Why is it so difficult to diagnose PCOS?

“PCOS isn’t just about the cysts on the ovaries, it is about the metabolic syndrome that goes along with it.”

Imagine being diagnosed with a medical condition, then being told it went away only to be rediagnosed years later with that same medical condition. At 14, as I was preparing to go on my first round of Roaccutane for my severe acne, an ultrasound found cysts on my ovaries. I was diagnosed with polycystic ovarian syndrome (or PCOS, as it’s more widely known).

For years I lived thinking I had PCOS but, at 21, I was told my original diagnosis was incorrect. I’d gone to the doctor to investigate some issues I was having with my menstrual cycle, and they suggested I get an ultrasound to help identify the cause. Once the ultrasound results came in, I was told I no longer had PCOS because the cysts on my ovaries had gone away.

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I’m now 26 and only a few weeks ago, I went to the doctor for a different issue. There, I explained what I was going through and the doctor started asking me about my medical history. As I’ve never had a regular doctor (I move house a lot!), I thought I was fully prepared. I’d been through this line of questioning before. What I wasn’t prepared for though, was a second PCOS diagnosis.

I’d now officially been diagnosed with the same medical condition twice. I was very confused and had a lot of questions. How could I have had PCOS this whole time without cysts on my ovaries? Why had I been undiagnosed all those years ago? Why had no other doctors throughout my life asked me about whether I think I might still have PCOS? I’d had this condition for years and had no idea.

Unfortunately, this is extremely common in the world of PCOS. PCOS affects 8 to 13 per cent of reproductive age women. It’s a gynaecological endocrine disorder that’s very closely associated with insulin resistance and hyperandrogenism (think severe acne and excess body hair), as well as metabolic conditions including gestational diabetes and type 2 diabetes.

PCOS can also increase someone’s chances of developing a cardiovascular disease, and enhances feelings of anxiety and depression. Around 70 per cent of women with PCOS live undiagnosed, which is astounding considering the more severe conditions it can lead to.

I’ve heard many stories of ovary owners struggling to understand why their body works the way it does, which made me wonder why the world of PCOS is so confusing. How many other people shared my experience of re-diagnosis?

To learn more about the diagnosis of PCOS, I reached out to women’s health specialist and biomedical naturopath, Megan Haralampou, to answer my long list of questions. Megan is an “overqualified naturopath” because she’s well versed in not only natural medicine, but also clinical medicine. Essentially, she’s a doctor, naturopath and biologist all rolled into one.

She explained that currently, when it comes to diagnosing PCOS, most medical professionals will start with the Rotterdam Criteria. “The Rotterdam Criteria is becoming a much more widely accepted form of diagnosing PCOS. Especially in the last couple of years… what we’re seeing is women who were diagnosed maybe five or ten years ago, in their teens, then undiagnosed [are being] re-diagnosed again using that Rotterdam [Criteria].”

What’s the deal with the Rotterdam Criteria?

The Rotterdam Criteria was developed in 2003 and states a person must present with two of the three overarching symptoms to be fully diagnosed with PCOS. These symptoms include anovulation (irregular or missed periods), hyperandrogenism and cysts presenting on the ovaries, following an ultrasound.

The criteria seems straight forward, but Megan says the reason the criteria was created in the first place, is because there are multiple ways PCOS can manifest in the body. “Not every single person that has PCOS will have cysts on the ovaries, but then you can also still have the high androgens, testosterone and then you can also have the irregular periods.

“That’s really what PCOS is, it’s actually less to do about cysts. It has more to do with the actual metabolic symptoms that go along with it, whether that’d be high cortisol, insulin resistance, inflammation… that’s usually how PCOS is manifesting.”

When the Rotterdam Criteria was developed, four different types of PCOS were also outlined. As the condition can vary from person to person, Megan says the four types of PCOS have helped medical professionals decipher other ways PCOS can be diagnosed. “The Rotterdam have done their own, what they call, phenotypes. Type A, B, C and D.

“Type A is the classic, with irregular periods, or delayed ovulation, whether that’d be cycles greater than 35 days, the high testosterone, the high androgen signs, and also polycystic ovaries. Then your Type B is the delayed ovulation, they also have high androgens, and then high testosterone, but they have normal ovaries on ultrasound. Type C is high androgens, they do have cysts on the ovaries, but they have completely normal ovulatory cycles. They have less than 35 day cycles ranging between 25 and 35 days.”

According to Megan, Type D is the most ambiguous phenotype. “That one has the delayed ovulation, it does have the cysts on the ovaries, but they don’t have any high testosterone signs. So, they don’t have acne, they don’t have the back hair and those sorts of things.”

As well as the four phenotypes, Megan says the Rotterdam Criteria also outlines four metabolic types of PCOS. These add an extra layer of symptoms to consider when PCOS is being diagnosed. “You can have post-pill PCOS, which is PCOS that presents after you’ve come off the pill. You’ve got inflammatory PCOS, insulin resistant PCOS and then adrenal-driven PCOS.

“The most common – 80 per cent of people who have PCOS will have insulin resistant PCOS. Even if you don’t have overt signs of insulin resistance, certainly most women with PCOS will have some degree of issue with handling insulin.”

The Rotterdam Criteria really dives into the specific elements of PCOS and how it can manifest. With all this research and evidence, it’s difficult to understand why so many ovary owners are still struggling to get a proper PCOS diagnosis. Surely, once you’ve found the phenotype and the metabolic type, you’re good to go?

When I ask Megan this question, she explains that the Rotterdam Criteria and its list of types are still extremely new in the medical world. “With any research, it takes about 17 years for things to be more accepted within mainstream medicine. The Rotterdam Criteria [was put] together in 2003. So, it really goes along that timeline that now, 15 years later, things have been a lot more widely accepted.

“It is only coming to the forefront of everyone’s minds in the last 20 years that this is a gynaecological condition. Prior to [that], women would’ve been misdiagnosed tenfold over because it was literally just if you had cysts on the ovaries, you had PCOS and that was that. There’s a lot of women who might’ve been diagnosed ten years ago and still don’t have a lot of clarity.”

As a late millennial, this timeline seems to run alongside my own diagnosis. When the Rotterdam Criteria was developed, I was nine years old. I was diagnosed with PCOS the first time only five years later. Back then, the Rotterdam had only just been introduced into the medical community. There’s a good chance my doctor at the time didn’t even know about it!

Today, if someone believes they may have two of the three overarching symptoms of the Rotterdam Criteria, Megan suggests being referred to a specialist to get a diagnosis. “A specialist would be the best point of call because they probably would have a lot more knowledge in that area.”

Over time, it’s becoming clearer that PCOS is a complex condition. There are so many symptoms that may not always manifest in ovary owners and, although there’s now a more standard diagnostic criteria, there’s still so much more to learn.

As Megan says, despite its name, there’s so much more to PCOS than we first thought. “PCOS isn’t just about the cysts on the ovaries, it is about the metabolic syndrome that goes along with it. You can just have polycystic ovaries, but not have the syndrome that is associated with polycystic ovarian syndrome.”

For more on PCOS, try this.