What you need to know about polycystic ovary syndrome (PCOS)

What are polycystic ovaries?

Polycystic ovaries happen when the ovaries become slightly bigger than usual and contain many small fluid-filled sacs (called follicles) that are less than 8mm in size. These sacs are where eggs normally grow, but in polycystic ovary syndrome (PCOS), the sacs often don’t mature properly and don’t release an egg. Even though the name includes the word “cyst,” these are not true cysts, they’re just small, undeveloped follicles. 

What are the symptoms of PCOS?

Symptoms of polycystic ovary syndrome, or PCOS, will usually become apparent in your late teens or early 20s. However, it’s important to know that not all women with PCOS will have all the symptoms (some women only experience problems with periods, or are unable to conceive, or both), and that having each of the symptoms doesn’t always mean you have PCOS. The symptoms you experience with PCOS can also vary from mild to severe; it all depends on each individual. 

The most common symptoms of polycystic ovary syndrome (PCOS) include: 

• Menstrual problems: irregular periods or no periods at all 

• Difficulty getting pregnant (due to irregular ovulation or no ovulation) 

• Excessive hair growth (hirsutism) on the fact, chest, back, or buttocks 

• Weight gain 

• Thinning hair and hair loss 

• Oily skin and acne 

What causes polycystic ovary syndrome?

The causes of PCOS are unknown, but it often runs in families. The leading association is with abnormal hormone levels in the body. This includes high levels of insulin, the hormone that controls the body’s sugar levels, androgens such as testosterone, and the luteinising hormone that stimulates ovulation. It also includes lower-than-normal levels of progesterone, the sex-binding hormone globulin, and the follicle-stimulating hormone secreted by your pituitary gland. 

Most women with polycystic ovary syndrome are resistant to insulin’s actions in the body, and so, the body produces even higher levels to overcome it. This, in turn, results in increased production and activity of hormones such as testosterone. The amount of insulin your body produces increases if you are overweight or obese, leading to an increase in symptoms. 

How is polycystic ovary syndrome diagnosed?

If you experience any of the symptoms listed above, you should book an appointment with your GP as soon as possible. They will go over any symptoms you’re experiencing to rule out other potential causes and check your blood pressure.  

They will also arrange for you to undergo a series of hormone tests to find out whether any excess hormone production is caused by PCOS or another hormone-related condition. You may also need to have blood tests to measure your hormone levels and screen for high cholesterol or diabetes, and have an ultrasound scan to see if you have a high number of ovarian follicles. 

Diagnosis will usually be made if other causes of the same symptoms have been ruled out by a doctor or specialist and you meet at least 2 of the 3 findings of the Rotterdam criteria: 

• You have irregular or infrequent periods (this indicates that your ovaries do not release eggs regularly) 

• Your blood test shows high levels of ‘male hormones’ such as testosterone, or you display the signs of excess male hormones 

• Scans show you have polycystic ovaries  

Your GP can then help treat you, or you may be referred to a specialist gynaecologist (a specialist in the female reproductive system) or an endocrinologist (a specialist in hormone conditions). You may also be offered annual blood pressure and diabetes checks. 

What treatment is available for polycystic ovary syndrome?

Unfortunately, polycystic ovary syndrome cannot be cured, but there are ways to help manage your symptoms. Treatment options will vary from person-to-person, because no two people will experience the same symptoms in the same way.  

A number of medicines or treatment programmes can be used to help different PCOS symptoms: 

Irregular or absent periods 

You may be recommended the contraceptive pill to induce regular periods, or an intermittent course of progestogen tablets to induce periods (monthly up to every 3 or 4 months). This can help reduce the long-term risk of cancer of the womb lining which is associated with not having regular periods. 

Other hormonal contraception methods, like intrauterine system (IUS), can also help to reduce the risk by keeping the womb lining thing, but it may not cause periods. 

Fertility problems 

The first suggested treatment to help with pregnancy is clomifene, a medicine that encourages the monthly release of an egg from the ovaries. Letrozole is also sometimes used to stimulate ovulation instead of clomifene. This is an ‘off-label’ use. 

If this doesn’t work, metformin, a medicine most commonly used for type 2 diabetes, may be recommended to lower insulin and blood sugar levels. In addition to stimulating ovulation, it can also support your long-term health by lowering cholesterol and reducing the risk of heart disease. Use of metformin for PCOS symptoms is also ‘off-label’.  

Find out more information here about the possible benefits and disadvantages of metformin for PCOS from the National Institute for Health & Care Excellence. 

If you can’t get pregnant using oral medication, you may be offered or wish to explore in vitro fertilisation, also known as IVF. This involves an injection of a type of medicine called gonadotrophins to stimulate the ovaries to produce multiple egg-containing follicles during an IVF cycle. The eggs are then collected from the ovaries and fertilised outside the womb, before being placed back in. However, there’s an increased risk of ovarian overstimulation, which may lead to multiple pregnancies. 

‘Off-label’ means that a medicine isn’t licensed for that particular condition, in this instance PCOS, but that a doctor thinks it is likely to be effective, and the treatment’s benefits outweigh any possible associated risks. 

Unwanted hair growth and hair loss 

Excessive hair growth and hair loss can be treated using the combined oral contraceptive pill. Eflornithine cream (not available on the NHS in every local authority) can also be used to slow down facial hair growth, although it doesn’t remove hair or cure unwanted facial hair, so it can be used alongside a hair removal product, with improvement seen around 4 to 8 weeks after starting. 

Laser hair removal may be available on the NHS in some parts of the UK. Sometimes, anti-androgen medicines, like spironolactone, flutamide, finasteride, and cyproterone acetate, may be used, but aren’t suitable if you’re pregnant or trying to get pregnant. 

If you experience hair loss on the top of your head, a minoxidil cream may be recommended for use on scalp, but again, it is not suitable if you’re pregnant or trying to pregnant. 

Treatments for other symptoms 

Other treatment includes: 

• Weight management medicine, if you’re overweight or obese 

• Statins to lower high cholesterol levels 

• Acne treatments if you have skin outbreaks 

Surgery

One treatment option for fertility problems associated with PCOS, if medicine doesn’t work, is a minor surgical procedure called laparoscopic ovarian drilling (LOD). You’ll go under general anaesthetic, and your doctor will make a small cut in your lower torso, passing a long, thin microscope called a laparoscope into your abdomen. The ovaries will then be treated surgically using heat or a laser to destroy the tissue that’s producing androgens, or male hormones, to restore the normal function of your ovaries. 

What lifestyle changes can I make when living with PCOS?

The main lifestyle change you can make, particularly if you are overweight or obese, is to lose weight. The overall risk of developing long-term health problems greatly diminishes when your BMI is in the normal range of 18.5 to 24.9. Losing just 5% of your weight can lead to a significant improvement in your PCOS symptoms.  

Regardless of your weight, regular exercise and a balanced diet, rich in fruit, vegetables, whole foods, lean meats, and fish and low in sugar, can really help. A GP can refer you to a dietitian if you need specific dietary help. 

What are the associated complications of PCOS?

You may often only hear of polycystic ovary syndrome in the context of fertility, as it is the single most common cause of infertility in young women. But it is also a lifelong condition that has several different complications that can occur as a result. 

• Type 2 diabetes – there’s an increased risk of type 2 diabetes if you have PCOS and insulin resistance. It’s 40% more likely to occur in women who are overweight, but can happen regardless of weight. 

• Cardiovascular disease – Many risk factors for heart disease are increased with CVD, and are related to insulin resistance and obesity. 

• Endometrial cancer – women who have PCOS have an increased risk of endometrial cancer due to infrequent periods or the complete absence of them altogether. 

• Pregnancy – women with PCOS have a clinically significant increased risk of pregnancy complications and a higher chance of developing conditions such as pre-eclampsia, premature birth, high blood pressure, and type 2 diabetes, but your midwife and doctor will keep a close eye on all of these. 

• Sleep apnoea – around 20% to 45% of women with PCOS have obstructive sleep apnoea, which causes interrupted breathing while you sleep and, in turn, a reduced sleep quality. 

• Psychological disorders – PCOS is associated with an increased risk of many mental health conditions. Some reports have found it’s 3.8 times more likely for women with PCOS to have depressive symptoms, 5.6 times more likely for anxiety symptoms, and 3.9 times more likely for eating disorders 

Though polycystic ovary syndrome carries potential health risks, it’s crucial to remember that a diagnosis is not the end of the journey. By working closely with your healthcare professionals and prioritising your wellbeing, you can navigate PCOS and empower yourself with knowledge and care.