The NHS has stated that it will consider recommendations to rename polycystic ovary syndrome (PCOS) amid growing calls to reduce delays in diagnosis.
According to Verity, the leading UK charity for PCOS, the condition affects around one in eight women in the UK, but experts say that misunderstandings about cysts and an overemphasis on the ovaries often leads to late diagnoses.
A new consensus statement published in The Lancet, led by researchers at Monash University in Australia, has proposed renaming the condition polyendocrine metabolic ovarian syndrome (PMOS) instead, to more accurately reflect its wider impact on the body.
While NHS England considers the proposed change, misconceptions about this common condition persist and many symptoms are still frequently overlooked.
We spoke to Dr Lucy Hooper, co-founder of Coyne Medical, who has explained what the current diagnosis process for PCOS involves, and has highlighted some early subtle signs to look out for.
What are the main features of PCOS?
Irregular periods, excess androgen levels and polycystic ovaries are the three main features of PCOS that doctors look out for, explains Hooper.
“For PCOS, we look for signs of excess androgen levels, such as testosterone,” says Hooper. “Secondly, we look for signs that your ovaries are not functioning as usual, and for women this is usually signs that their periods are not regular, or that they are not ovulating regularly.
“Thirdly, we look for polycystic ovaries, which is something that you see on an ultrasound. It’s when you have lots of tiny fluid-filled follicles on the ovaries that looks like a string of pearls.”
If you have at least two of these features, you may be diagnosed with PCOS, according to the NHS website.
The NHS also states that symptoms of PCOS usually become apparent during your late teens or early 20s.
Here are six common early symptoms of PCOS to look out that are often overlooked…
1. Irregular periods
“In the first one to two years after your period starts, it’s very common for them to be irregular, but after that they should start to settle down to a regular pattern,” says Hooper.
“If it’s less than 21 days or over 45 days in a cycle length (from day one of the period to day one of the next period) on a regular basis, that is something worth looking into.
“Having maybe one month where you have a really short or really long cycle is not uncommon, especially if you’re ill or stressed, but if it’s a regular pattern, then that’s worth reviewing.”
2. Acne
“Excess testosterone levels can cause symptoms for women, and one of the most common is acne and trouble with their skin,” says Hooper. “Sometimes this is dismissed as normal, especially in teenagers, but there might be an underlying hormone issue which is causing it.”
The doctor says that although many young women often don’t get tested for hormone issues until their acne gets really bad, she recommends seeking tests sooner rather than later.
“Rather than going through lots of different antibiotics for acne or different skin creams, ideally you want to know if you have any hormonal abnormalities sooner to help get you the right treatment quicker,” says Hooper.
“If it’s being caused by underlying biology and is part of PCOS, then something like an oral contraceptive pill can be really helpful for lots of people’s skin issues.”
3. Excess hair
Excessive hair growth usually on the face, chest, back or buttocks, is another common symptom of PCOS, according to the NHS website.
“Excess hair on the skin might also be a sign that there’s an issue with someone’s hormone levels,” says Hooper.”Sometimes excess hair is more obvious in particular ethnic groups than others.”
4. Mood changes
Mood changes are often dismissed as a normal part of being a teenager. However, research shows that hormonal imbalances associated with PCOS can significantly impact emotional wellbeing.
“There has been some really interesting research over the past few years that has looked at depression and mood changes, and some researchers think it may actually be part of the early presentations of PCOS,” says Hooper.
“Therefore, experiencing mood symptoms, especially symptoms that change a lot with your cycle and periods, is something that should be considered as part of a patient’s whole picture.”
5. Weight
Many people with PCOS experience weight problems such as being overweight, rapid weight gain and/or have difficulties losing weight, according to Verity.
“There’s a strong link between polycystic ovarian syndrome and being overweight,” says Hooper.
However, she emphasises that people who aren’t overweight can also be affected.
“There’s a misconception that only people that are overweight or obese are affected by PCOS, but there are actually lots of females that are affected that are of a normal weight,” says Hooper.
6. Darkened skin patches
“There’s also a link between polycystic ovarian syndrome and having insulin resistance,” says Hooper. “One early sign of insulin resistance is acanthosis nigricans, which is when your skin becomes darkened and slightly changes in texture in a skin fold, such your arm pit.
“This is something that can easily be missed or not thought to be related to other symptoms that you have.”