Experts claim young women are being over diagnosed with Polycystic Ovary Syndrome at a rate of one in five.
Since the definition of the disease widened in 2003, the percentage of women worldwide diagnosed with PCOS has jumped from five percent to 21 percent.
The definition now includes cysts on the ovaries, high levels of male hormones and a variety of other signs and symptoms.
Professor Ben Mol, an expert in obstetrics and gynaecology at the University of Adelaide, co- authored an article for the British Medical Journal about the unnecessary labelling of women with PCOS.
He says that the main problem lies in the fact that there are multiple categories and severities of PCOS, but doctors rarely differentiate between them.
“It labels people and gives them stress, and I think it potentially misinforms them about their future,” Professor Mol said.
“One group of women will continue to have PCOS and suffer from that – for them, it’s better to know early – but at the same time, there are young girls and women where all the symptoms will disappear [by their mid-20s or early 30s] without doing anything, and they shouldn’t be unnecessarily stressed.”
Professor Mol says that the increase in the number of women diagnosed with the syndrome directly correlates with the expansion of the diagnostic criteria.
It’s not the legitimacy of doctors’ diagnostic process that he has concerns about, but rather, the criteria itself, as many symptoms now associated with the disease might not present any actual health problems for some women.
“Ultrasound abnormalities and blood abnormalities can potentially go without any complaints or problems, but you still fulfill the criteria,” Professor Mol said.
“We have very limited data that shows that subsequent interventions improve outcomes for women [diagnosed with PCOS].”
When Jade Dobson was diagnosed with Polycystic Ovary Syndrome at 16-years-old, her doctor told her it was “nothing to worry about”.
It took her all of about 15 minutes to get home, Google her new disease and feel just the opposite.
“The doctor said that PCOS was ‘probably’ the reason why I still hadn’t gotten my period. I wasn’t given any extra information or booked in for tests and what I found online was terrifying,” Ms Dobson said.
“Extra testosterone, hair on my face, cysts on my ovaries, weight gain and infertility? It’s safe to say I was in absolute horror and shock. Even though I didn’t look like I was growing facial hair or putting on weight, I felt like this must have been what I had.”
She eventually did get her period at 17-years-old, but they were intensely painful, only coming twice a year to start with then every two days for 15 days at a time.
A second doctor neglected to come through with test results that proved PCOS – which occurs when a woman’s ovaries or adrenal glands produce more male hormones than normal – was the root of her problems.
It labels people and gives them stress, and I think it potentially misinforms them about their future
When she became engaged at 21-years-old, she still didn’t know if having kids was on the table and it wasn’t until four years after her initial diagnosis that she finally got answers.
“I had the blood tests, the ultrasounds and all the work done. It turns out that I only have one ovary with a couple of cysts on it that are blocking my hormones from stimulating enough to ovulate every month, and the other one is completely healthy.” Ms Dobson said.
“[My doctor] explained that when I want to get pregnant, I have to go onto a hormonal medication which will supplement what I’m getting.”
While it was welcome news for Ms Dobson, the exact nature of her condition – that comes with a lifelong disease label – still remains a mystery, as it does for many young women.
“My doctor said, ‘You have a sprinkle of PCOS’ – what does that even mean?” Ms Dobson said.
“So, my very specific condition that is blocking my ovulation is PCOS… but my friend who is constantly bleeding has PCOS too? And my other friend, who has cysts all through her abdomen and throws up everyday has PCOS as well?
“While I’m sure we all have PCOS, there must be different varieties and different kinds of help we need.”
Professor Mol says that going forward, we need further and better research, that takes into account the different categories and severities of PCOS.
If doctors and experts alike continue the practice of labelling women with a blanket diagnosis, Professor Mol says that it has the potential to do more harm than good – especially in terms of its effects on a patient’s mental health.
Ms Dobson is backing the calls for further research into the issue, as she doesn’t want other women to suffer the same anxieties and uncertainty that she did.
“It’s so scary, especially being a young girl with access to the Internet, but otherwise no idea of what’s going on,” Ms Dobson said.
“Doctors and researchers really need to care about this more, and find a way to narrow it down so we can all get the help that we need.”