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Polycystic Ovary Syndrome (PCOS) Guide

PCOS is a chronic and complex condition with several potential reasons behind its cause. Read our guide to understand the condition affecting 1 in 5 women.

SHOP POLYCYSTIC OVARY SYNDROME HEALTH TESTS

Reviewed by Dr Sam Rodgers

25th February 2020

Contents

What is PCOS?

Chapter 1

What is PCOS?

What are the main symptoms of PCOS?

Chapter 2

What are the main symptoms of PCOS?

How is PCOS diagnosed?

Chapter 3

How is PCOS diagnosed?

How could PCOS affect my fertility?

Chapter 4

How could PCOS affect my fertility?

How is PCOS treated?

Chapter 5

How is PCOS treated?

What can I do to control my symptoms and improve my fertility?

Chapter 6

What can I do to control my symptoms and improve my fertility?

What is insulin resistance?

Chapter 7

What is insulin resistance?

What are the long-term effects of PCOS?

Chapter 8

What are the long-term effects of PCOS?

Top 10 FAQs

Chapter 9

Top 10 FAQs

Where can I get help and support?

Chapter 10

Where can I get help and support?

What is PCOS?

Chapter 1

What is PCOS?

PCOS is a chronic (long-term) condition with several potential reasons behind its cause. Find out the ways to control the symptoms of PCOS below.

Polycystic Ovary Syndrome is a common hormonal condition among women of childbearing age. PCOS is a chronic (long term) condition where the ovaries develop many tiny cysts. It is caused by the egg follicles that have not been able to develop as they should. Rather than getting bigger, the small cysts in the ovaries eventually disappear and are replaced by new cysts. Having cysts on the ovaries does not cause ovarian cancer, and these types of cysts don't need to be removed surgically.

PCOS refers to two related conditions – Polycystic Ovaries (PCO) and Polycystic Ovary Syndrome (PCOS). PCOS is a complex condition with various symptoms and how women are affected can differ from woman to woman. Women diagnosed with PCO will have many cysts on their ovaries, but they are not severe and don't lead to the symptoms which are common in women with PCOS. Women with PCO also don't have the hormone imbalances, which are typical of women with PCOS. Hormone imbalances also make it difficult for the eggs to mature and be released at ovulation. This means that PCOS is a common cause of fertility problems in women; however, having PCOS doesn't mean you won't be able to conceive. It just may take a little longer.

Studies estimate that 1 in every five women will have PCOS; however, approximately 70% of women go undiagnosed (March et al. 2010). Receiving a diagnosis of Polycystic Ovary Syndrome can be both confusing and devastating.

What causes PCOS?

The exact cause of PCOS is unknown. However, it is now believed that PCOS may run in families, and there appears to be evidence of a genetic cause.

Another reason why a woman might develop PCOS is if she is overweight. Being overweight alters your hormonal balance, and this appears to precipitate the development of the symptoms associated with PCOS.

Some women may be diagnosed with PCOS when they stop taking the contraceptive pill when they may notice that their periods stop. It is not the pill that has caused PCOS, but rather that the hormones in the pill have masked the symptoms and these become obvious once they've stopped taking it.

Can PCOS be cured?

Unfortunately, it is not possible to cure PCOS. However, there is much you and your doctor can do to control symptoms (and if you're trying to conceive, improve fertility). Managing your lifestyle and taking medication to treat your symptoms can both help. If you think you may have PCOS, then it is important to go and speak about your concerns to your doctor and ask to be assessed for PCOS.

What are the main symptoms of PCOS?

Chapter 2

What are the main symptoms of PCOS?

Among others, common symptoms can include: fatigue, acne or oily skin and mood changes. Learn more about all of the PCOS symptoms below.

The symptoms you might experience with PCOS can vary widely. Some women will have many symptoms and, in some circumstances, these can be quite severe. However, you might only have minor symptoms or not notice any at all. Symptoms can improve or worsen depending on your lifestyle and how well controlled your PCOS is.

Below is a list of the common signs and symptoms of PCOS:

  • Irregular or absent periods
  • Ovarian cysts
  • Overweight or difficulty losing weight
  • Fatigue
  • Hirsutism and thinning of hair on the scalp
  • Acne or oily skin
  • Insulin resistance
  • Infertility
  • Acanthosis nigricans
  • Mood changes, low self-esteem and mental health issues

Irregular or absent periods:

Your periods becoming irregular (or stopping completely) is often the first indication that something may not be quite right. If this is the case for you, now is the time to see your doctor, particularly if your periods have stopped or if you are only bleeding very irregularly. Irregular or absent periods doesn't necessarily mean you have PCOS, and it would be important for your doctor to look at other possible reasons, such as thyroid problems.

Your periods may have become irregular or absent because your hormones are out of balance and/or you have multiple tiny cysts on your ovaries that are preventing you from ovulating every month.

If you have infrequent periods, you may require treatment with progesterone medication to induce a period. See you doctor if you don't have a period for 3-4 months to discuss this further.

Ovarian Cysts:

Your ovaries contain thousands of eggs, all of which are present from birth. Each egg is surrounded by a group of cells that develop into a small follicle. If a woman has regular periods, one of these follicles grows to about 20mm diameter and then releases its egg at ovulation. In contrast, polycystic ovaries contain many small follicles, each containing an egg. These follicles have started to grow but are unable to reach a mature size. Instead, they remain about 2-9 mm in diameter. A polycystic ovary usually contains more (around 12) of these small follicles or cysts. These cysts do not get any larger. Instead, they disappear to be replaced by newer cysts. In general, they are not the type of cyst that require surgical removal and do not cause ovarian cancer. Ovarian cysts are a common symptom of PCOS and often show up on an ultrasound scan. However, you can still be diagnosed with PCOS and not have any cysts.

Overweight or difficulty losing weight:

Being overweight or finding it difficult to lose weight is commonly associated with PCOS and causes the most challenges for women both physically and emotionally. In particular, having a Body Mass Index (BMI) of greater than 30 can worsen the physical effects of PCOS. Both the symptoms experienced and the long-term consequences (see chapter 8 – Long Term Effects of PCOS) of having PCOS are affected by having a high BMI. Unfortunately, the very nature of the condition makes it difficult to lose weight and adds to the emotional burden a woman with PCOS experiences. However, both lifestyle changes and symptom management can have significant benefits in helping with weight loss (see chapter 6 – What can I do to control my symptoms and improve my fertility?). It is also true that some women may be of normal weight and still have a PCOS diagnosis. We sometimes refer to this as 'lean PCOS'.

Fatigue:

Fatigue is a common symptom of PCOS. Symptoms of fatigue include feeling tired in the day, struggling to concentrate, mood swings and headaches. Fatigue can be due to sleep disturbance, such as Obstructive Sleep Apnea (OSA).

OSA is characterised by a frequent complete or partial obstruction of the airway as you sleep. Many people don't know that they have OSA, and it may be their partner who is first to become aware of it. Symptoms include snoring, choking or gasping during sleep and frequent waking. OSA is exacerbated by being overweight, hence why women with PCOS may experience this undesirable symptom.

If you think you may have OSA, it is important to speak with your doctor. Your doctor may not treat mild OSA, but if it is severe, there are treatments available to help you get better quality sleep and therefore feel less fatigued during the day.

Hirsutism and thinning of hair on the scalp:

Women with PCOS can have two distinct types of hair patterns; hirsutism, and the less common problem of the thinning of hair on the scalp. Hirsutism is the unwanted body or facial hair that develops on the face, neck, chest, abdomen, lower back, bottom or thighs. Women may also notice that they start to lose hair on the head, commonly known as male pattern baldness. Not all women with PCOS will have hirsutism or notice hair thinning, but those that do find these very distressing symptoms.

An excess of hormones called androgens causes hirsutism and the thinning of hair on the scalp. An androgen is a male sex hormone such as testosterone and 60-100% of women with PCOS will have raised androgen levels. All women naturally have a small amount of testosterone in their bloodstream, however in PCOS this level is higher than usual and as a result causes the development of hair where women wouldn't normally expect it, and shedding of hair on the head.

Hirsutism in women can range from being mild to severe. You can assess the degree to which you are affected by hirsutism on the Ferriman-Gallway Score (see Appendix 1).

Acne or oily skin:

Raised androgen levels can also cause acne and oily skin which can affect the face, back and neck. Acne can be an emotionally distressing condition to live with, but a combination of lifestyle changes, dietary improvements, supplements and medication can help. See Chapter 6 for more information on the lifestyle changes you can make to improve your skin.

Insulin resistance:

As many as 70% of women with PCOS have what is called insulin resistance. Insulin resistance means that the cells in the body are resistant to the effect of normal insulin levels, so to compensate, the pancreas produces more insulin to keep blood sugar normal. This raised level of insulin may be one of the reasons why PCOS develops.

Insulin resistance can be managed with dietary improvements, supplementation and prescribed medication. See Chapter 7 for more information on Insulin Resistance.

Infertility:

Many women find out they have PCOS when they stop contraception and try and start a family. If you are under 35 years of age and have been trying to conceive for 12 months or longer or over 35 and have been trying for six months or more, then this is the time to see your doctor for help and advice. If you are not ovulating regularly, then it will take you longer to conceive. If you are not ovulating at all, it will not be possible to become pregnant without treatment. The majority of women with PCOS do ovulate, but it can be as infrequently as only a few times a year. A combination of lifestyle changes and treatments from your doctor can help you to ovulate more regularly and optimise your ability to conceive. See Chapter 4 for more information on PCOS and fertility.

Acanthosis nigricans:

Acanthosis nigricans is the name given to dry, dark patches of skin that usually appear on the neck, groin or under your arm. Acanthosis nigricans is more common in people with dark skin. Treatment of acanthosis nigricans is through a combination of lifestyle changes and medication to balance your hormones and insulin levels.

Mood changes, low self-esteem and mental health issues:

The symptoms of PCOS can affect your mood and self-esteem, especially if you suffer from some of the more visible symptoms such as weight gain, hirsutism and acne. However, research shows that PCOS can also lead to severe mental health issues, including anxiety, depression, and eating disorders.

PCOS is a debilitating condition, both physically and emotionally. If you feel that your mood is affected, take the time to discuss this with your doctor, as you don't need to suffer in silence. You can read more about how to cope emotionally and where you can get support in Chapter 6.

How is PCOS diagnosed?

Chapter 3

How is PCOS diagnosed?

It can take a long time to get a diagnosis of PCOS, below we give some of the characteristics that could prompt a conversation with your doctor about an assessment.

Unfortunately, it can take a long time to get a diagnosis of PCOS and, in some circumstances, it may be many years before you get a definitive diagnosis. PCOS is a complex condition with varying clinical presentation and degrees of severity, making it challenging to diagnose. Also, there is no individual test that can diagnose the condition. Until recently, there had also been no agreement amongst clinicians on the accurate diagnostic assessment of PCOS resulting in controversy on how to effectively diagnose PCOS.

In 2018 the International evidence-based guideline for the assessment and management of PCOS was published. These guidelines endorse the Rotterdam PCOS Diagnostic Criteria, which define the syndrome by the presence of at least two out of the following three characteristics:

  1. Signs or symptoms of high androgens (unwanted facial or bodily hair, loss of hair from the head, acne or an elevated blood level of testosterone) after other causes for this have been excluded.
  2. Irregular or absent menstrual periods after the exclusion of other causes.
  3. Polycystic ovaries detected on ultrasound scan.

If you think you have two or more of the above characteristics, ask your doctor to assess your likelihood of having PCOS. You should ask your doctor to base your assessment on the Rotterdam PCOS Diagnostic Criteria.

Your doctor will assess whether or not you have regular periods. The definition of irregular periods are cycles which are shorter than 21 days or longer than 35, or fewer than eight cycles per year.

Your doctor will arrange an ultrasound scan of your abdomen to look for cysts on your ovaries. However, if you already have 2 out of the three criteria, then an ultrasound scan may not be necessary. It is important to remember that cysts on your ovaries are not necessary for a diagnosis of PCOS.

You will also be able to explain to your doctor how affected you are by unwanted facial or bodily hair, loss of hair from your scalp and acne.

To understand your PCOS better, you may like to have some blood tests taken. You can see the blood tests recommended for PCOS here.

How could PCOS affect my fertility?

Chapter 4

How could PCOS affect my fertility?

The best way to optimise your fertility when you have PCOS is to make the right lifestyle changes, this chapter covers the different changes to consider.

Being diagnosed with PCOS doesn't mean that you won't be able to conceive. The majority of women diagnosed with PCOS will go on to have a baby, but it may mean that it's harder to conceive and may take longer. You may also require help from your doctor to help you become pregnant.

Just as with controlling your PCOS, the best way to optimise your fertility when you have PCOS is to make the right lifestyle changes. We discuss some of the lifestyle changes you may need to make in this chapter and provide more detail in Chapter 6.

Ovulation:

If your PCOS is severe, you may notice that you have irregular and/or lengthy menstrual cycles or no periods at all. A hormone imbalance and/or the cysts on your ovaries can prevent you from ovulating regularly or, in severe cases, at all.

If ovulation occurs erratically, it can take longer than the average to conceive. In general, women without PCOS will by 12 months in 80% of cases, have conceived. If you have PCOS, this can take longer. If your menstrual cycle is irregular, you should take steps to help improve your regularity as achieving regular monthly ovulation will give you a better chance of conceiving. It is possible to achieve more regular cycles by a combination of lifestyle changes and, where appropriate, medication to induce ovulation (See Chapter 5 for more information on this).

If you are not ovulating at all, then you will require treatment to promote ovulation. It is also possible to optimise your fertility by making lifestyle changes.

It is important to be aware that it is possible to have regular cycles but not be ovulating or ovulating regularly. If you have regular menstrual cycles but are struggling to conceive, discuss this with your doctor.

Obesity:

A large percentage of women with PCOS will be overweight. Apart from this being very distressing and causing issues with self-esteem, being overweight can have a considerable effect on your fertility by worsening your PCOS symptoms. Obesity, particularly carrying extra weight around the abdomen, increases insulin resistance and hyperandrogenism (excess of male hormones). If you are significantly overweight, you may not be ovulating at all. However, the good news is that by reducing your body weight, even by 5-10%, can reduce your PCOS symptoms but also increase the likelihood of ovulation.

If you are overweight with a BMI greater than 30, you have an increased risk of infertility, miscarriage, gestational diabetes, problems during delivery and after delivery, for both you and your baby. To be eligible for fertility treatments it is very likely that you will also need to have a BMI of less than 30; therefore it makes sense to work on reducing your BMI as soon as you can (See appendix 3 to work out your BMI).

Psychosexual dysfunction:

Psychosexual dysfunction refers to sexual problems or difficulties that may be caused by emotional issues, such as depression, low self-esteem and poor body image. Research shows that psychosexual dysfunction is increased in women with PCOS, with up to 62% of women reporting sexual problems [3]. The physical symptoms of PCOS, such as hirsutism, obesity, irregular periods and infertility, cause a loss of feminine identity and a feeling of being unattractive or unwomanly.

Lacking in self-esteem can impact considerably on your quality of life as well as your sexual relationship with your partner. To optimise the likelihood of conceiving, you should aim to have regular sex, every 2-3 days throughout the cycle. If your quality of life impacts your self-esteem, and sexual relationship with your partner, then speak to your doctor. Your doctor may be able to refer you to a psychosexual counsellor who will support you in improving your self-esteem and help you to regain an intimate relationship with your partner.

How is PCOS treated?

Chapter 5

How is PCOS treated?

Both lifestyle management and drug treatment can play an important part in treating PCOS.

As mentioned in Chapter 1, it is unfortunately not possible to cure PCOS. However, it is possible to treat PCOS so that you can reduce symptoms, and if you are trying to conceive, improve your fertility. Lifestyle management and/or pharmacological treatment can improve the symptoms of PCOS and optimise fertility. We now know that lifestyle management is the most effective way of improving PCOS and should be considered as first-line treatment.

Lifestyle Management:

You can improve the symptoms of PCOS and your fertility by making changes to your lifestyle. Healthy lifestyle behaviours, including healthy eating and regular physical activity, are recommended for all women with PCOS and particularly for women who are overweight. See Chapter 6 for more information on the lifestyle changes you can start doing at home. It is is not always easy to make these changes, and you will need a great deal of motivation, but the benefits can be significant. Setting yourself measurable goals and self-monitoring can enable the achievement of realistic lifestyle goals. However, you may also benefit from support from your doctor or extra support from other experts, such as a nutritionist and personal trainer, to help guide you and keep you on track.

Drug Treatment:

Drug treatment is two-fold: treatment for non-fertility related issues and treatment of PCOS and infertility.

Non-fertility related treatments:

If you are not trying to conceive the most important factor is to control any PCOS symptoms you might be experiencing. The combined oral contraceptive pill is the most common treatment to help alleviate the symptoms associated with hormonal imbalance such as acne, hirsutism, and thinning of hair on the scalp. The combined oral contraceptive pill also helps in regulating a cycle and ensuring that you have a regular withdrawal bleed. However, in some women, the side effects of PCOS, such as an elevated body mass index, high cholesterol and high blood pressure, may mean that the combined oral contraceptive pill is not suitable. If you're considering this treatment, chat with your doctor to see if this would be the right option for you.

Another common pharmacological treatment is the use of the drug Metformin. Metformin is a drug commonly used to treat Type 2 Diabetes and can also be used to treat PCOS. Metformin helps to treat insulin resistance by lowering your insulin levels and blood sugar and by stimulating ovulation (see Chapter 7 for more information on Insulin Resistance). Hopes were high that Metformin would also be an effective treatment for weight gain, however recent research shows that this does not seem to be the case [3]. Metformin may not be suitable for all women and can cause gastrointestinal side effects such as nausea and diarrhoea. Discuss this treatment with your doctor to see if this could be an option for you.

Both the combined oral contraceptive pill and Metformin are much more effective in treating PCOS if taken in combination with lifestyle changes. Remember, lifestyle changes are the key to managing your PCOS, and you can read more about this in Chapter 6.

Anti-obesity medication may be an option recommended for you. There is little research supporting the use of anti-obesity medication for the treatment of obesity in PCOS. However, based on the efficacy of using this medication to treat obesity in non-PCOS adults, it is recognised that, in combination with lifestyle changes, medication such as Orlistat [5] may offer some help in managing weight gain.

Anti-androgen medication, in certain circumstances, may be used to treat hirsutism, acne and thinning of hair on the scalp. However, as previously discussed, the use of the combined oral contraceptive pill is the most effective option in treating these symptoms. If you aren't able to take the combined oral contraceptive pill, anti-androgen medication such as Spironolactone may offer a possible alternative. However, due to the possible side effects of this medication on a developing baby, this treatment must only be used in women wishing to avoid pregnancy.

Treatment for PCOS and Fertility:

The first steps in improving your PCOS and optimising your fertility are to take steps to adjust your lifestyle. Weight loss (if you are overweight), stopping smoking, reducing alcohol and enjoying regular exercise all help to optimise reproductive outcomes. You can read more about the lifestyle changes you may need to make in Chapter 6. Lifestyle management alone may mean you may not need any further fertility treatments. However, if you do need to consider the treatments discussed below, actively managing your lifestyle at the same time will also help to improve your fertility.

With PCOS it is very likely that you are either ovulating irregularly or not ovulating at all. If ovulation is absent or irregular, it is necessary to take steps to become regular to achieve monthly ovulation and therefore, a better chance of conception. Several medications called Ovulation Induction medications can stimulate ovulation. Traditionally, doctors would prescribe a drug called Clomifene (or Clomid) to stimulate the ovaries to ovulate. However, recent research and changes in guidelines state that an alternative medication, Letrozole should now be the first-line treatment for ovulation induction [3]. The likelihood of successfully conceiving is increased to 40-60% with letrozole compared to clomiphene. Some side effects of letrozole are less than those experienced with clomiphene. The risk of having a multiple pregnancy (which raises risks for the mother and babies) appears lower with letrozole than with clomiphene [3]. Both letrozole and clomiphene are more likely to be prescribed by your fertility specialist rather than your GP. If you feel you would benefit from this medication, speak with your GP and asked for a referral to a fertility specialist.

Doctors can prescribe ovulation induction medication in conjunction with Metformin in women who are trying to conceive. On some occasions where ovulation induction medication, such as letrozole or clomiphene is not successful at inducing ovulation, your fertility specialist may prescribe the second-line treatment of Gonadotrophin medication or may offer you Laparoscopic ovarian surgery.

As the symptoms of PCOS and your fertility can be improved significantly with weight loss, women who are morbidly obese (a BMI of 40 or greater) may be offered bariatric surgery. However, due to concerns about potential adverse effects to both maternal and neonatal health, the decision to undergo bariatric surgery should be discussed and considered in-depth with your specialist to make sure it is the right treatment for you.

Finally, if ovulation induction and Metformin treatment are unsuccessful, you may be offered assisted conception treatment to conceive. Assisted conception treatments include IUI, IVF and ICSI.

What can I do to control my symptoms and improve my fertility?

Chapter 6

What can I do to control my symptoms and improve my fertility?

Our guide below explains what to focus on and what to avoid in order to improve and manage your symptoms.

While there is no current cure for PCOS, there is so much that you can do to manage and improve your symptoms, and if you're trying to conceive, improve your fertility. Healthy lifestyle behaviours are recommended for all women with PCOS, regardless of whether or not you are overweight. Let's look at the lifestyle factors one by one:

Diet and Nutrition

There is no specific diet for controlling PCOS; however, the main principles are to follow a diet that is practical and sustainable for you. Due to insulin resistance, it makes sense to keep your intake of refined carbohydrates and sugar low. Switching to whole-grain produce such as whole wheat bread, pasta and brown rice and limiting your intake of white potatoes is also recommended. If you need to lose weight, you may wish to reduce your calorie count to 1,200-1,500 kcal/day.

Ensuring that you have a diet rich in green leafy vegetables, fruits low on the glycaemic index (see Appendix 2) and high protein will support your body to optimise fertility.

Seeking advice from a nutritionist or a dietician can help you to start a diet plan that's best for you and your circumstances.

Caffeine and fluids

While more research is required to understand the impact caffeine has on your ability to conceive; it is well documented that when trying to conceive women should ensure they only consume one caffeinated drink per day. Instead, enjoy naturally decaffeinated beverages and plenty of water. Avoid sugary carbonated drinks such as coke as these contain high sugar levels and will affect your insulin and blood sugar levels.

Alcohol

Not only is alcohol not recommended when trying to conceive, but some drinks are high in sugar and therefore, will make your PCOS symptoms worse. Try to avoid if possible and enjoy sugar-free non-alcoholic alternatives.

Exercise

Women who suffer from PCOS can find it very difficult to find the motivation to exercise, especially when they are suffering from low self-esteem. However, exercising has so many benefits, not only to your physical health but also how you feel emotionally and in reducing stress. Exercising can help to reduce your weight and therefore improve your PCOS symptoms and fertility. For weight loss, we recommend that you do 150 min/week of exercise to include a mixture of cardiovascular and muscle-strengthening exercise. You can take exercise in 10-minute high-intensity sessions, or longer moderate-intensity periods. It is also important to increase your everyday activity levels and to reduce the time you spend in sedentary activities such as watching TV or sitting time.

Sleep

Our minds and bodies need to be well-rested to allow us to repair, recuperate, and get ready for the day ahead. Lack of sleep can raise your risk of developing insulin resistance, and you are more likely to suffer from weight problems. When you are tired, your body produces the hormone cortisol, meant for a 'fight or flight' situation. This releases more glucose sugar into the bloodstream to fuel your body ready for action. It is also common to crave unhealthy foods that are often processed, high in sugar and refined carbohydrates, which in turn leads to weight gain. Good quality sleep is an essential factor in managing the symptoms of PCOS.

If you can get it, eight hours of uninterrupted quality sleep helps you to manage stress adequately, can improve your mood and strengthen your immune system. It can also help to balance the hormones that affect your symptoms of PCOS.

Take a look at our tips to get a better night's sleep:

  • Devise a healthy sleep routine – aim to go to sleep at the same time each night and put your alarm on at the same time each morning - including weekends.
  • Aim for between six to eight hours each night. Making sleep a priority might mean missing out on some things you enjoy, like a party or a box-set binge, but the key to improving sleep is to set and keep to a bedtime routine.
  • Ensure your bed and bedroom is conducive for sleep. Invest in a high-quality mattress and a set of dark curtains or a black-out blind to keep out light.
  • Keep gadgets like a mobile phone, tablet, computer, and laptop out of your bedroom; charge them at night in another room. It's best to banish gadgets completely for at least two hours before bedtime as the blue light they emit can affect your sleep-wake cycle.
  • Lavender scented oils could also help in setting the stage for quality sleep.
  • Avoid eating late or drinking alcohol – a full stomach will make it difficult for you to sleep, and alcohol is a stimulant that will significantly impact on the quality of your sleep.
  • Avoid caffeine and opt instead for warm milk or camomile tea as a night-time drink.

Follow a relaxing bedtime ritual – make an effort to relax and ease your mind into sleep. Try reading a book, enjoying a warm bath, writing in a journal or practising Yoga before bedtime.

Emotions

Depression, stress and anxiety are common complaints with PCOS, but are often overlooked and therefore left untreated. Evidence shows that almost half of women with PCOS suffer from stress, with 35% of women describing their stress levels as "high" [10]. We also know that depression and anxiety levels rise the longer it takes to receive a diagnosis of PCOS.

Depression, stress and anxiety with PCOS can affect your life in many differing ways:

  • Physically – sleep and eating patterns can be disrupted.
  • Psychologically – low levels of motivation and increasing feelings of worthlessness.
  • Socially – your relationships and desire to socialise can be affected.

Research shows that experiencing the symptoms of PCOS can negatively affect mood, self–esteem and body image. This is unsurprising considering the symptoms that many can experience. Experiencing depression, stress or anxiety with PCOS can make it challenging to want to follow a healthy lifestyle and be proactive about your health. This creates a vicious circle of reducing motivation which is difficult to break. However, it is important to overcome these issues as the key to controlling PCOS is to make the right lifestyle choices.

It is natural that being diagnosed with PCOS can lead to a range of feelings and emotions, and your experience may differ depending on where you are in your lifecycle. Many women, who receive a diagnosis of PCOS at a young age, don't fully understand the impact of their diagnosis until later, and this can bring emotions to the surface when struggling with fertility.

Cycle Tracking

When you receive a diagnosis of PCOS, you may be told that you're not ovulating. The majority of women with PCOS do ovulate but possibly not every cycle. You may find out you're not ovulating based on the results of a progesterone blood test. However, it is very easy to take this test at the wrong time in your menstrual cycle, giving you an incorrect result (see blood tests in Chapter 3 for more information on how to accurately time taking a progesterone test).

You may want to find out more about your menstrual cycle to feel empowered and take back control of your PCOS. Try tracking your cycles to find out what is normal for you and if and when you are ovulating. There are various ways you can track your menstrual cycle, from simple apps to taking your basal body temperature or using a fertility monitor. If you are trying to conceive, you can read our Fertility Guide for more information on how to track your cycles to help you get pregnant.

PCOS Supplements

You may choose to consider how supplements may help you control your PCOS. It may help you to take advice from your doctor, nutritionist for fertility expert to find the right supplements for you. Inositol, Omega 3 and vitamin D are often recommended for women with PCOS. Folic acid is also recommended for any woman trying to conceive (please see our Fertility Guide for more information on supplements to help you conceive).

Inositol

Inositol is a popular supplement for women with PCOS. Evidence has shown that this supplement can help hormonal imbalances that can cause the symptoms of PCOS, as well as alleviate any metabolic deficiency. Research conducted by Santini et al. (1992) found that 72% of women with PCOS start and then go on to maintain ovulatory menstrual cycles [6]. Encouragingly, after treatment with Inositol, 40% of women become pregnant.

What is Inositol?

Inositol is a member of the vitamin B group and is found in whole-grains, beans, fruit and nuts. It is also made naturally by the human body. It is important for a variety of biochemical processes, including how your body handles glucose. In the 'Western Diet,' we typically consume 1g a day, which is sufficient for the majority of the population. However, women with PCOS excrete it far more rapidly than those who don't have the condition. Many women with PCOS may consequently be deficient in inositol, which is likely to be one of the causes of the symptoms.

Why may you choose to take Inositol?

  1. Reduces insulin resistance - We often think of insulin as the key that unlocks your cells for glucose to enter. Inositol is part of this process. Because women with PCOS excrete more Inositol that normal, their levels are often not high enough to support this reaction. Supplementing with Inositol can, therefore, help to manage insulin resistance and lower blood glucose [1].

  2. Reduces levels of the male hormone, testosterone - Clinical trials have shown that Inositol can help to reduce serum testosterone [9]. Women with PCOS who take Inositol have around one-third as much of the male hormone testosterone as women who do not use it.

  3. For women with PCOS, reducing levels of male androgens can reduce symptoms and also helps balance hormone levels. If you have a high level of one hormone, it can often lead to you having an imbalance of others as the endocrine system tries to achieve homeostasis.

  4. Less unwanted hair growth - Taking Inositol can also help with unwanted hair growth which is a common symptom of having high levels of male androgens. Women with PCOS who take Inositol show a significant fall in testosterone levels. Researchers believe that Inositol helps women's bodies to clear testosterone more quickly, leading to a reduction in symptoms like unwanted hair [9].

  5. Improved skin - Another side-effect of having an excess of male hormones is acne and oily skin. By reducing testosterone levels, Inositol can play a role in effectively clearing up acne permanently by treating its cause [9].

  6. Regular cycles and ovulation - Many women with PCOS have problems ovulating, and even if they are ovulating, their cycles can be very long. Inositol helps to promote ovulation and cycle regularity.

  7. Better egg quality - Low-quality eggs may not be capable of undergoing fertilization or implantation. Low-quality eggs can even lead to miscarriage, which is one likely reason why women with PCOS have a higher risk of miscarriage. Research shows that by taking Inositol, the number of good quality eggs is improved, as well as clinical pregnancies and delivery rates in women with PCOS [4].

  8. Reduces the incidence of gestational diabetes - As well as finding it more difficult to conceive, women with PCOS also have higher rates of complications with their pregnancies. In particular, they are more prone to developing gestational diabetes (see Chapter 8 for more information on gestational diabetes) A research study of 220 women with PCOS found that those who take myo-inositol during pregnancy are 50% less likely to develop gestational diabetes [11]. If taking Inositol is combined with lifestyle improvements such as improving diet and taking more exercise, then Inositol can significantly improve the risk of developing diabetes during pregnancy.

  9. Lower levels of ovarian hyperstimulation with fertility treatment - In a study of fifty women with PCOS, 2g of myo-inositol was found to reduce the risk of ovarian hyper-stimulation syndrome with ovulation induction treatments, such as with Clomid [1].

  10. Improves mood and positivity - Inositol affects the level of neurotransmitters in the brain, and a deficiency is linked to depression and low mood. Inositol helps the body to modulate serotonin, a neurochemical which is related to feelings of joy and happiness. Taking Inositol supplements may help if you suffer from depression or difficulty maintaining a positive mood.

  11. Reduces appetite and manages food cravings - By helping to control both insulin and glucose levels in the blood, Inositol can help to reduce hunger and cravings. In addition, Inositol appears to prevent food cravings by increasing the release of leptin, the hunger hormone.

  12. Helps with sleep - Inositol communicates with GABA (Gamma-Aminobutyric acid) receptors in the brain. GABA is an amino acid that reduces the activity of neurons in the body and brain. It is important for relaxation, stress relief, and feelings of calm which are important when you need to wind down and go to sleep. If you struggle to sleep at night, then supplementing with Inositol may help.

  13. Lowers cholesterol - Many women with PCOS have high triglycerides and cholesterol levels (see Chapter 8 for more information on these conditions). Myo-inositol used in combination with D-Chiro-inositol lowers cholesterol in women with PCOS, hence reducing cardiovascular risk [8].

Omega 3

Omega 3 balances the important female sex hormones helping to produce better ovulation. Omega 3 may also help to control insulin resistance and elevated cholesterol in women with PCOS.

Vitamin D

During the summer, it is possible to get all the vitamin D you need from sunlight and your diet. However, the Department of Health recommends that everyone (including pregnant and breastfeeding women) should consider taking a daily supplement containing 10mcgs of Vitamin D during the autumn and winter. If you are trying to conceive, it is important to have good vitamin D reserves, and therefore you may also wish to take 10mcgs of vitamin D per day.

What is insulin resistance?

Chapter 7

What is insulin resistance?

Many experts believe that insulin resistance is a key player in developing PCOS and exacerbating the symptoms, so it is important to understand the related risks.

Insulin resistance affects 70% of women with PCOS and is prevalent in both women who are overweight and have PCOS (95%) and in women of healthy weight suffering from PCOS (75%) (Stepto et al. 2013). The condition leads to elevated glucose levels that increase your risk of developing gestational diabetes and Type II Diabetes. Many experts believe that insulin resistance is a key player in developing PCOS, as well as exacerbating the symptoms.

It is not fully understood how insulin resistance impacts on fertility. As well as unbalancing hormones, there is some evidence to suggest that the insulin receptor cells in the womb lining may be impaired and cause lower pregnancy implantation rates. Reduced insulin levels may also have a direct correlation with pregnancy success during IVF. More research is required to appreciate the extent of this current evidence fully.

Long-term risks associated with Insulin Resistance

PCOS and insulin resistance are recognised as risk factors for developing diabetes and gestational diabetes. Diabetes is a debilitating condition and has significant negative effects on your general health. Gestational diabetes occurs during pregnancy and normally resolves after giving birth. It can cause problems during pregnancy and for the new-born baby. Chapter 8 covers both diabetes and gestational diabetes in more detail.

Screening

When newly diagnosed with PCOS, it is essential to assess your risk factors for diabetes. Your doctor will evaluate you based on your family history, ethnicity, age and BMI. However, it is also important to monitor your blood glucose. You can do this by taking an oral glucose tolerance test, fasting plasma glucose or HbA1c blood test. You should repeat this screening on a 1-3 yearly basis depending on the severity of your insulin resistance.

Treatment of Insulin Resistance

The primary drug treatment for insulin resistance in PCOS is with the use of the drug Metformin. Metformin makes the body's cells more sensitive to insulin and helps to rebalance blood sugars. See Chapter 5 for more information on Metformin. However, exercise and weight loss are the most effective ways to improve insulin sensitivity and therefore improve menstrual disturbance, fertility and the long-term risks.

What are the long-term effects of PCOS?

Chapter 8

What are the long-term effects of PCOS?

Below, we take an in-depth look at the different conditions that can be caused by PCOS and how to check for them.

Type II Diabetes and Gestational Diabetes

If you have PCOS, you have a significantly increased risk of developing both Type II Diabetes and Gestational Diabetes. This risk is independent of, yet exacerbated by, being overweight. Type II Diabetes is a common condition that causes the level of glucose in the blood to become elevated and cause insulin imbalance. It is a serious lifelong condition that can lead to complex health needs. Gestational diabetes is diabetes that occurs during pregnancy but rather than being lifelong, usually disappears after giving birth. However, gestational diabetes can cause problems during your pregnancy and labour, such as a larger than normal baby, pre-eclampsia, premature birth, jaundice and stillbirth. Having gestational diabetes also means that you are at increased risk of developing Type II Diabetes in the future.

If you have PCOS, it is important that you screen regularly for Type II Diabetes and when pregnant, gestational diabetes. Your doctor can arrange either an oral glucose tolerance test or an HbA1c blood test. Diabetes screening should be done once diagnosed with PCOS and then every 1-3 years depending on your age, ethnicity and BMI.

Cardiovascular Disease

Cardiovascular disease (CVD) remains one of the leading causes of death in women. While greater evidence of increased risk in women with PCOS is still needed, experts believe that having PCOS does increase your lifetime risk of developing CVD. Therefore it is sensible that women with PCOS are regularly monitored for CVD risk. Your doctor should assess your weight, height and waist circumference and assess your risk factors for CVD based on obesity, smoking, high blood pressure and elevated cholesterol, impaired glucose tolerance and lack of exercise.

Your doctor should assess your CVD risk once you are diagnosed with PCOS and then at regular intervals depending on your likely CVD risk. You can also reduce your risk of CVD by exercising, eating healthily and keeping your BMI within normal levels.

Endometrial Cancer

Endometrial cancer is cancer or the womb and is more common post-menopausal women. However, women with PCOS have 2-6 times greater risk of developing endometrial cancer, which often presents before the menopause, than women without PCOS.

If you have menstrual cycles of longer than 90 days, you can take medication to induce a period to help reduce your risks of developing endometrial cancer. If you have gone for a long time without having a period or start to notice abnormal vaginal bleeding, then it is important to see your doctor. Your doctor can organise a uterine scan to assess the thickness of your endometrium (womb lining).

Non-alcoholic fatty liver disease

Non-alcoholic fatty liver disease (NAFLD) is a term used to describe a range of conditions caused by the build-up of fat in the liver. Some women with PCOS may develop NAFLD, which is associated with an increased risk of developing serious conditions such as diabetes, high blood pressure and kidney disease.

The symptoms of NAFLD are abdominal pain in the upper right quadrant of the abdomen, extreme tiredness, unexplained weight loss and weakness. It is possible to diagnose NAFLD by a liver function blood test, an ultrasound scan and on some occasions, a liver biopsy.

There is no specific drug treatment for NAFLD but losing weight, eating a healthy diet, not smoking, reducing alcohol and taking regular exercise are effective ways of managing NAFLD and the risks of developing the associated conditions.

Obstructive Sleep Apnea

Obstructive Sleep Apnea (OSA) is when your breathing stops and starts while you sleep. It is a common complaint in women with PCOS who are overweight. Some limited studies also show a correlation between OSA and raised androgen levels in women with PCOS. As symptoms of OSA, such as loud snoring, gasping and choking, occur while you are sleeping, it can be hard to tell if you have OSA. Often it is a partner who first notices the symptoms. You may notice that you feel very tired, find it difficult to concentrate, have mood swings or headaches when you wake in the morning.

Should you or your partner feel that you may have OSA discuss this with your doctor and find out what treatment options may be available to you. If you can maintain a healthy weight, it will also help to reduce the likelihood of suffering from OSA.

Top 10 FAQs

Chapter 9

Top 10 FAQs

Here we answer some of the most common questions regarding a PCOS diagnosis and living with the condition.

In this chapter, we answer 10 of the most common questions that women ask when they get a diagnosis of PCOS, and shed some light on what living with PCOS can mean for your health and your fertility.

Can I have PCOS even if I don't have cysts on my ovaries?

It's still possible to have PCOS without having cysts identified on ultrasound scan. You can have the syndrome and therefore, the symptoms associated with PCOS but not necessarily the cysts. If you remember in Chapter 3, we talked about the Rotterdam Diagnostic Criteria – cysts on the ovaries, irregular or absent menstrual cycle and raised androgen levels or symptoms of this, and how you only need to have 2 out of the three criteria to have a diagnosis of PCOS. It's also possible to not have cysts on one scan and then have another scan at a later date and for cysts to be seen. That's the complex nature of PCOS!

Is PCOS rare?

PCOS is unfortunately very common with 1 in every five women having the condition.

Am I at increased risk of cardiovascular disease if I have PCOS?

Studies have suggested that if you have PCOS, then there is an increased risk associated with heart disease, however further studies are needed to confirm that this translates into an increased risk of heart problems. However, your risk of diabetes is raised, which is associated with an increased risk of heart disease.

If I go on a diet, will my PCOS will go away?

Diet and lifestyle is an important element in managing the symptoms of PCOS, but it is certainly not the only treatment available. It's also not possible to cure PCOS, so a special diet won't make your PCOS go away altogether. However, following a healthy diet may mean that you start to feel better and manage your symptoms, especially if you are also able to lose some excess weight. Rather than a quick-fix "diet" which can be difficult to maintain, it is better to make improvements in your diet and lifestyle over the longer term.

Can PCOS be cured?

Unfortunately, PCOS cannot be cured. However, it is possible to take back control and improve your symptoms, especially by losing weight. In women who are overweight losing even a small amount of weight (about 5%) can have a major beneficial effect on your symptoms and in helping your periods to be more regular.

Can PCOS give me mood swings?

Women with PCOS do complain of mood swings, and it may well be that the hormonal imbalance associated with PCOS impacts on how you feel emotionally. However being overweight or suffering from hirsutism or acne can also lower your self-esteem, causing an emotional disturbance.

Can I lose weight if I have PCOS?

Many women with PCOS do find it difficult to lose weight as the associated hormone disturbance can encourage weight gain. However, it is possible to lose weight by eating healthily and increasing your levels of exercise. Many women with PCOS are not overweight and therefore having PCOS does not automatically suggest that you will have weight problems.

Does having PCOS mean I won't be able to conceive?

Having PCOS can make it harder to conceive, but there are lots of treatments to help women to ovulate and become pregnant. Losing weight can have a positive effect on your fertility as if you're overweight, you are less likely to ovulate, and it will also be harder to stimulate the ovaries. There is good reason to be optimistic - the majority of women with PCOS will be able to have children.

Does PCOS run in families?

Recent evidence suggests that if your mother or sisters have PCOS, you are more likely to develop the syndrome. However, this is not always the case.

If I lose weight, will my symptoms disappear?

By losing weight, some women do see an improvement in their symptoms. Weight loss can also improve the regularity of periods. However, this does not work for all women with PCOS, especially if they do not have much weight to lose.

Where can I get help and support?

Chapter 10

Where can I get help and support?

By gaining knowledge of PCOS, you can learn to control your condition.

Every woman is individual and will, therefore, have different emotional and physical needs. Women will respond differently to their diagnosis; some may become anxious and depressed while others might feel motivated and empowered to improve their symptoms. Whatever you feel, it is good to seek out as much knowledge as possible so that you feel that you control your condition, rather than it control you.

Speaking with your doctor is the best place to start. If you are experiencing physical symptoms or suffering from depression, stress or anxiety, your doctor will be able to refer you for specialist help.

Verity is a self-help group for women with PCOS. The group was established in 1997 to improve the lives of women living with PCOS. A dedicated board of volunteer trustees manages the charity, supported by a team of further volunteers. The charity supports thousands of women both in the UK and internationally. Verity offers you support by providing you with accurate information, organising events and local meet-ups, social media support platforms. Verity is also actively involved in new research and lobbying Parliament.

Appendix

Appendix 1:

The Ferriman-Gallway Score

Appendix 2:

The Glycaemic Index

Appendix 3:

BMI Calculator

Glossary of Terms

Acanthosis nigricans

Dry, dark patches of skin that usually appear on the neck, groin or under your arm. Most common in people with dark skin.

Assisted conception treatment

Treatment to assist a woman or couple in conceiving. Treatments include IVF, IUI and ICSI.

Bariatric surgery

Surgery on the stomach and/or intestines of an individual who is significantly overweight to help them in losing weight.

Cardiovascular disease (CVD)

Cardiovascular disease (CVD) is the term often used for heart disease and stroke. It's usually associated with a build-up of fatty deposits inside the arteries which can affect the heart and blood vessels.

Gestational diabetes

A condition that causes the level of glucose in the blood to become elevated and cause insulin imbalance during pregnancy. Gestational diabetes usually disappears after giving birth.

Hirsutism

Hirsutism is the unwanted body or facial hair that develops on the face, neck, chest, abdomen, lower back, bottom or thighs.

Insulin resistance

Insulin resistance is where the body is resistant to the effect of normal insulin levels and more and more insulin is produced to keep the blood sugar normal.

Laparoscopic ovarian surgery

Is a procedure used to remove a cyst or cysts from your ovaries. Laparoscopic surgery is less invasive than open surgery and has faster recovery times.

Multiple pregnancy

A multiple pregnancy is a pregnancy of more than one foetus. Multiple pregnancies can risk both maternal and infant health.

Non-alcoholic Fatty liver Disease

Non-alcoholic Fatty Liver Disease (NFLD) is a term used to describe a range of conditions caused by the build-up of fat in the liver.

Obstructive Sleep Apnea (OSA)

Frequent complete or partial obstruction of the airway as you sleep. Symptoms include snoring, choking or gasping during sleep and frequent waking.

Ovulation

Ovulation is the release of an egg from a woman's ovary. The egg is released from the ovary in response to hormonal signals.

Ovulation Induction

The treatment to induce ovulation in a woman who is not ovulating or may not regularly be ovulating.

Polycystic Ovary Syndrome (PCOS)

Polycystic Ovary Syndrome is a common condition affecting how a woman's ovaries work. It causes irregular periods, high levels of male hormones and multiple cysts on the ovaries.

Pre-eclampsia

A condition that affects some women during pregnancy or shortly after birth and can cause raised blood pressure and protein in the urine. The majority of cases are mild but can lead to serious complications for both mother and baby if not monitored and treated.

Psychosexual dysfunction

Refers to sexual problems or difficulties that may be as a result of physical or emotional problems.

Type II Diabetes

Type II Diabetes is a common condition that causes the level of glucose in the blood to become elevated and cause insulin imbalance. It is a serious lifelong condition that can lead to complex health needs.

References

[1] Artini, P.G., Di Berardino, O.M., Papini, F., Genazzani, A.D., Simi, G., Ruggiero, M. and Cela, V. (2013) 'Endocrine and clinical effects of myo-inositol administration in polycystic ovary syndrome. A randomized study', Gynecological Endocrinology, 29(4), pp. 375–379.

[2] March, W.A., Moore, V.M., Willson, K.J., Phillips, D.I., Norman, R.J. and Davies, M.J. (2010) The Prevalence of Polycystic Ovary Syndrome in a Community Sample Assessed under Contrasting Diagnostic Criteria. Human Reproduction, 25, 544-551.

[3] International evidence- based guideline for the assessment and management of polycystic ovary syndrome (2018) Monash University, Australia.

[4] Kalra, S., Kalra, B. and Sharma, J. (2016) 'The inositols and polycystic ovary syndrome', Indian Journal of Endocrinology and Metabolism, 20(5), p. 720.

[5] Kumar, P. and Arora, S. (2014) Orlistat in polycystic ovarian syndrome reduces weight with improvement in lipid profile and pregnancy rates. J Hum Reprod Sci. 2014 Oct-Dec; 7(4): 255–261.

[6] Santini, M.T., Masella, R., Cantafora, A. and Peterson, S.W. (1992) 'Changes in erythrocyte membrane lipid composition affect the transient decrease in membrane order which accompanies insulin receptor down-regulation', Experientia, 48(1), pp. 36–39.

[7] Stepto, Nigel K. et al. Women with polycystic ovary syndrome have intrinsic insulin resistance on euglycaemic-hyperinsulaemic clamp. Human reproduction 28 3 (2013): 777-84 .

[8] Minozzi, M., Nordio, M. and Pajalich, R. (2013) 'The Combined therapy myo-inositol plus D-Chiro-inositol, in a physiological ratio, reduces the cardiovascular risk by improving the lipid profile in PCOS patients.', Eur Rev Med Pharmacol Sci, 17(4), pp. 537–40.

[9] Zacchè, M.M., Caputo, L., Filippis, S., Zacchè, G., Dindelli, M. and Ferrari, A. (2009) 'Efficacy of myo-inositol in the treatment of cutaneous disorders in young women with polycystic ovary syndrome', Gynecological Endocrinology, 25(8), pp. 508–513.

[10] Zangeneh, F. Z., Jafarabadi, M., Naghizadeh, M. M., Abedinia, N., & Haghollahi, F. (2012). Psychological distress in women with polycystic ovary syndrome from imam khomeini hospital, tehran. Journal of reproduction & infertility, 13(2), 111–115.

[11] Santamaria, et al. (2012) Myo-inositol May Prevent Gestational Diabetes Onset in Overweight Women: A Randomized, Controlled Trial.