My Story of Hypothalamic Amenorrhea: Finding Life in a Missing Period

I self-diagnosed myself with hypothalamic amenorrhea 6 years ago, and lacked a menstrual period for the better part of a decade. I was doctor-diagnosed with hypothalamic amenorrhea late last year. 

For the most part, over those 6 years, I ignored my missing period. The side effect wasn't bad after all -- no period!

Yet, as I got older, little niggling signs began to show something was amiss -- my joints ached, I craved salt like no one's business, I had post-menopausal female hormone levels, and well, maybe one day I would want to have kids and I would need to ovulate for that to happen.

And it all started with the freaking pill. 


Birth Control

I had an on-again off-again relationship with birth control. Just like any bad boyfriend, I can’t recall the number of times I’d broken up, then got back together with the little white pill.

It stole my heart at 17, and went something like this for the next decade:

  • 2004-2007 On Birth Control {because college + babies didn't seem like I good idea for me}
  • 2008-2010 Off Birth Control {I didn't have a period over these 2 years}
  • 2010-2011 On Birth Control {because the doctors didn't know why I wasn't having a period, but concluded going back birth control would at least create some semblance of menstruation}
  • 2012-2014 Off Birth Control {I had 1 or 2 periods per year}
  • 2015 On Birth Control {because I was diagnosed with osteopenia and hypothalamic amenorrhea, and my doctor thought it was important for my bone health -- and I agreed}
  • 2016 Off Birth Control {because I needed to get to the root of of things}


During all the off-birth control & no-period phases, I was super jazzed to not have a period.

Outside the obvious benefit of not needing to deal with a monthly visitor, I was:

  1. Saving money on birth control and tampons
  2. Not having PMS crazy-eyes
  3. Not having weird acne/headaches/cramping



But, all the super jazzed feelings came to a halt in 2015, when I was officially diagnosed with hypothalamic amenorrhea (HA).

In ordinary terms, HA is a result of the body sensing so much stress (mental stress or physical stress) that it produces cortisol (a fight-or-flight stress hormone) in lieu of sex hormones.

No sex hormones = no period

Imagine there's a lion chasing you every day.  Your body is rightfully stressed at the threat of a lion attack, and produces cortisol so you can run from said lion. 

Who has time to produce a baby when you’re running from a lion?

And that’s what I was doing: Running from a lion. Every. Day.


When it rains, it pours

I thought I was doing everything right. And by most definitions, I was a well-functioning adult.

I ate healthy, I had a demanding career in a big-girl job and I was checking off all my Type-A check boxes. 

Yet, in 2015, those little niggling signs turned into huge red flags:

  • My joints started to ache (later to be diagnosed as osteopenia)
  • I ATE salt -- I went through one salt grinder worth of salt every 1-2 weeks (sign of adrenal dysfunction)
  • I often felt light-headed, like I was going to pass out. My skin turned really dry and I had low blood pressure (signs of adrenal dysfunction)
  • My adrenal test came back at twice the normal range (adrenal overload)
  • My hormone levels were that of a post-menopausal woman (hypothalamic amenorrhea)

My day-to-day life was similar to that of so many other women -- I was exercising, working a stressful job, being Type-A (like literally organizing other people's email inboxes) -- but, why was I the only one dealing with this condition?


No two birds are alike

So, here’s the thing that makes me stomp my feet like a 3-year-old. 

You can have two women who eat the same thing, exercise the same amount, stress about the same things. One will lose her period. The other won’t.

I see women everyday who lead far more stressful lives than I do, exercise far harder and longer than I do, eat the same amount as I do – and they maintain their cycle.

Hmpphh.. I’m trying my hardest not to say, “but it’s not faiiiirrrr". 


No Bones About It

So while I was wallowing in the diagnosis of hypothalamic amenorrhea, I found myself in another precarious situation.

In nutrition school, I learned that a woman needs estrogen for bone development. 

My hormone panels from 2009-2014 showed that my estrogen levels were that of a post-menopausal woman – very low.

But, doctors kept saying, “let’s just wait it out”. 

Over the 6 years, I knew I had HA -- thank you Dr. Google. But, I was too stubborn to change. 

Finally, in 2015 I requested a DEXA scan. Turns out – I had osteopenia at the ripe age of 27.


Back On it

After a small freak out by my ob-gyn and primary care doctor, they told me to get back on a hormone replacement because I need estrogen for bone development. 

And since our rate for absorbing calcium into bones begins to decline after age 30, they didn’t want to wait around.


Masking the symptom

My doctors insisted I go back on the birth control pill. But, I didn’t want to go back on the pill. Stubborn, much?

I had 2 options to increase my estrogen:

1. Go back on a prescription of estradiol for (possibly) ever. 


2. Stop doing all the things (working out, eating “healthy”, stressing) and let my body regulate sex hormones again.



Denial, then acceptance

I chose Option #1. 

The 6 months after the diagnosis of hypothalamic amenorrhea and osteopenia, I went back on the birth control pill.

Each month I walked into Target to fill the prescription, I knew I wasn't doing the right thing.

But, I didn't want to change. 

I didn't want to change my life. I didn't want to change my habits. I wanted to do all the things that I had done forever because I hated the idea of change. I hated the idea of giving up control. I hated the idea of giving up the things that made me me. 

And then, almost overnight, I chose Option #2.  

I can't pinpoint what shifted exactly, but I changed.

I stopped taking birth control, stopped working out, started eating a ton and started not caring so much. 

After I went "all in", I felt like an adult. I felt brave. I felt calm. I felt at ease. 


The Root cause

For me (and after reading endless forum posts and online resources), I think my hypothalamic amenorrhea is brought on by a combination of two things:

1) I'm HIGHLY SENSITIVE + highly strung

I have very sensitive skin. When I got my first facial a few years ago, my face turned so red the facialist (who was 20 years in the biz) said she had never seen someone be so sensitive to her most mild products.

I have very sensitive digestion. 

I have sensitive emotions. I’m super sensitive to criticism, failure and unmet expectations.

With all these sensitivities, why would I think that my body is NOT sensitive to stress?  


2) Lifestyle factors

I did (apparently) stressful things: over-exercising, over-healthy eating and over-stressing.

But if I didn't do the exercising, healthy eating and stressing, then my highly-sensitive/highly-strung personality thought I was failing. 

Let the vicious cycle begin. 


Take a chill pill, won’t you?

The only real solution for my lifestyle-induced condition is to change my lifestyle.

So, to let my body know that I’m not running from a lion, here’s how I've changed my lifestyle:

  • Eating 2,500-2,800 calories per day with the goal of gaining 10-15 pounds
  • Eating 200+ grams of carbohydrate
  • Not working out
  • Sleeping a lot (but, I’ve always been an 8+ hour sleeper)
  • Walking 30 minutes per day
  • Working with a therapist
  • Being super chill, dude


Hormone Disruptors

In addition to these lifestyle changes, I've also taken a closer look at common household and body care products that are increasingly linked to hormone dysregulation and disruption. 

Below are posts describing how I'm changing our home and products. 

Finding support

While I hesitate to write and post this before I'm out of the woods, I know there are women struggling with hypothalamic amenorrhea and may feel isolated, like I did.

I found a few trusted friends who were dealing with this condition and it made a world of difference in my life. If you're dealing with this condition, feel free to reach out to me or if you prefer to stay anonymous, you can find support on forums like this one, Facebook Groups like this one and this one and by reading this book



(October 4th, 2017)

I've been meaning to write an update to this post.

I get a trickle of emails from ladies asking for updates on my HA journey, and I'm also a member of a few HA FB groups, so I get asked quite a bit about my recovery and I'm happy to share that I became pregnant roughly 6 weeks after going "all in" -- eating a ton of food, not working out, trying not to stress about things.

I did not get a period before becoming pregnant, which is not always the norm. 

I increased my BMI from 19.5 to 21.5 and gained about 13 pounds in 6 weeks. 

The biggest thing in my recovery was eating 2,500-3,000 calories per day and not working out. It was tough, and I thought I was going to balloon up, but my weight stabilized at 138 pounds (I was 125 pounds), then I got pregnant. It's crazy how fast it happened. 

I often get asked what I ate, so here was a sample day: breakfast was oatmeal, eggs and a sausage; lunch was leftovers; snacks were full-fat yogurt, nut butter and full-fat cheese; dinner was meat, sweet potatoes and veggies all covered in butter. Basically lots of carbs and fat! And no exercise. 

I don't necessarily eat this amount of food now, but that's what I ate to get pregnant. I started working out after my morning sickness passed (week 9), but I never break a sweat or breathe hard. :)

I hope my story brings hope to someone suffering with infertility or HA. It will happen, it takes patience and lots of full-fat yogurt. :)