The Adia Blog

Stories about our journey, our members, and useful information about fertility.

PCOS: what does it mean & what can you do?

1 in 10 women will be diagnosed with polycystic ovarian syndrome (PCOS). Although it’s common, it’s a confusing and often poorly explained diagnosis, with lots to consider. We discuss what this means for your fertility, and also your longer term mental and physical health – and what you can do to put yourself in the best position for a healthy pregnancy and later life!

What are polycystic ovaries anyway?

‘Polycystic ovaries’ (or PCO) is simply a way of describing what your ovaries look like on an ultrasound scan. ovaries should have little cysts (collections of fluid – more properly referred to as ‘follicles’) on them – from which eggs are ultimately released – and ovaries appearing ‘polycystic’ just means that, on a spectrum, they have a few more of these little cysts (and are therefore overall usually a little larger) than average.

About one in three women has ovaries that appear polycystic. What your ovaries look like can change over time – so don’t be surprised if one sonographer says they are polycystic and another says they are not. Some contraceptives also make your ovaries look polycystic (this is certainly nothing to worry about).

Confusingly these little cysts (follicles) are different from the cysts that you may have heard about in other contexts (the ones that grow and cause problems (sometimes bursting, or requiring surgery)) – and PCO does not increase your risk of having one of these big cysts.

What is polycystic ovarian syndrome?

This is where it gets a little complicated.

Most women who have polycystic ovaries do not have polycystic ovarian syndrome (PCOS).

However, the appearance of PCO on scan has been associated with hormonal imbalance, in which there is relatively more of the hormone testosterone (this is generally thought of as the male hormone, but actually women need some of it too – just not too much), and a lack of response to insulin (the hormone that deals with sugar in the blood – and a lack of it can cause diabetes) – which overall can lead to a combination of symptoms.

It is the combination of the symptoms which results in a diagnosis of PCOS.– A group of experts got together a few years ago to agree some criteria for a PCOS diagnosis. These are called the ‘Rotterdam criteria’ and they require someone to have at least two out of three of the following:

  • Polycystic ovaries on scan
  • Infrequent or absent ovulation – which usually means irregular periods (if you are not on the pill)
  • Signs of high testosterone, or high levels of testosterone on blood tests

So, confusingly, this means that you can be diagnosed with PCOS even if you don’t have polycystic ovaries!!

Although the diagnosis above is quite strict – i.e. you have it or you don’t, the truth is that everyone is on a spectrum, and someone developing or prone to the condition may only have one of the symptoms – and may still benefit from the same advice. And, of people who do officially have PCOS, there is a range from people who hardly notice it, to those who find it affects almost every area of their lives.

It often runs in families – so women with the condition will often report their mother or sisters having similar symptoms, or a family history of diabetes.

What’s the big deal with it anyway?

Lots of women have the condition and it doesn’t cause them any problems at all.

However, these are some ways that it can be an issue throughout a woman’s life:

1. Acne and excess hair

Having too much testosterone can give you bad skin or excess hair growth on your body or face (doctors call this ‘hirsutism’).

A healthy diet is likely to improve your skin. You may wish to consider permanent forms of hair removal such as laser.  You can see your GP for prescribed treatments: medicated cream for spots, or one particular type of contraceptive pill may be particularly helpful (called co-cyprindrol (Dianette©))

2. Menstrual irregularity and infertility

As we explained above, one of the features of PCOS is not ovulating (releasing eggs from the ovary) regularly. Since ovulation dictates when your period will come (usually 14 days later) – if you don’t ovulate, you won’t have a monthly cycle.

Ovulation is also obviously necessary to become pregnant. If you are not ovulating regularly, then it may take longer to get pregnant, and harder to time when to have sex to maximise your chances of conception.

We discuss what can be done to help achieve a pregnancy below.

3. Future risk of diabetes and cardiovascular disease

Women with PCOS are more likely to develop diabetes in later life, and have double the risk of diabetes of pregnancy. This is why it’s important to make good lifestyle choices early on – as keeping a normal weight significantly reduces this risk.

Some units will advise that all women with a past diagnosis of PCOS have a test called a ‘glucose tolerance test’ in pregnancy (usually at about 6 months) to check for diabetes.

It has also been shown that women with PCOS are more at risk of cardiovascular disease (including heart attacks and strokes) – so need to keep a close eye on their lifestyle, weight and blood pressure to reduce this risk.

4. Thickening of the womb lining

In lots of scenarios, not having regular periods is not a problem. However, in PCOS, the trouble can be that the lining of the womb (the endometrium) may be thickening under the influence of high levels of the hormone oestrogen, but, because of a lack of regular ovulation, is not being shed. This can be an issue because a very thick endometrium is more prone to develop abnormalities in its cells, which can, if untreated, lead to endometrial cancer in later life.

For this reason, women with PCOS and infrequent periods are advised to take medication (usually progesterone) to induce a bleed at least four times each year. Alternatively, women who do not wish to get pregnant might consider the intra-uterine system (IUS) called the Mirena coil © – which is a contraceptive device that is inserted into the womb, and releases a regular dose of progesterone to prevent the endometrial lining thickening.

5. Mood symptoms

Having PCOS seems to be associated with a higher risk of anxiety and depression. Some of this may be a reaction to the symptoms themselves, which can be understandably upsetting.

Research has shown that mindfulness and meditation are helpful for low mood and anxiety. Adia has a daily meditation and relaxation programme that you can try. Regular exercise has also been shown to be helpful.

I am having irregular periods and I want to get pregnant. What do I do?

You should see your GP or gynaecologist and have a chat about what the cause of irregular periods could be.

Other causes of irregular periods can be things like thyroid issues, low body weight or stress – and these need to be diagnosed and treated accordingly. They may also suggest an ultrasound scan or some blood tests to confirm a suspected diagnosis of PCOS.

If you have PCOS, then the most important thing is to maintain a healthy lifestyle. Weight loss is always the first recommended treatment in those who are overweight: it will often result in a regular menstrual cycle, and regardless will prepare you for a healthier pregnancy.

Other than this, if time is on your side, you are still having periods most months, and you’re happy to accept that it may take a few more months to get pregnant, then there’s no reason to do anything. In fact, I have lost count of the number of friends who thought they’d better start trying earlier than they might have done ‘because they have PCOS’ and have been surprised to conceive immediately! However, if your periods are very infrequent, or you are above the age of 35, then you might want to consider discussing it further with your GP – and consider referral to fertility services – sooner than the standard recommendation (of one or two years of trying).

Fertility services (once they have done a thorough check to confirm that this is the only reason why you are not conceiving – i.e. a check of your womb and fallopian tubes, and also your partner’s sperm count) can prescribe medication to help you ovulate regularly (usually something called clomiphene). You can only be on this for a limited amount of time, and you need to have regular checks to make sure it is working and you are on the right dose. It does increase your risk of a twin pregnancy.

If this doesn’t work, sometimes a procedure called ‘laparoscopic ovarian drilling’ is considered – in which a keyhole procedure is performed while you are asleep, and small holes are made in the ovary (it’s not known exactly how or why this works – but there is good evidence for it!). IVF may also be appropriate.

Why am I only having irregular periods now I have stopped the pill?

It is important to remember that the period you have on the combined oral contraceptive pill is not a ‘real’ period – it is simply your body responding to a pill free week.

Many women start the contraceptive pill as a teenager to manage irregular periods, and then come off it when they are ready to start a family to find they still have irregular periods. The pill itself has not caused any problems – it’s just been hiding a natural irregularity for many years.

Being on the pill itself does not cause menstrual irregularities when you come off it, or influence your chances of getting pregnant in the future.

Does PCOS cause weight gain?

There is some thought (though limited evidence) that the condition itself causes weight gain – but weight gain definitely exacerbates the symptoms and the risks associated – so it can be a tricky vicious cycle to find yourself in.

Keeping your weight within a normal range (BMI 19-25), with a healthy diet and regular exercise regimen (at least 30 minutes, 3 times a week), is the most important way to manage the condition and all its potential complications. Weight loss has been shown to not only improve fertility, but also psychological symptoms, and future risks of diabetes and cardiovascular disease.

What should I be eating if I might have, or be prone to, PCOS?

Our nutritionist, Katie Darymple:

Women with PCOS are known to have higher than normal insulin levels. One way to lower insulin levels is to change and modify your diet.

Insulin is produced by our pancreas in response to the glucose in our blood which comes from the sugar in our diet. The low glycaemic index (GI) diet helps to control blood glucose levels, as foods with a low GI do not cause spikes or high levels of blood glucose. The sugars from low GI foods are released slowly into our blood and therefore do not result in high levels on insulin.

Low GI foods include wholegrains which are high in fibre, such as oats and wholegrain pastas and breads. Beans, nuts and pulses are also low GI foods.

If you are considering a low-GI diet focus on:

  • Eating 3-4 different vegetables per day
  • Switching white bread, pasta and rice for wholegrain alternatives
  • Incorporate beans and pulses into your meals
  • Stay away from processed or refined foods which are high in sugars, such as crisps, sweets and chips.

Further help and support

You may find the following website and support group helpful: www.verity-pcos.org.uk

You can check your BMI here:

www.nhs.uk/Tools/Pages/Healthyweightcalculator.aspx

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