PCOS: Well-Known for Decades – Still Difficult to Diagnose

It is commonly said that PCOS is still under-researched. Do you share this opinion? If yes, why do you think it is the case?

PCOS has attracted massive attention because of the changes in technology. And easy access to knowledge has made everybody aware of PCOS. But people look at technology, like Flo or others, then they start thinking they may have PCOS. So that is the public interest. And when there is a public interest, there is always interest from the scientists.

Let me explain a bit about the history of polycystic ovary. 

It was about 80 years ago that two doctors, called Irving Stein and Michael Leventhal, they were the first to report a case study of seven women. We are talking about the time when there were no ultrasound scans. These women had irregular periods, they had facial hair growth, and they had an operation, which means opening the abdomen. And there were noted polycystic ovaries. So, that's why PCOS is also called Stein-Leventhal syndrome. 

And it is a surprise to everybody that we are still using the same description for the diagnosis of polycystic ovary. It affects from 5 to 10 percent of women globally. More so in some other parts of the world. Over the past few decades, much has been learned about this condition. But many aspects of this condition remain uncertain and they are poorly understood. 

You must realize that PCOS is not a disease. It is a syndrome which means that some women with PCOS may have some common characteristics. But still, we do not know a single gold standard for diagnosis of PCOS. 

It remains of interest for the scientists because they can explore the condition in different ways. And for women, it creates a problem because depending upon the predominance of a particular symptom or clinical manifestation, they are being sent to various specialists. 

They may end up seeing a dermatologist - a skin specialist - because they have greasy skin and extra hair growth. Or may go to see a plastic surgeon because they think a plastic surgeon can sort out extra hair growth. They may end up seeing an endocrinologist because somebody is talking about insulin sensitivity, type 2 diabetes. And they may end up seeing a gynecologist because they have irregular periods. And finally, they may be the first time seeing an IVF consultant because they are failing to conceive. So that means that a woman with PCOS may not be getting the best as some of these specialists, they may have partial or rather their way of looking into the condition. So, I think that this is an issue that needs to be addressed.

Why do you believe it's necessary to raise awareness around PCOS?

I think awareness is critical because of its effect on the various aspects of a woman's life. 

In the early days, effect on the periods because periods are irregular, infrequent. And that creates unnecessary anxiety for a young lady. "Why my period is not coming? Why is it late? Am I pregnant?" And it affects their fertility too because there is unpredictability and especially for women who do not wish to use some form of contraception. 

Secondly, it is the effect of PCOS on the sexuality of a woman, femininity I call it because they have acne which is not very attractive, nobody likes to have much makeup to put on, greasy skin, and hair growth on the areas which are not desired by any woman. So, that is the teenage years, adolescent years, and then comes the childbearing time. Because it takes time, periods are irregular, things may not happen, and they are unnecessarily stressed. So, they may need to seek advice from a specialist. 

PCOS also increases the risk of metabolic syndrome, increased risk of cardiovascular disease, increases risk of type 2 diabetes and, if you're pregnant, it is gestational diabetes, and then the adverse outcome of pregnancy. Even if you manage PCOS well, young ladies who are pregnant with a history of PCOS they still can have an adverse outcome from the point of view of type 2 diabetes. And that's not the end of the story. 

We don't know much about the effect of these male types of hormones - androgen and estrogen. And the postmenopausal phase which is a post-reproductive phase. So, people need to understand that some of these symptoms, when they are brought together, may explain that it may be a polycystic ovary. It's just much easier to manage. And there are medications which can help to manage these symptoms they are experiencing.

Why is the condition so difficult to diagnose?

Over the years, there have been different classifications used, which were conflicting and at variance with each other. And again, in several countries, different definitions are used. And they have been described by different medical specialties.

When we say specialties, there may be gynecologists who are looking at periods side, the IVF experts and fertility experts looking at PCOS from infertility point of view and giving their description of how to diagnose it. And it may be endocrinologist looking on insulin sensitivity and diabetes. 

It was in 2003 when the Rotterdam criteria were agreed. And that meant that a woman should have two out of three conditions. So firstly, it is oligo-anovulation. Oligo means infrequent, and anovulation means none. Thus, ovulation does not occur, which means periods are very, very irregular. 

Second criteria were hyperandrogenism, which means higher levels of male type of hormones - androgen precursors. 

And thirdly, ultrasound scans showing polycystic ovarian appearance which means more than 10 follicles each more than 8 millimeters and they're arranged around the ovary like pearls around the neck. 

But there are issues, as more and more research is done, the definition of oligo-ovulation and hyperandrogenism remains unresolved — every time you discover new elements, from the organ. 

Then, PCOS definition by ultrasound scan has been challenged. And then secondly, there comes obesity. Because of some of the metabolic abnormalities associated with obesity often, I call it pollutes, the definition of polycystic ovary because they have similar abnormalities. Even if ovaries look normal on ultrasound scan, then there may be other glands which contribute to a male type of hormones, such as adrenal gland. And some of their symptoms may overlap with Polycystic ovary, so that confuses the picture. 

Then, there are new diagnostic markers, for example, Anti-Mullerian hormone, AMH, which is now considered to be a more sensitive test for diagnosis of polycystic ovary. And these levels tend to be high even if ovaries look normal. You will say: "Yes, it is likely this lady may have PCOS." And finally, metabolic disorders, insulin sensitivity. So, there's a lot of focus on if that should be the criteria for diagnosis. Because not every woman with PCOS that has that extent of the condition. And as I pointed out previously, there is a group of women with a normal BMI, but on ultrasound scan, they have polycystic ovary. And they do not have any manifestation: their periods are regular, and they are even ovulating. But when you look at the scan, it shows PCOS. 

So, this is the diagnostic dilemma, and this is why it is not easy to diagnose PCOS.

What do you wish every woman understood about PCOS that maybe they don't?

I think knowledge is power. And with modern technology like Flo, which gives you easy access to knowledge, it becomes very easy for people just to know what is the most important feature I may have which makes me prone to PCOS or I could have PCOS. 

What I need to know as a woman "Is there something very serious?", "Is there something you can have which can become cancerous?". So, one has to reassure, and it is not. "Can it be passed over to my daughters when I have them?" So, I think, there are questions which woman has a right to know. The effect of PCOS on their day to day life, which as we said, on their fertility control. And in the long run, what will happen when I stop having my periods? That's why they need to have some understanding that this is a condition, not a disease, but a syndrome which presents itself in various forms.