Polycystic Ovary Syndrome (PCOS) is thought to affect one in ten woman. You might think therefore, that it would be a condition which was widely studied and well understood. Shockingly though, we still know very little about PCOS – we aren’t even sure what causes it! It can take women a long time to get correctly diagnosed, with symptoms often being ignored or misattributed.  It is also a condition that can seriously impact women’s lives and that’s why it’s so important that we spread awareness of it: so that more of us can access the healthcare we need.

So what is PCOS?

Many conditions that primarily affect women, or affect women differently, are understudied – this will come as no surprise to you if you read our blog on the ‘pain gap’ – and unfortunately PCOS falls into this category. While we’re not sure of the cause of PCOS, it’s linked to abnormal levels of certain hormones in your blood, including of insulin and testosterone. These hormones can cause a wide variety of effects on your body, including polycystic ovaries. 

Polycystic ovaries are ovaries which have become enlarged and contain a large number of follicles. Despite the name, they aren’t a type of cyst, and many women with PCOS don’t even have polycystic ovaries – just another confusing thing about PCOS.

Do I have PCOS? What are PCOS symptoms?

There are a whole mix of different symptoms for PCOS, and symptoms generally appear by the time someone reaches their late teens or early twenties. Symptoms can include irregular periods or not having a period at all, acne or oily skin, weight gain, thinning hair and hair growth on places like the face, chest or back.  However, about half of women with PCOS have no symptoms at all. Many women only discover they have PCOS when they try to get pregnant and struggle to conceive.

If you think you may have PCOS then check out the NHS website for more information, and consider talking to your GP.

How is PCOS diagnosed?

There’s no invasive tests required to be diagnosed with PCOS. A diagnosis can be based simply on whether you have irregular periods and a blood test which show unusual hormone levels that match with PCOS. You may also need an ultrasound scan  to check whether you have polycystic ovaries, but this might only be necessary if you don’t meet both the previous criteria. Doctors will also try to rule out rarer possible causes of your symptoms. 

Many women with PCOS still struggle for years with symptoms, not getting properly diagnosed. That’s why it’s so important to raise awareness of PCOS and how common it is.

Is PCOS dangerous?

Having PCOS does increase your risk of health issues like diabetes and heart disease. It can also increase your risk of developing endometrial cancer, but the risk is still very low and there are options available to help mitigate this risk.

Can PCOS be treated? Can you get pregnant if you have PCOS?

There’s not a cure for PCOS, but the symptoms of it can be treated and managed. Changes to your diet and certain medications can help control your insulin levels. Contraceptive pills can be used to help regulate your period. Other symptoms, such as hair growth or loss, can be treated with medications, or through options like laser-treatment.

Most women with PCOS can still get pregnant, and there are a variety of treatments available to help. The most common route is by using medications but, if these are ineffective for you, there are also other options such as having a minor surgery on your ovaries or IVF.

Where can I find out more about PCOS?

The NHS website is a great place to start for information on PCOS symptoms, diagnosis and treatment. Reading about women’s experiences of PCOS can also be really helpful. For example, Ashley Levinson has been a campaigner on PCOS for many years and has written a great blog on her story.

What else needs to be done?

More research is needed into PCOS so that we can understand it better, shorten how long it takes to get a diagnosis and find even more effective treatments. A good start is signing a petition to the UK Parliament calling for greater attention to be given to PCOS. You can also try talking to a friend about PCOS, or posting about it on social media to help spread the word!