I Was Misdiagnosed With PCOS

It was my doctor’s nurse on the other end, who just weeks earlier had taken vials of my blood and sent it off for a routine lab panel. 

“You don’t have PCOS,” she said almost casually. I stepped away from my coworkers and asked her to please repeat herself. She said my lab tests had been run against the hormone markers for PCOS and had all come back picture perfect. It seemed that as far as my hormones were concerned, they could win the Indy 500 or the Palme d’Or at Cannes if they wanted to.

When I recovered, I texted my mom and sister immediately. They’ve both been by my side over the past six years since my initial (incorrect) diagnosis. They were happy and relieved for me, and urged me to be, too. But all I could feel was angry, and more than that, so confused. It felt like the last six years of my life, in which I based every emotional, physical, and mental decision on my supposed hormonal disorder, had been a lie.

Now I Have More Questions Than Answers 

I’ve written extensively (and I do mean extensively) about my journey with this condition. As a writer, I’ve always been fond of over-sharing as a way to manifest my own misgivings and fears. I’ve bonded with other women over what I thought was our diagnosis. I recently started looking into personal trainers, because I had found that the general consensus among experts and patients was that resistance training, combined with a low carb diet, which I had also committed to, was an effective treatment plan.

Maybe for another woman, that phone call would have sealed everything up in a big red bow, case closed. But even after being referred to other physicians (including an endocrinologist to find out what might really be going on), I see question marks everywhere instead of answers.

Such as, what did I do it all for?

If I don’t have PCOS, why was I on the pill for five years? Why did I switch medical professionals and see seven gynecologists in a three-year period? The depression, the crushing pressure, the two-year blur in college of weight fluctuation, a toxic romantic relationship, and the passive suicidal ideation...what was it all for?

Even without PCOS, is there something else at stake here? 

But as much as I want to ruminate on the past (I am a chronic overthinker, after all), I’m much more concerned about the future. Even without PCOS, is there something else at stake here? Will my fiancé and I have a chance to start the family we’ve been dreaming of?

Like I said, questions. And I have yet to find the answers to any of these. 

The Misdiagnosis “Epidemic”?

There is some comfort, however. As it was with PCOS, I knew I wasn’t alone. And even in misdiagnosis, I’m certainly not alone. 

12 million people per year are affected by misdiagnoses. What’s more, women are 20-30% more likely to be misdiagnosed by medical professionals. Journalist Meghan Rabbitt calls it an “epidemic” and through her research of the six most commonly misdiagnosed conditions, PCOS is #3 on the list. It’s estimated that PCOS affects approximately 5-10% of women who are of childbearing or fertile age, and that 1 in 10 women will be diagnosed in their lifetime. That’s usually where the research ends. But what should be examined is how many women have discovered they’ve been misdiagnosed after the fact.

Call it what you will — sexism in the medical profession, etc. I call it human error and nothing more. But it seems that even in this day and age, doctors still view reproductive health as a “medical mystery” and, more often than not, don’t even trust women to know their own bodies. 

12 million people per year are affected by misdiagnoses. 

The thing is, PCOS should never be diagnosed without a hormone panel, and without observing obvious evidence of androgens in the patient in question. These include heightened testosterone and androgen markers like chronic acne and hirsutism, or excessive hair growth on the body.

When I look back on the 17 year old girl who had just one ultrasound and had never had a period, it almost seems obvious to me now. Like many other women I know, I never really fit the stereotypical mold of what a woman with PCOS looks like. And more damning than that, I was diagnosed without any blood test or hormone lab panel.

So, What’s Next?

I ask myself this question at least 50 times a day. Right now, I don’t know, but unlike my initial diagnosis, I’m in no mood to rush things. 

There’s so much information out there it’s almost overwhelming. The plethora of opinions, studies, research, and personal stories was enough to make me feel completely hopeless the first time around. Now I’m hoping that being increasingly selective in what I choose to consume will be the winning tactic.

I also can’t stress enough the importance of having not just a doctor, but the right doctor. One who listens, understands, and takes their own time to find the answers you want, and isn’t too concerned with handing out just any diagnosis. A support system is equally important. Whether it’s your family or even an online community of people who know firsthand what you’re going through, it’s crucial to have the right ones in your corner.

Any decision made for your body with the support of all the information at hand can never be a bad one.

Now that I — for all intents and purposes — don’t have PCOS, I feel almost immune to the noise. The pharmaceutical industry, the media’s own agenda, even the agenda of my own doctors I saw in the past and my closest friends’ personal choices. What matters now, now that I have the freedom and the voice to stand up for myself alongside the perspective the past six years have given me, is what I want for my body. Any decision made for your body and your reproductive future with the support of all the information at hand can never be a bad one. That, and I now have the combined years of experience to distinguish what’s good for me and what isn’t. With that confidence, this new development seems less daunting. 

Closing Thoughts

I really can’t stress it enough. We don’t know our own bodies, and that’s the way we’ve been trained to be. We don’t know our own bodies so much that we have to be told what we have, what we don’t have, what we should take to treat it, no matter the cost. We’ll take anything and put up with anything just to supposedly feel better.

Had I trusted my own body in the first place and actually listened to it, I might have arrived at this new attitude much sooner. I’m not going to say that it could’ve prevented my misdiagnosis. I now think that was unavoidable. But most of the time, it isn’t about the destination but the journey. If anything, I’ve only been reminded that the journey is ongoing.