Spotlight:

• PCOS, which stands for Polycystic Ovary Syndrome, is a condition that affects the hormones and function of the ovaries. Despite the name, it doesn’t present with cysts, rather multiple follicles on the ovaries that can prevent ovulation. 
• PCOS is a really common condition, affecting around one in 8 women in the UK [1], and 19% of our founding community – those who have shared personal details, experiences and clinic reviews that are powering our new approach to fertility treatment.
• Getting a PCOS diagnosis is often difficult – 70% of those with PCOS worldwide [2] are undiagnosed; and it typically takes up to two years and more than three doctors visits to get a diagnosis [3].
• Symptoms of PCOS vary from person to person. The most common symptoms are irregular periods, high levels of androgens (male hormones) which may cause hair, weight and skin issues, and follicles on the ovaries (polycystic ovaries). [4]
• PCOS can impact fertility, though there are treatments available to help manage the condition and support those who would like to conceive.

Welcome to our guide on PCOS. You may be newly diagnosed or perhaps you have been managing your PCOS for years; or you could be one of the 70% of those undiagnosed worldwide [2], still experiencing PCOS symptoms. Wherever you’re at, we’ll meet you there – ready to shed some light on PCOS, to dispel the myths, avoid the tropes and ultimately to help you feel better informed and equipped for your next steps on your fertility path. 

PCOS stands for Polycystic Ovary Syndrome, though it’s a common misconception that this presents as cysts on the ovaries. Everyone with ovaries has fluid-filled sacs, or follicles, which sit on the outside of the ovaries. With PCOS, there are more of these follicles than the average; and in some cases the ovaries themselves are enlarged. Eggs develop within these follicles and, due to the high levels of androgens (male hormones, such as testosterone) which are another common marker of PCOS (more on this below), many eggs don’t reach full maturity so are not released – this lack of ovulation can present as irregular periods and may impact fertility.

The exact cause of PCOS is unknown, though there are thought to be several key contributing factors. These include: 

• High androgens, a group of hormones that include testosterone, which are made mostly by the ovaries. An imbalance of androgen hormones prevents the follicles on the ovaries from maturing fully and releasing an egg. 
• Insulin resistance means that the body doesn’t respond to insulin – a hormone that controls blood glucose (or blood sugar) levels, helping the body to use it as energy. For those with PCOS, when blood glucose rises after eating for example, the body doesn't respond as normal and continues to make more and more insulin to compensate. High insulin decreases the production of sex hormone-binding-globulin (SHGB), a hormone that regulates testosterone. This then fuels the high androgen levels mentioned above. Insulin resistance is also linked to the metabolic issues associated with PCOS (more on that in Symptoms).
• Genetics can also play a role, with links shown between first- and second-degree relatives (eg. your mother, and your grandmother or aunt) who have PCOS.

The symptoms of PCOS vary from person to person, and though it’s thought to affect one in 8 women in the UK [1], around half will have few noticeable symptoms [4]. For others, symptoms might be more evident. 

The most common symptoms include: irregular periods or no periods at all; fertility issues due to irregular or no ovulation; excessive hair growth (hirsutism) on the face and/or body, and hair loss on the head, both due to high androgens; oily skin and/or acne also due to high androgens; weight gain and difficulty losing weight due to insulin resistance affecting metabolism (for those who don’t have this symptom the condition is sometimes called ‘lean PCOS’).

PCOS can affect fertility, as with a lack of or no ovulation, there’s less chance of an egg being fertilised. However many do go on to conceive naturally or with the support of medication and/or fertility treatments. Once pregnant, research shows the rate of live births is similar to those who don’t have PCOS [5]; though the risk of the mother having gestational diabetes, pre-eclampsia and other complications during pregnancy can be higher.

In the UK, a PCOS diagnosis can be a lengthy and frustrating process – the World Health Organisation reports that 70% of those affected by PCOS remain undiagnosed [2] worldwide; and further research [3] shows that it can take on average two years with visits to more than three doctors to get a diagnosis. The path usually starts with a trip to the GP to discuss symptoms, though GPs are not usually experts in PCOS, therefore not best placed to test or help.

The HFEA tells the diagnosis story of Andreia:

“Imagine my surprise when a couple of blood tests and an ultrasound scan led to me being diagnosed with PCOS at the age of 32. Turns out that the premises of “as long as you have a period it’s ok” or “you are still young and this is all normal”, were wrong. They were, in fact, signs of PCOS that were missed…

I think my biggest piece of advice would be to inform yourself. I know this can be a little controversial, especially within the medical profession (believe me, I teach at a medical school), but a patient empowered by information is very important. I wish I had known to understand more about my menstrual cycle, so I could push for at least a scan early on.”

Your GP should refer you to a gynaecologist, who will carry out any scans and blood tests you need. These will include testing for: 

• Anti-mullerian hormone (AMH), which is an indicator of ovarian reserves or egg count in women (learn more about AMH, here)
• Cycle hormones (FSH, E2, LH); levels of follicle-stimulating hormone (FSH), estradiol (E2) and luteinizing hormone (LH) are all involved in regulating the menstrual cycle, and key markers when it comes to initial fertility diagnostics. 
  • FSH triggers the growth and development of eggs ahead of ovulation. 
  • E2 is the form of oestrogen mainly made by the ovaries that helps the function of the reproductive organs.
  • LH triggers ovulation and helps prepare the uterus ready for a fertilised egg to implant.
• Thyroid (TSH, T3, T4); levels of thyroid stimulating hormone (TSH), thyroxine (T4) and triiodothyronine (T3) all play an important role in growth, influencing the body’s basal metabolic rate – the amount of energy your body needs to keep up its basic functions. In fertility diagnostics, this is a key marker that can affect ovulation regulation.

PCOS is then diagnosed if you have two of the following features: a history of irregular or no periods; high androgens, confirmed with blood tests for cycle hormones (as above), or clinical signs like hirsutism or severe acne; polycystic ovaries, usually confirmed with a transvaginal ultrasound scan. [4]

If you find yourself starting fertility treatment without a PCOS diagnosis, don’t worry, it will likely be picked up in your initial testing by the clinic. As part of our Clinic Matcher, we run all of the above tests as standard before connecting you to the right clinic(s) for you – to make the process as easy as possible, and ensure you are fully informed and prepared before you get to your chosen clinic.

PCOS treatment is based on symptoms, age, overall health and personal priorities, i.e. those who are trying to conceive will likely have a different treatment plan to those who aren’t. For example, if you are not trying to conceive, hormonal birth control can be prescribed to help regulate hormones and improve symptoms. 

For everyone, maintaining a healthy weight and controlling blood sugar through diet and exercise is advised, however the insulin resistance and hormone imbalances typical of PCOS can make it very difficult to lose weight. If this is the case, remember that focusing on a healthy lifestyle is just one factor that can help to manage PCOS. It is also recommended to reduce stress where possible – high levels of cortisol, the body’s main stress hormone, can disrupt blood sugar regulation and also increase insulin resistance – although again, this advice sometimes only serves to elevate stress levels. Lifestyle tweaks are always part of a much bigger picture, something to bear in mind.

• Metformin, prescribed to help regulate blood glucose and improve insulin resistance. 
• Clomifene citrate (Clomid is the most common brand in the UK), or Letrozole tablets are usually the next step and can be prescribed alongside Metformin, to help stimulate ovulation. A transvaginal scan is usually done in the first month of taking these drugs to monitor the ovaries and check the dosage is correct; and they are not usually prescribed for longer than six months due to associated health risks.
• Laparoscopic ovarian drilling surgery (LOD) may be recommended if the above drugs are not effective, which involves using laser to remove the tissue on the ovaries producing high androgens.

Inositol supplementation may be recommended – there is evidence that inositol (a type of sugar sometimes referred to as vitamin B8) works in a similar way to Metformin to help improve insulin resistance, ovarian function and reduce androgen levels.[6]

For people with PCOS, IVF is usually the recommended route for fertility treatment (Read more about IVF in our guide, here). Research shows [5] that those with PCOS have very similar IVF success rates to those without PCOS. The key comparison points in the IVF experiences of those with PCOS compared to those without the condition are:

• A higher chance of cycle cancellation after starting ovarian stimulation due to hyperstimulation (more on this below).
• More eggs retrieved.
• A similar rate of fertilisation.
• A similar clinical pregnancy rate per started cycle.
• Overall similar pregnancy and live birth rates.

In the early stages of an IVF cycle, drugs are prescribed to stimulate the ovaries, to maximise the number of eggs available for collection. Those with PCOS are usually recommended a low-dose of these drugs, for a shorter length of time, to avoid over-stimulating ovaries. This course of treatment reduces the risk of OHSS (Severe Ovarian Hyperstimulation Syndrome), a painful build up of fluid in the abdominal area that can occur after ovarian stimulation. People with PCOS are 15% more likely [7] to develop OHSS, compared to those without (2.7%), so a tailored treatment plan at this stage is key.

Egg freezing is also recommended for those with PCOS undergoing IVF. This is because, at the embryo transfer stage of the IVF cycle, research shows higher success rates and lower risk of complications like ectopic pregnancy for frozen embryo transfers than fresh [8].

According to Verity, the UK’s only PCOS charity, 4.25 million people in the UK are living with PCOS. This includes 19% of our founding community – those who have shared personal details, experiences and clinic reviews that are powering our new approach to fertility treatment. You can find the reviews of those with PCOS by searching the tag ‘PCOS’.

Community is at the heart of everything we do, shaping our work and the experiences of others on their fertility path. As one of our community with PCOS kindly shared:

“Insert quote from one of our community with PCOS on treatment / diagnosis / experience in relation to having the condition”

Connecting with each other, whether in person at local groups or online, can be a great way to offer or find support, share experiences and learn more from people who are in a similar position. Find the groups that are right for you on our Communities page.

According to Verity, the UK’s only PCOS charity, 4.25 million people in the UK are living with PCOS. This includes 19% of our founding community – those who have shared personal details, experiences and clinic reviews that are powering our new approach to fertility treatment. You can find the reviews of those with PCOS by searching the tag ‘PCOS’.

Community is at the heart of everything we do, shaping our work and the experiences of others on their fertility path.

Connecting with each other, whether in person at local groups or online, can be a great way to offer or find support, share experiences and learn more from people who are in a similar position. Find the groups that are right for you on our Communities page.