Were you told you have polycystic ovary syndrome or PCOS based on a pelvic ultrasound? That may or may not be an accurate diagnosis because PCOS cannot actually be diagnosed or ruled out with ultrasound.

Welcome back to the podcast. I’m your host Lara Briden, a naturopathic doctor and author of the books Period Repair Manual and Hormone Repair Manual.

And I’m recording today in my little home office in Christchurch, New Zealand. I normally see patients in my consulting room which is a 10-minute bus ride from here but I’ve lately switched to telehealth consults, just until we’re through this omicron wave. 

Let’s start with: what is PCOS? Just in case you’re new to the diagnosis. The most precise way to define the condition is that it is the state of having androgen excess, or too much testosterone or other male hormone, when all other causes of androgen excess have been ruled out. In other words, PCOS is a whole-body hormonal condition. And the high male hormones can either be detected on a blood test or observed as the clinical symptoms of strong jawline acne or facial hair or hair loss, even if the blood test is normal.

Zooming out for a minute, there are several other possible explanations for androgen excess or high male hormones. Examples include high prolactin and a genetic condition called adrenal hyperplasia. So, your doctor is supposed to rule out those conditions before making the diagnosis of PCOS. 

The fact that PCOS is defined as a symptom, ie. androgen excess when all other causes of that symptom have been ruled out, makes PCOS an umbrella term—which just means a label applied to any individual with the symptom, in this case, androgen excess. 

Another umbrella term, for example, is the diagnosis irritable bowel syndrome or IBS,
which is a broad term used to describe digestive symptoms caused by various underlying biological mechanisms including dysbiosis, low stomach acid, or SIBO— also called small intestinal bacteria overgrowth; all of which require different treatments. 

Likewise, the term PCOS is a broad term used to describe androgen excess caused by different underlying biological mechanisms; all of which require different treatments. 

Which is why it’s important to think about the different types of PCOS, including insulin-resistant PCOS, post-pill PCOS, and adrenal PCOS. For more information about that, see my 4 types of PCOS blog post, which I’ll link to in the show notes.

For now, let’s get back to the question of why there is almost no connection between PCOS, the hormonal condition and the ultrasound finding of so-called polycystic ovaries. Starting with the fact that polycystic ovaries are not the same as ovarian cysts. 

Which is confusing, I know. The thing to understand is that a normal ovary is packed with fluid-filled sacs, which are technically cysts but are, of course, the normal eggs or follicles. Ovarian follicles can, at times, grow to be abnormally large and can cause pain and sometimes require surgery. And those are functional ovarian cysts. And there are other kinds of large ovarian cysts but we won’t get into all of that today. The so-called “cysts” of a polycystic ovary are not abnormally large like functional cysts or other kinds of ovarian cysts. Instead, they’re abnormally small. They’re small undeveloped follicles or eggs which is really just an indication that ovulation is not occurring or did not occur in that particular menstrual cycle. 

Small follicles say nothing about hormones or androgens. And say nothing about whether ovulation will occur in the future. And this is the important part. The number and size of the follicles in the ovaries changes all the time.  And therefore, the appearance of the ovaries on ultrasound changes dramatically over just a few months. 

Basically, as soon as ovulation does occur, there will be fewer follicles and the ovaries will once again appear normal and ovulatory on an ultrasound study. Lots of women occasionally have anovulatory cycles or cycles when they did not ovulate. So, lots of women occasionally have a highish number of ovarian follicles visible on ultrasound, especially young women who have more follicles than older women.

And especially with modern ultrasound equipment which has a higher magnification and therefore sees more follicles. That’s why it’s common for women with normal hormones 
and no symptoms of androgen excess to have polycystic ovaries on ultrasound. In fact, one study found that women with normal hormones have so-called polycystic ovaries at least 30% of the time. But then the appearance goes back to normal as soon as they have an ovulatory cycle.

It’s also possible to have polycystic ovaries but have an entirely different thing going on 
such as endometriosis or undereating, which we’ll discuss shortly. 

The unreliability of the polycystic ovary finding is why many experts now agree that “the presence of polycystic ovaries has no implications with regard to the endocrine or metabolic features of PCOS.”  And I’ll provide the citation for that quote in the show notes. In fact, the earliest diagnostic criteria for PCOS said nothing about polycystic ovaries. That was the criteria from the National Institutes of Health which stated that PCOS should be diagnosed based on the symptoms of androgen excess, infrequent ovulation, and the ruling out of other explanations for androgen excess. 

It was only later, with the controversial Rotterdam Criteria that the ultrasound finding of polycystic ovaries was included as an approximate indicator of anovulation or infrequent ovulation. And not only was the ultrasound finding included in the Rotterdam criteria, which was probably a mistake, but it became one of only “2 out of 3” criteria required for the diagnosis of PCOS. The other two criteria being androgen excess and irregular periods. And that, unfortunately, opened the door to women being told they have PCOS based only on irregular periods and polycystic ovaries but not androgen excess! Which makes no sense given the condition is, by definition, the symptom of androgen excess. 

This confusing situation has led to concern that some women are being harmed by an unnecessary PCOS diagnosis and unnecessary fears about their health and fertility. For example, in a British Medical Journal article called “Driven by good intentions: why widening the diagnostic criteria for polycystic ovary syndrome may be harming women,” Sydney researcher Tessa Copp builds that case that including the ultrasound finding as a diagnostic criteria has led to many women are being mistakenly told they have PCOS when they either don’t have PCOS or when it’s a mild case of androgen excess that they will outgrow. 

Of all the women who are being mistakenly told they have PCOS, possibly the most concerning are the women who have lost their period or are experiencing irregular periods because of undereating. That situation is called either hypothalamic amenorrhea or relative energy deficiency in sport, and it’s common. 

Two things to understand about hypothalamic amenorrhea:
1) It can present with polycystic ovaries, which, remember, just means ovulation is not occurring in that cycle, and 
2) Hypothalamic amenorrhea requires very different treatment than insulin-resistant PCOS. 

As you may know, the conventional treatment for the insulin-resistant type of PCOS is the diabetes drug metformin together with exercise and the strategy of reducing calories, reducing carbohydrates, and just generally, eating less. Now, consider a young woman with hypothalamic amenorrhea, who has lost her period to under-eating, and then is mistakenly told she has PCOS, and so embarks on a plan of eating even less to try to get her period back. When what she really needs to do is to eat more because recovery from hypothalamic amenorrhea requires at least 2500 calories per day for at least six months to regain ovulation. 

That’s one example of the harm of overdiagnosis based on the ultrasound finding. Here’s another. 

Consider a woman with endometriosis who doesn’t yet know she has endometriosis. Her main symptom is severe period pain, but when she undergoes an ultrasound study, she coincidentally also happens to have polycystic ovaries, as remember, many women do. And so, she is told she has PCOS, and mistakenly thinks that is the explanation for her pain. And so tries metformin and low-carb and all the PCOS treatments and finds they don’t help her pain because, of course, they’re not treatments for pain or endometriosis. 

Undereating and pain being misdiagnosed as PCOS is something I hear a lot from patients. And it has made me very sad and motivated to make this episode. 

And none of that is to say that PCOS is always a misdiagnosis because the symptom of androgen excess is real and common. And lots of women do legitimately have PCOS and can benefit from PCOS treatments such as metformin, inositol, and cyclic progesterone therapy, which I wrote a paper about and will discuss in a future episode. And furthermore, lots of women legitimately have PCOS but don’t know they have PCOS because they had a normal pelvic ultrasound and so were mistakenly told they don’t have PCOS when they do. And that’s a problem too.

So, just to summarise. It’s possible—and common—to have polycystic ovaries without having the hormonal condition PCOS. At the same time, it’s possible—and common—to have the hormonal condition PCOS without having polycystic ovaries. 

I hope that’s been helpful and thanks so much for listening. Please share and leave a review. 

And if you want to discuss this topic or ask a question for a future episode, you can do so on my forum at larabriden.com. 

I’ll see you next time when I’ll discuss why endometriosis is, at least in part, a disease of immune dysfunction.