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Misdiagnosis of PCOS: Why This is a Common Occurrence?

December 17, 2020. 8 mins read

All of us women have a love-hate relationship with our period. Our monthly cycle is like Tom’s and Jerry’s friendly rivalry; we can’t live with our period, nor without it. But just like how Tom would miss Jerry when they wouldn’t be together, we do miss our monthly guest when it comes late (or never arrives for months at a stretch).  The lateness of the period invariably calls for caution and an impromptu visit to the Ob-gyn. We can bet that after an ultrasound and a few period-sex related questions, your gynecologist is likely to announce that you have Polycystic ovarian syndrome (PCOS) and give you some random statistics on how this is common among women of reproductive age. But you must know better; never trust just one diagnosis, but don’t tell your ob-gyn that we said this.

What is ‘Misdiagnosis of PCOS’?

Simply, it means that you have been diagnosed with PCOS when you don’t have the disorder. Imagine that you’re in a horror movie, and the police have caught the killer. Now, there’s no threat to your life. But what if the police have caught the wrong person, and the real criminal is still out there waiting for you? This is exactly how PCOS misdiagnosis would turn out for you in real life. It’s no longer a movie.

But My Ob-gyn ‘knows

And we don’t doubt you at all! But misdiagnosis of PCOS has less to do with the smartness of the doctors and more to do with its name. You see, the people who named the disorder made a grave error; PCOS is a misnomer. The word ‘cyst’ in PCOS gives out a negative connotation. Women often think that their ovaries are filled with huge, pus-filled cysts and start worrying. But the truth is hidden somewhere else. Well, it’s still inside your ovaries, but has nothing to do with cysts. Let us explain. The word cyst in ‘PCOS’ refers to the many follicles that are present in a woman’s ovaries. While they sound horrified, they’re actually normal, fluid-filled follicles structures in ovaries, containing eggs. Now, the normal count of follicles in the ovaries is around 10 to 15; it is when you have more than 20 or 30 follicles in your ovaries, are you considered to be suffering from PCOS. Hence, PCOS is just poly-follicle syndrome or poly-egg syndrome, where you have so many eggs that your ovaries get confused about which egg to release every menstrual cycle, leading to irregular periods. Now, this is where it gets tricky. While poly follicles could be a reason for your PCOS, they’re still not the only diagnosis. If an ultrasound tells you that you have PCOS, do not ever believe it.

How Can the Ultrasound be Wrong?

Because it’s just a machine! And more likely, it’s not the ultrasound that is wrong, but your ob-gyn who read the reports upside down, or wrong, or with their eyes closed; you pick one.  The presence of cysts on the ovaries is quite common among women; you can have cysts without having PCOS. Only when you have multiple cysts on each ovary is it termed as ‘poly cyst.’ Ultrasound detects all these cysts on the ovaries, and the doctor concludes by saying that you have PCOS, which leads to misdiagnosis. We know, that was quite a quick overview. Here’s a simple one for better understanding.  A cyst represents a ‘half-baked’ egg that is not yet prepared to start its journey into the world. While a normal menstrual cycle releases the necessary hormones along with the egg and triggers the ovulation, cysts would play with the hormonal balance and keep your egg ‘stuck’ to the ovaries. They’re just not yet ready to leave their ‘comfort zone.’

You Mean, I’ve Been Misdiagnosed? (Cue: internal screaming)

It’s simple; you don’t have to have cysts to suffer from PCOS, and having cysts does not mean you have PCOS. There are several factors that determine the true nature of PCOS and conclude the diagnosis as accurate, which are not at all related to having cysts on ovaries. As per the experts of the Androgen Excess Society, an accurate PCOS diagnosis needs to fill the below criteria:
  • Hyperandrogenism: If you have higher than the average amount of androgens in your body, including testosterone
  • Ovarian dysfunction: If your ovaries have multiple cysts, or they just fail to ovulate regularly, resulting in the irregular menstrual cycle
  • Other related disorders: such as thyroid
Hence, if your doctor has declared that you suffer from PCOS solely based on ultrasound results, you need to speak up and demand more tests. Ask for additional medical tests, such as an androgen hormone test that includes examining the testosterone, DHEAS, and androstenedione (your doctor will know what these terms mean) as well as an insulin resistance test. 

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