PCOS 101- This One Is For Our Cysters!

Key Takeaways:

• PCOS is a very common hormone imbalance disorder affecting that assigned female-at-birth of reproductive age.
• PCOS can cause missed or irregular menstrual periods, issues with ovulation, increased levels of androgens, excess hair growth, skin issues and weight issues. 
• The main treatment for PCOS is symptom management and may depend on whether or not someone is trying to actively become pregnant. 

Being diagnosed with PCOS does not necessarily mean that someone will experience fertility issues, some people may conceive naturally, while others may need assistance with medication and fertility treatments.

What is PCOS?

Polycystic ovary syndrome (PCOS) is one of the most common endocrine disorders, meaning it’s caused by an imbalance of hormones. 

PCOS can cause a whole host of different symptoms, from missed periods to acne, excessive hair growth and even infertility. 

PCOS affects about 1 in 10 people assigned-female-at-birth (AFAB) of reproductive age in the UK. But despite how common it is, many people still don’t get a proper diagnosis until they’re having difficulties trying to get pregnant. Research has shown that it can take on average 2 years and visiting more than 3 doctors to get a PCOS diagnosis… 

Simply, that’s 2 years too long—which is why we’re here to change that (but more about us later). 

Firstly, let’s get to grips with what exactly causes PCOS and what are its main symptoms? 

What causes PCOS?

Although the exact cause of PCOS is unknown, research suggests that a combination of genetic, lifestyle and environmental factors are at play. Here are some of the main factors thought to be responsible for PCOS symptoms:

High levels of Androgens:

Androgens are a group of sex hormones, the most common being testosterone. Produced mostly via the ovaries, androgens are important for muscle growth and getting your libido going. People with PCOS have been found to have higher than normal androgen levels, a condition called ‘“hyperandrogenism”.  

This can result in characteristic PCOS symptoms such as excessive body hair growth, hair loss from the scalp, oily skin and acne. This is because these excess androgens are converted into a more potent form of testosterone, causing excess oil production, hair growth and hair follicle damage. 

High levels of insulin:

PCOS is characterised by higher levels of insulin and insulin resistance. Insulin is a hormone that controls blood glucose levels (basically your blood sugar). When blood glucose levels rise (after eating for example), insulin helps the cells to absorb it so it can be used by the body for energy.

Insulin resistance is when the body doesn’t respond to normal insulin levels. The body starts making excess levels of insulin to compensate for this, leading to misregulation of blood sugar levels and knock-on effects on the proper functioning of the ovaries and ovulation. 

Insulin resistance can also lead to problems with metabolism, causing further symptoms such as weight gain, difficulty losing weight and higher risks of conditions like type 2 diabetes. 

High insulin levels also decrease the production of sex hormone-binding-globulin (SHBG)—an important hormone that regulates testosterone levels—which therefore results in increased levels of testosterone and excess androgen-related symptoms.

Genetic causes:

PCOS has been found to run in families, so having an immediate relative with PCOS can put you at a higher risk of developing it yourself. There have been several genes which have been identified as possible causes of PCOS, but as of yet,  no conclusive links have been made.

Recent research published by members of the Hertility research team shows that PCOS may be associated with genetic changes in the powerhouse of our cells called the mitochondria.

Ethnicity:

PCOS affects people of all ethnic backgrounds, however, research has shown that those from ethnic minority communities, especially those who are Black or South Asian, are at a higher risk of developing PCOS. 

Different ethnicities are also known to have different PCOS symptoms. For example, women of South Asian and Middle Eastern descent are more likely to experience excessive body and facial hair and women of East Asia are more likely to experience irregular periods.

What are the symptoms of PCOS?

We are all unique, so every person affected by PCOS will experience symptoms differently but some common symptoms include the following.

Menstrual cycle-related symptoms:

PCOS can impact ovulation by either causing irregular ovulation or no ovulation at all (anovulation).   This is because people with PCOS tend to have higher levels of a  menstrual cycle hormone called luteinising hormone (LH) relative to another menstrual cycle called follicle-stimulating hormone (FSH).  As these hormones are key for regulating ovulation, an imbalance can cause ovulation to happen less frequently or stop it altogether.

Irregular ovulation will often result in irregular periods (oligomenorrhea). This is when your cycle is less than 21 days, or more than 35 days apart. People with PCOS tend to have very long cycles (i.e. more than 35 days) or no periods at all (amenorrhea).

People with PCOS have also reported experiencing heavier than normal periods.

Hertili-tip!  After tracking your cycles for around three months, if you notice any irregularities we recommend taking a hormone and fertility test to help give you an insight into the inner workings of your cycle. The NHS recommends seeking advice if your cycles occur more often than 21 days or less often than every 35 days, especially if you are trying to conceive.

Skin and Hair related symptoms:

• Excessive hair growth (hirsutism), especially on the upper lip, chin, neck, sideburn area, chest, upper or lower abdomen, upper arm, and inner thigh.
• Loss of hair or thinning of the scalp hair (alopecia).
• Skin issues such as acne on the face and body, thick dark patches of skin in your armpit or around your groin or neck (acanthosis nigricans) and skin tags.  
• Excess hair, hair loss and acne are caused by having too many androgens (such as testosterone) in your body, a common trait in people with PCOS.

Weight gain or difficulty losing weight

Weight gain is particularly seen around the abdomen area (known as central adiposity), which is caused by the effect PCOS has on your metabolism.

Difficulty conceiving

This is due to the hormone imbalances in PCOS causing irregular ovulation, which can make it more difficult to get pregnant.

Mental health-related symptoms

People with PCOS are more likely to experience depression and anxiety as a result of the negative impact their symptoms can have on their day-to-day life.

Is there a test for PCOS diagnosis?

There is no single blood test which can be used by itself to diagnose PCOS. A doctor will have to review your medical history, including information about your periods and other symptoms, carry out blood tests and possibly an additional pelvic ultrasound scan to rule out other causes of your symptoms before confirming a diagnosis. 

How can I be diagnosed with PCOS?

Someone would need to be experiencing at least two of the following to be diagnosed with PCOS: 

• A history of irregular periods (oligomenorrhea) or no periods (amenorrhea).
• Increased androgen levels (hyperandrogenism) (which is determined by lab tests or physical characteristics like excessive body or facial hair).
• Evidence of polycystic ovaries (determined by a pelvic ultrasound scan)

Did you know?

Don’t be fooled by the name, polycystic ovaries do not mean cysts in the ovaries. The imbalance in hormones does not allow follicles ( little sacs that house your eggs)  in the ovaries to mature properly. As a result, there are a large number of immature follicles which get stuck in various stages of maturation, and this is what appears like cysts during a pelvic ultrasound.                     

If you’ve been diagnosed with PCOS and would like to help raise awareness about the struggles in getting a diagnosis and finding adequate support to manage your symptoms, please consider sharing your experience by filling out our research survey. The more data we collect the further we can forward our mission for improving the time to diagnosis and improving care for everyone experiencing PCOS.

How can a Hormone and Fertility test help me?

If you suspect you might have PCOS, our at-home tests can give you a better insight into your hormones.

Via our initial online health assessment, we create a personalised hormone panel specific to you, your health history, biometrics and symptoms. Depending on your answers your personalised test could include menstrual cycle hormones, androgen hormones, thyroid hormones and indicators of ovarian reserve.

Testing for testosterone is important in making a PCOS diagnosis as people with PCOS tend to have higher levels of testosterone. They also tend to have low levels of SHBG which can contribute to high testosterone. 

An imbalance between the levels of two other important hormones, follicle-stimulating hormone (FSH) necessary for the development of the immature follicles and luteinising hormone (LH) necessary to trigger ovulation is also associated with PCOS.  People with PCOS often have LH levels which are higher than the FSH levels. Another hormone we test for is the Anti-Müllerian hormone (AMH) which can give you insight into your ovarian reserve (how many eggs you have left). For someone with PCOS, AMH levels are often found to be higher due to the excess amounts of immature follicles in the ovaries. However, there is still a lot of debate surrounding using AMH as a diagnostic test for PCOS, because there is not enough evidence (yet) to show how effective it is as a marker.

Can PCOS affect my fertility?

PCOS can cause ovulation to become less frequent and unpredictable, which may make it more tricky to conceive. If ovulation doesn’t occur, there will be no egg to fertilise each month.  

Some people may need to explore fertility treatment options, but being diagnosed with PCOS doesn’t necessarily mean that you’ll face issues with your fertility. Many people with PCOS will get pregnant without any fertility treatment. 

More good news is that although someone with PCOS may be more likely to need fertility treatments than someone without, research has shown that they will have a similar number of pregnancies and children. 

What are the long-term health risks of PCOS?

PCOS has been associated with the following long-term health risks:

• Insulin resistance
• Type 2 diabetes 
• Obesity
• High blood cholesterol
• High blood pressure (hypertension)
• Excess fat in the liver
• Cardiovascular disease
• Mental health conditions such as ​​depression and anxiety
• Sleep apn0ea (problems breathing while you’re asleep, which can make you extremely tired during the day)
• Endometrial (womb) cancer 
• Pregnancy-related complications such as miscarriages, preeclampsia (high blood pressure) & gestational diabetes (Diabetes in pregnancy)

How is PCOS treated?

There is no cure for PCOS, which means that treatment for PCOS is focused on the management of symptoms and the long-term health risks. Treatment will depend on a number of factors including your age, how severe your symptoms are if you are planning on having children, your overall health and your risk of long-term health problems.

Management of PCOS usually needs a multidisciplinary approach, which may include an endocrinologist (hormone specialist), gynaecologist, dermatologist, fertility specialist, dietitian or nutritionist, exercise specialist and mental health professional. According to evidence-based guidelines, lifestyle management is important not only to improve symptoms but also to improve the chances of becoming pregnant and having a healthy baby if you are trying to conceive, this includes:

Maintaining a healthy weight 

Ensuring your weight is within a healthy range can increase your chance of spontaneous ovulation and regular periods.

Talking with your GP can help you to determine your ideal goal weight and the steps you can take to achieve it. Doctors often use Body Mass Index (BMI) as a reference to determine your ideal weight (you can check your BMI here). A normal BMI range falls between  18.5 and 25, however, this may be different depending on your activity level and ethnicity.

For someone with a BMI of 30 or over, NICE guidelines state that losing 5-10% of your weight is likely to improve symptoms and increase your chance of conception. According to the NHS, it’s losing as little as 5%.

Eat a healthy balanced diet and regular exercise

Although it’s commonly the first line of advice suggested by medical professionals, weight loss with PCOS is not always easy and can result in yoyo dieting (which does more harm than good) or eating disorders. This is where having a holistic approach is important, which can be achieved by eating a healthy balanced diet and incorporating exercise into your daily routine.

You should tailor your diet to your food preferences and keep it flexible. Avoid an unnecessarily restrictive or nutritionally unbalanced diet and focus on what nutrients you can add rather than overhauling your choices completely.

A Mediterranean-style diet rich in whole grains, high-fibre fruit and vegetables, healthy fats from nuts, seeds and extra virgin olive oil, and good protein sources such as oily fish and lean proteins can help to improve PCOS symptoms.          

You could also consider switching out carbohydrates with a high glycemic index (GI), such as white bread, cakes, pastries, white pasta and white rice (which can easily spike your blood sugar levels), for low GI foods such as some fruit and vegetables, pulses and whole-grain foods such as porridge oats. 

Limit your intake of sugary processed snacks and drinks. Try swapping them for healthier alternatives such as fruits and nuts. Combining protein with carbohydrates can slow the absorption and lessen any blood sugar spike. Think fruit with natural yoghurt or an apple with almond butter.

Reduce stress levels

Excessive stress can negatively impact your overall health and can also cause irregular menstrual cycles. 

PCOS is associated with an increased risk of developing mental health conditions such as ​​depression and anxiety. A new diagnosis or experiencing fertility issues can unknowingly impact your emotional wellbeing, so it’s important to put yourself and your needs first, 

If possible, try to cut down on your stress levels or try self-help measures to cope with stress, such as meditation, exercising and journaling.

Adopting a healthy sleep schedule and planning to get at least eight hours of sleep can also help with stress and mood.

However, if these feelings do not go away or start interfering with your daily life, it’s important to remember that you don’t need to suffer in silence. If you find your self-help measures are not helping you cope, consider seeking advice from a mental health professional as your pathway to support. 

At Hertility, we have a specialised fertility counsellor care pathway that can help you navigate the emotional aspects of your diagnosis and fertility journey.

In some cases, making simple but effective lifestyle changes are enough to help people with PCOS conceive naturally. However, for others, lifestyle modifications might need a little helping hand from modern-day medicines and technology. Some commonly used medicines and supplements  include:

• Hormonal birth control, such as the combined oral contraceptive pill (COCs) might be prescribed to make your menstrual cycle more regular and help improve acne. Some COCs such as Dianette and Clairette contain an ‘anti-androgen’ called co-cyprindiol which can also improve excessive body and facial hair. If someone has fewer than three periods a year, the inner lining of the womb is not regularly shed, which can increase the risk of womb cancer, hormonal contraception may be prescribed to ensure you have regular bleeds and has been found to reduce the risks of developing womb and ovarian cancer. Even though ovulation might be unpredictable in people with PCOS, it can still happen, which is why it’s important to always use a suitable method of contraception to protect yourself and plan your pregnancy at your own pace. 

• Anti-androgen therapy such as Sprinolocatone, Cyproterone Acetate, Flutamide and Finasteride may also be prescribed to block androgens and therefore alleviate symptoms of hyperandrogenism, such as acne and excessive body or facial hair.

• Fertility drugs such as Clomid or Letrozole.  Clomid is one of the most popular brands of clomifene citrate used in the UK – this helps to stimulate the ovaries to release eggs. The treatment is termed ‘ovulation induction’ for those experiencing irregular ovulation due to PCOS and who are looking to have a baby. Read more about the use of Clomid for PCOS here. Letrozole is sometimes used as an alternative to clomid. It generally lowers oestrogen production, which stimulates the beginning of another menstrual cycle. Doctors may use it for treatment in those with PCOS if they think the benefits of treatment outweigh any associated risks.

• Metformin is often prescribed to regulate blood glucose and insulin levels in order to manage insulin resistance.  It is not licensed for treating PCOS in the UK, but of the link association between PCOS and insulin resistance, it can be used “off-label” to help with ovulation induction and symptoms of PCOS. Metformin has also been found to have additional benefits, including weight management, lowering the risk of miscarriage, lowering high cholesterol levels and reducing the risk of heart disease. Read more about the use of metformin for PCOS in the UK here.

• Inositol is a non-prescription dietary supplement that’s often recommended in online PCOS support communities. Although some small studies have shown it might increase the likelihood of ovulation, the evidence is limited and is based on the use of inositol combined with other therapeutic options. There is also evidence that it may improve insulin resistance and its associated symptoms such as weight gain, however, further research is required to fully understand its effect. As the side effects are minimal, clinicians sometimes recommend it for treatment in those with PCOS if they think the benefits of treatment outweigh any associated risks. You should always consult with a doctor before considering any supplements. 

• Vitamin D supplementation has been found to help improve insulin resistance and testosterone levels. PCOS has been linked to an increased risk of vitamin D deficiency, which has been linked to a poorer response to ovarian stimulation during fertility treatment, however, further research is required to understand its role. You should always consult with a doctor before considering any supplements.
  
• Additional fertility treatment: For some who come up against some challenges on their PCOS and fertility journey, in addition to fertility medication, they might also be recommended to undergo fertility treatments such as IUI (intrauterine insemination) where sperm is directly transferred into the uterus using a device called a catheter, or IVF (in vitro fertilisation) that involves taking medication to stimulate the ovaries to produce multiple eggs. These are then retrieved and fertilised in a lab with sperm to form embryos which will be transferred into the uterus in the hope of a resulting pregnancy. You can read more about PCOS and trying to conceive here

• Dermatology referral: If you are looking to manage your skin and hair-related symptoms and have been unsuccessful with your treatment options so far, you may want to request a referral to a dermatologist. Sometimes medications including some types of oral contraceptive pills have been found to improve symptoms. People also use various hair removal methods such as plucking, shaving, threading, creams or laser hair removal. Laser removal of facial hair may be available on the NHS in some parts of the UK.

If you suspect you might have PCOS, our at-home tests can give you a better insight into your hormones. At Hertility we don’t believe in giving you results without the rest, we give you the what’s up, and the what’s next. Our team of experts include PCOS specialists that can help you to manage your symptoms and create an actionable plan for the future.

If you are looking to connect with other people experiencing PCOS, you can check out charities and support groups such as Verity and Cysters

Tags:

#PCOS #ovulation #periodproblems #infertility #fertility #hormones #testosterone #acne 

References: 

Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group. Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome (PCOS). Hum Reprod 2004;19:41–47.

Escobar-Morreale, H. Polycystic ovary syndrome: definition, aetiology, diagnosis and treatment. Nat Rev Endocrinol 14, 270–284 (2018). https://doi.org/10.1038/nrendo.2018.24

https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/[accessed 09/08/2021]

https://www.rcog.org.uk/globalassets/documents/patients/patient-information-leaflets/gynaecology/pi-pcos.pdf [accessed 09/08/2021]