      Thank you so much for your reply. I agree! There are so many women of average weight who still suffer from HA. Technically my BMI was never underweight, yet I still didn’t get my period. Even after I had gained 15-20lbs, it still took me eliminating exercise all together in order to completely recover. I know one day you will get your miracle baby. And I cannot wait to read your blog post when that day comes. xoxo

  • Allison
    August 25, 2018 at 8:02 am

    This is seriously an amazing story and really spoke to me! I love your blog and Instagram. You can see how passionate you are and how you love food and don’t fear it. I’ve struggled with similar food and exercise obsessions and have been so much healthier since having my daughter 3 years ago. It’s important to me that she grows up with a healthy relationship with food and a healthy body image! Thanks for sharing!

    • JessD
      August 25, 2018 at 2:30 pm

      Thank you so much Allison. I have heard that having a baby can really change your perspective on health and I too want to do my best to raise my kids with healthy body images. Thanks for sharing and your kind words! xoxo