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Writer's pictureLucy

My Story: Getting (Wrongly) Diagnosed with PCOS

Updated: Mar 21, 2021

Disclaimer: I'm not a doctor. What I share here are my own experiences and insights from reading, research, or conversations with doctors about my own PCOS diagnosis and recovery. Please consult your doctor for specific diagnoses or medical questions.


After quitting hormonal birth control (HBC), I lost 50 pounds. It didn't happen overnight, nor can I say with any confidence that it happened directly because I ditched the pill. I can say, however, that the year in which I was re-establishing my hormone-free body was the most transformative in my life.


Beyond shedding weight, I felt a huge sense of mental clarity return to me. I excelled at work, found exercise, got promoted, applied and was accepted into grad school, moved in with my partner and adopted a cat. It was rad, to say the least.



Still, 50 pounds is a lot to lose. And, as most of my friends and family will tell you, I didn't look fifty pounds overweight when I started my weight loss "journey." By natural extension, I got pretty skinny. Without adding harmful #dietculture details, I'll just say I was skinny enough that virtually every aspect of my life looked and felt different, from my pants to my period – which, incidentally and mysteriously disappeared in January, 2018.


At first, my period's absence didn't seem that strange. I'd come off of birth control seven months prior, after all, and my periods had been sparse and strange during that duration. My doctors had told me to expect irregular cycles after ditching HBC; as long as I cycled naturally every three months or so, I wasn't at risk of developing health issues*. I tracked my cycle during this time using an app, and after 5 months with no bleed, I returned to the doctor.


I was given various blood tests and an internal ultrasound. My bloodwork came back normal, with no hormonal imbalances, but my ultrasound showed some tiny circular bumps - cysts - on my ovaries. The cysts, in combination with the absent period led to a diagnosis of polycystic ovarian syndrome (PCOS)*. Technically, I had two of the three "must-haves" for a clinical PCOS diagnosis:

  • No period ✓

  • Cysts on my ovaries ✓, and

  • Higher than normal androgen (male hormone) levels ✗

The diagnosis was curious to both me and my doctor, however, because a hormonal imbalance is truly at the heart of most PCOS cases - it's not just some side effect that some people experience and others don't.

Among PCOS patients, increased levels of androgen hormones leads to the development of multiple ovarian cysts and lack of follicle maturation and ovulation.


Additionally, 50% of PCOS patients are obese or overweight, and many struggle with growing too much hair. I, on the other hand, was (newly) skinny, my hair was falling out, and my androgen levels looked fine.


[Spoiler alert] This diagnosis was not just incorrect for me, it was diametrically opposed to what I was actually dealing with: hypothalamic amenorrhea.


A PCOS diagnosis can be treated with modified diet and exercise. Doctors recommend that PCOS patients exercise more and restrict their eating, focusing on certain healthy fats and fibers. I took this guidance as a helpful nudge to continue on my own diet and exercise journey - I ate sweet potatoes and pumpkin seeds galoree, and religiously attended hot yoga classes.


While I followed my doctors' guidance, I was actually making my true condition – hypothalamic amenorrhea – worse.





*Resources:

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