Polycystic ovarian syndrome: ‘There’s more information on outer space than there is on the reproductive system of a female’

Though menstrual cycles are taught in school, conditions affecting the womb are not – often leaving those with irregular periods or other symptoms in the dark about what is going on in their body.

One such condition is polycystic ovarian syndrome (PCOS), which affects one in five women of childbearing age, according to the Health Service Executive (HSE).

There is no cure for PCOS and symptoms can include irregular periods, excessive hair growth and fertility problems. Despite how common the condition is, the lack of conversation about it can have a huge impact on those who have symptoms.

Victoria Twamley, a 23-year-old student from Dublin, had symptoms of PCOS as soon as she started menstruating, but only received a diagnosis in 2020. Her journey with the condition even forced her to defer this college year.

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As a teenager, her periods were few and far between, but she put it down to generally being what she described as a “stressed individual”. When they did come, they were heavy and caused her a lot of pain.

Twamley was concerned about what was going on in her body, but since she had no “inkling” of such conditions, she didn’t want to bring it up with those around her. “I hadn’t gotten [a period] in a year so I got really worried. I was kind of ashamed to talk about it with my family or the doctors because it’s kind of embedded in our brains to not talk about stuff like that, so I hid it for a while,” she said.

Despite making the terrifying leap to talk about her issues with a doctor, Twamley said she was told to “just lose weight” and her period “would come back”.

Her sporadic periods continued until her early 20s when she bled non-stop for four months. After a number of visits to the GP and an ultrasound, she received her diagnosis of PCOS.

Many things she experienced suddenly made sense – the irregular periods, excess hair growth and even some mental health issues. On reflection after receiving her diagnosis, Twamley felt let down by the education on periods in schools. While typical cycles are covered, menstrual irregularities are not. “I don’t think the education system here supported people [with menstrual conditions], where you could actually openly speak about issues involving the sexual reproductive system.”

This lack of conversation would, naturally, impact the overall attitude in schools around menstruation, re-enforcing the idea that periods are meant to be kept secret.

In Twamley’s case, she “never had conversations” with her peers about periods in school. “It was just too taboo to even mention the word ‘period’. You’d see girls passing tampons across the room through their sleeves if someone needed one.”

Even in her own friend group, periods didn’t become a topic of conversation until they had finished school and began to experience the world. When the CervicalCheck scandal unfolded, Twamley said they began to open up with each other about menstrual health. “I’d throw it into the group chat and be like ‘does anyone else get that?’ and they were like, ‘no’. That’s when I started to do my own research.”

Having these conversations helped her to seek a diagnosis and, looking back, Twamley feels they would have been beneficial at a younger age. Researching the condition brought its own troubles, however, as the exact cause of PCOS is not known. “The fact there is more information out there on outer space than there is on the reproductive system of a born female is quite scary,” Twamley said.

At a later stage in her PCOS journey is Mary-Jo Maguire, a nutritionist from Co Meath who now lives in Portugal. She was also diagnosed at the age of 20, 11 years ago. Just like Twamley, her periods were sporadic and when they did come, they were “horrendous, really heavy and painful”.

Her education was also interrupted as a result of her PCOS, despite not knowing exactly what was going on, and she had to leave school as a teenager due to the pain. “I definitely knew there was something wrong and different. Friends would tell me they knew exactly when their period would come and I was like: ‘Are you serious? Oh my god, I haven’t a clue when mine is going to come.’”

In some ways, she felt “grateful” that it didn’t come every month because of just how painful it was.

Maguire visited specialists about her hormones and lack of periods as a teenager, mainly as a result of her mother’s encouragement, but it wasn’t until she received the official diagnosis that she was put on the birth control pill. She, like many others with PCOS, was told to take the pill and to come back when she wanted to get pregnant.

At 28, Maguire came off the pill for the last time and since then, through adapting a Mediterranean diet and some lifestyle changes, her period is now, as she describes, like “clockwork”.

“I couldn’t have imagined that and I’m doing that completely without birth control – no medication, just lifestyle changes and a bit of supplements.”

In her career as a nutritionist, she specialises in PCOS and wants to help women “get their power back” and be aware that there are other options out there when it comes to the condition. “What happens is you come out of that diagnosis feeling completely deflated. You’re told basically take this pill. There’s no empowerment for the woman to take action to look after her own hormones and health.”

Insulin resistance is another aspect of PCOS that affects the majority of those with the condition. According to Maguire, it causes the hormonal imbalance and disrupts ovulation. To manage it, she tells her clients to incorporate low GI carbohydrates, and reduce sugary or high fat foods.

In terms of fertility, Maguire said that “being told [you can’t conceive] is a horrible thing to hear. So many women are told that and it’s something that sticks with you throughout your 20s. It’s this kind of underlying worry.

“You’re almost nearly against the clock because you feel more under pressure as a woman with PCOS that you should try earlier because you mightn’t be able to get pregnant maybe later in your 30s, but if you can make the changes in your diet and lifestyle and, with supplements and support, you can get results. Maybe you do need help with medication as well, but I do believe there’s a role for both and it can make a huge difference.”

PCOS is, as Maguire said, “not a life sentence or something to be afraid of” but until conversations around menstrual conditions are brought into a classroom, the unspoken stigma may continue to negatively impact teenage girls.