PCOS, or polycystic ovary syndrome, is thought to affect 10% of women. It's also one of the most common causes of fertility issues in the UK — in fact, 80% of women with the condition are said to experience difficulty conceiving children. However, despite being such a common issue, it's still relatively misunderstood and under-researched.
However, we are beginning to learn more. Not only does PCOS have the potential to impact fertility, recent studies have shown that it can be associated with other physical and mental health concerns, too. One 2024 study conducted by Taiwanese researchers found a link between PCOS and suicide, finding that women with PCOS were roughly eight times more at risk of suicide.
Similarly, a 2023 study found that women with PCOS may face a 47% increased risk for death at a younger age as a result of complications associated with the condition. “The results highlight the need for improving the care of diabetes, lung infections and cardiovascular diseases to prevent the excess mortality of women with PCOS,” said co-author of the study, Terhi Piltonen, M.D., PhD, of the University of Oulu and Oulu University Hospital in Oulu, Finland.
Another recent study from California examined data from the past few decades to determine how PCOS impacted the brain. The study found that, over time, women with PCOS tested 11% lower on cognitive control, verbal learning and memory and language and attention functions. “Nothing in this data is saying PCOS is related to significant cognitive decline; all it’s saying is that we notice a difference in cognitive function,” said Heather Huddleston, the study’s lead author.
Evidently, there's still a lot we are learning about PCOS. Even though it affects 1 in 10 women, it may have a greater impact than we realise. Here's a breakdown of what we know about the condition, including a first-hand account of one woman's experience.
What is PCOS?
The syndrome is famously difficult to define, but it is basically a set of symptoms indicating a hormonal imbalance that affects the way a person’s ovaries work.
What are the symptoms of PCOS?
To be formally diagnosed, you must show two out of the three following symptoms:
- Irregular periods, which means that the ovaries aren’t regularly releasing eggs
- Excess androgens, which means high levels of male hormones, are being released in the body
- Polycystic ovaries, which means that the ovaries become enlarged and contain fluid filled sacs which surround the eggs.
Some women may never know they have PCOS since their symptoms aren’t bad enough to suggest a problem, others could lose their period, struggle with fertility, develop acne, hair loss or anxiety.
The sleepiness is real.
How is PCOS diagnosed?
For Jess, as is the case with most women, it was losing her period that raised the first red flag. At age 20 she had been on and off the pill for three years, so she had seen her cycle change before; however, once she had missed six consecutive periods she thought it was probably time for her to get it checked out.
After ultrasounds and blood tests doctors discovered a few cysts on her ovaries, she was diagnosed quite quickly with PCOS.
Last year, new International Guidelines were released to help medical professionals and women with PCOS navigate the condition. The guidance included revised diagnostic criteria. Now, the condition is diagnosed with hormone tests instead of ultrasound.
The new guidance also encouraged doctors to consider factors beyond reproductive health such as weight, diabetes, heart disease and mental health.
What are the treatments for PCOS?
Following diagnosis, doctors will usually recommend trying to lose weight as one form of treatment. Obesity and weight gain are strongly linked to PCOS, and studies have shown that losing just a small amount of weight can help to rebalance your hormones.
"If a woman is overweight then as little as 5% weight loss can regulate periods, lead to more regular ovulation, improve excess hair growth and lower insulin levels," Dr Rebecca Poet, founder of The Women’s Hormone Clinic says. "Regular exercise and a focus on diet and nutrition will help to achieve and maintain weight loss."
The second recommendation is the oral contraceptive pill, as it regulates your cycle and is an effective treatment for a number of the other symptoms people with PCOS can experience.
Dr Poet says that this is only a good option for those with PCOS who are not looking to get pregnant, of course. "The hormones in birth control pills may help regulate menstrual bleeding and control heavy periods," she says. "The pills also may help reduce excessive hair growth and acne."
Third is a drug called metformin, which increases your body's sensitivity to insulin levels. "This leads to insulin levels falling to normal levels and helps with hormonal balance and aids weight loss which in turn leads to more regular periods, ovulation, and improving excess hair growth," Dr Poet says.
The updated guidance has addressed It also addresses the need for new approaches to care, acknowledging that more personalised treatments and therapies are needed.
How should people with PCOS deal with their fertility?
"Having PCOS is the most common cause of female infertility, however it is important to note that not all women with PCOS will have trouble conceiving," Dr Poet says. "If things are difficult then there are several treatment options available and through these, the majority of women are able to get pregnant. Adopting a health lifestyle will give you the best chance of getting pregnant naturally as is true for all women, not just those with PCOS."
What it's really like to have PCOS
Above all, Jess found the weight loss suggestion unhelpful in combatting her own experiences of PCOS.
“While losing weight may work for some, my BMI at the time was perfectly healthy and to lose the amount of weight recommended by my doctor would have put me in the ‘underweight’ category,” she says.
There were further complications when it came to dealing with her own fertility: "I had also decided to come off of the pill because I personally didn’t want to be putting the chemicals in my body when I no longer needed it for contraception. In my eyes, taking the pill again would be like putting a plaster on the problem and not getting to the root of it. I left the doctor’s surgery feeling emotional, lost and confused by my own body."
"It took lots more terrible appointments where I was told, ‘If you want to have a baby you should start trying sooner rather than later’, and nearly four years of missed periods, to convince me that I needed to try other methods.
It took working out what was best for her own body before she found her best ways of treating PCOS.
"I started doing lots of reading on the topic and found tons of research linking stress, both mental and physical, to hormonal imbalances. I learned that my packed social calendar, the toxins in my beauty products and poor quality animal products in my diet could actually be negatively impacting my already delicate hormonal system. This was revolutionary for me: finally there seemed to be someone telling me that not only might I be able to get my hormones in check and my period back, but I could be healthier and happier too.
"I slowly stopped doing all the exercise that I had been told to do and eating all the protein I had been told to eat, swapping it for walking, yoga, hot baths, nights in and more plant based meals. It took nearly six months of consciously changing my habits, but slowly my dry skin went away, my sleep improved and, most miraculously, my period came back. As I’m writing this I’m having my sixth period in as many months.
“Of course, everybody is different and what worked for my symptoms might not work for someone else, but what is important to know is that there are options out there if you’re willing to try them. Having PCOS can make you feel lonely and misunderstood, but that shouldn’t be the case. It is such a common problem so it's time we talked about it more.”
If you are concerned about PCOS, it's always recommended to book an appointment with your GP to discuss diagnosis and treatment. You can find your local GP here.
