UK
Getting Real About Polycystic Ovary Syndrome (PCOS)
Delayed diagnosis. Misinformation and misunderstanding. Pain and confusion. It seems wild that in the year 2024, Polycystic Ovary Syndrome (PCOS) is still wildly under-diagnosed, under-researched and its patients underserved. With 10% of the population experiencing the condition, that's a whole lot of irregular menstrual cycles.
Our Co-Founder Dr Sarah Welsh saw firsthand during her 10+ year long career in NHS gynaecology the impact PCOS can have on your health and happiness. From irregular periods to weight gain, painful acne and more, it's time we talked openly and honestly about the condition and how to manage it.
What is Polycystic Ovary Syndrome?
Polycystic Ovary Syndrome (often referred to as PCOS or is Polycystic Ovary Syndrome) is a common condition that has three main features.
These features include:
- Irregular or absent periods
- High levels of androgen hormones which can cause an increase in body or facial hair
- Many fluid-filled sacs (follicles) on your ovaries.
You can be diagnosed with polycystic ovary syndrome if you have at least two of these features.
What makes the ovaries ‘polycystic?’
Polycystic ovaries contain many small follicles up to 8mm in size. These follicles are small sacs which eggs develop in, in but are often unable to release the egg, meaning ovulation does not happen.
In the normal menstrual cycle, an ovary releases an egg roughly once every month, with the potential to be fertilised and causing pregnancy. Therefore people with polycystic ovaries may be more likely to have fertility problems if this is the case.
How common is Polycystic Ovary Syndrome?
Around 1 in 10 women in the UK have PCOS, but it may be more as roughly half do not have symptoms and so may not be diagnosed. Therefore, it is likely many more people have PCOS but do not necessarily know they do.
It is the most common endocrine disorder (disease related to the endocrine glands of the body) among women of reproductive years between the ages of 18 and 44.
Despite being such a common condition, many of those who experience it find that the silence around PCOS makes it hard to speak up about their struggles with it. As attitudes towards women's health evolve, we're so heartened to see public figures share their own journeys with the condition, as it can both help people understand their own body and push for a diagnosis. Celebrities who have spoken openly about experiencing PCOS and its complications include Victoria Beckham, Daisy Ridley, Bebe Rexha and Emma Thompson.
What are the symptoms of Polycystic Ovary Syndrome?
The symptoms of PCOS include:
- Irregular or absent periods (called oligomenorrhoea or amenorrhoea).
- Infertility or difficulty getting pregnant.
- Weight gain often around the tummy area.
- Excessive hair growth in places such as your face, abdomen, cheek or buttocks (this is called hirsutism).
- Acne or oily skin.
- Patches of thick, darker, velvety skin (which is called Acanthosis nigricans).
- Thinning hair on your scalp, or even loss of hair (balding).
- Increased risk of developing type 2 diabetes, obesity, heart disease and mood disorders, amongst others.
When will I start seeing the symptoms of Polycystic Ovary Syndrome?
It is likely you won’t have any symptoms of PCOS until you’re in your late teens or early twenties, but it can be later for some.
Why is Polycystic Ovary Syndrome a syndrome?
Polycystic Ovary Syndrome is defined as a syndrome because it is diagnosed by a set of associated symptoms.
How is Polycystic Ovary Syndrome diagnosed?
Not everyone with PCOS has polycystic ovaries, nor does everyone with ovarian cysts have PCOS. An ultrasound scan of the pelvis plays a major role in diagnosing PCOS, but is not the only tool used to diagnose it.
Polycystic ovary syndrome is diagnosed after taking a careful history looking for the symptoms described above, an ultrasound scan looking for small ovarian follicles, and blood tests looking at different hormone levels.
Your doctor will ask you about your menstrual cycle and whether you have tried to get pregnant in the past. They will also ask if you have signs of excessive hair growth or acne, and if any of your family members have PCOS. They will likely examine any signs and symptoms you have and check your weight. They may send you for blood tests to review your hormone levels, and an ultrasound scan to get a closer look at your ovaries.
All of the above will help conclude whether two of the three defining features of PCOS are met, as outlined by what we call the Rotterdam criteria. These are:
- Irregular menstrual periods.
- Higher than normal androgen levels.
- Polycystic ovaries on pelvic ultrasound.
It is important to rule out any other potential medical conditions that cause similar symptoms, including pregnancy, thyroid gland problems, and adrenal gland problems.
What causes Polycystic Ovary Syndrome?
PCOS is caused by a mixture of genetic and environmental factors. The exact cause of PCOS is unknown, but you are at a higher risk of having it if you’re obese and have a family history of someone with the condition.
Can Polycystic Ovary Syndrome be cured?
PCOS has no cure, but there are many treatment options. Many people with Polycystic Ovary Syndrome ask “Is PCOS treatable?” and the answer is yes, there are many ways to manage your symptoms.
How can Polycystic Ovary Syndrome be treated?
Treatment options are dependent on the symptoms you have and may involve lifestyle changes such as weight loss and exercise. Some people are prescribed the hormonal contraceptive pill to help manage their acne or excessive hair growth, or they may use other typical ways to treat acne and remove unwanted hair.
Sometimes your health professional may prescribe metformin, which is a medication often used in diabetes, is used to correct insulin resistance in PCOS.
Will I have fertility issues if I have Polycystic Ovary Syndrome?
PCOS and pregnancy often go hand in hand. If you’re infertile due to lack of ovulation, PCOS is the most common cause. However, having PCOS does not mean you can’t get pregnant, as it’s a very treatable cause of infertility.
How do I manage my fertility and getting pregnant if I have Polycystic Ovary Syndrome?
If you have PCOS and want to get pregnant, you may have no problems and fall pregnant naturally. However, it is also common for people with PCOS to have fertility issues as you may not ovulate regularly. If you do not release an egg each month, which happens in the normal menstrual cycle, there isn't a chance for that egg to be fertilised, as would happen when you fall pregnant naturally.
If you’re having trouble conceiving then see your doctor and they can help manage this and potentially refer you to a fertility clinic for expert treatment.
You may be prescribed metformin and advised to lose weight and exercise regularly to help your chances of falling pregnant.
Medications, such as clomiphene, can be given to help you ovulate (release an egg) and therefore help you conceive.
If the above options do not work or there are any other issues, you may be referred for IVF (In Vitro Fertilisation).
What if I don’t want to get pregnant, but want to regulate my menstrual cycle and have Polycystic Ovary Syndrome?
Your doctor might advise that you take the contraceptive pill if you’re keen to have a regular withdrawal bleed each month. Although there is no medical need to have regular bleeding each month, this can be convenient for some people - or you might just prefer to have a monthly bleed.
Some people are also prescribed the contraceptive pill when they have PCOS to manage their acne.
Will I be overweight if I have Polycystic Ovary Syndrome?
Not necessarily. Around 20% of people diagnosed with PCOS are not overweight, or “lean.” However, roughly 80% of PCOS cases are in those who are obese, and this carries a higher risk of consequences such as, high blood pressure and diabetes.
Why does cause Polycystic Ovary Syndrome weight gain?
PCOS can mean you produce too much insulin (the hormone that regulates blood sugar levels), or the insulin you do produce does not function normally. This is one reason why you may be more likely to gain weight or have difficulty trying to lose weight.
It is also common in people with PCOS to have central obesity, meaning you carry weight around the middle of your body. This can be partly due to the excess androgen hormones, such as testosterone, which have been found to increase fat deposition.
How should I manage my diet and lifestyle if I have Polycystic Ovary Syndrome?
PCOS and diet are closely linked. You can help your PCOS symptoms by managing what you eat, and your diet plan. As many people with PCOS are susceptible to weight gain, especially around the tummy, and type 2 diabetes, it is important to avoid food that can contribute to this. For example, stay clear of sugary foods and drinks, fried foods and processed foods as much as possible.
A diet full of fruit and vegetables, healthy, high-protein foods such as eggs, nuts and fish can help boost weight loss.
In order to reduce your risk of complications of PCOS, exercising regularly is also important.
What causes the growth of facial hair and hair on my back and abdomen?
The high levels of masculine hormones called androgens (known as hyperandrogenism) which can cause male pattern hair growth, including hair growth in places such as the face, chest or back.
These increased level of masculine hormones (hyperandrogenaemia) can also cause other symptoms such as heavy periods and thinning or loss of the hair on your scalp.
Around 75% of women with PCOS have evidence of hyperandrogenemia.
Is Polycystic Ovary Syndrome linked with depression?
Women with PCOS are more eight times more likely to have depression, however the evidence for treatment with anti-depressants in this case is inconclusive.
If you have low mood, or any signs of depression, it’s important you speak with your doctor or seek expert help.
Where can I find support for my Polycystic Ovary Syndrome and speak to other people with PCOS?
PCOS affects over 7 million of us, so know you're not alone. Rest assured, there are many people out there who can relate to how you’re feeling and understand what you’re going through. You can find more advice and support over at the PCOS Awareness Association.
Want more?
- People with PCOS often struggle with unwanted weight gain. Learn why weight loss can significantly decrease PCOS symptoms.
