My Journey as a South Asian Woman With Polycystic Ovary Syndrome (PCOS)

Woman wearing period pants

In this piece we hear from Neelam who was diagnosed with Polycystic Ovary Syndrome (PCOS) at the age of 18, and later founded Cysters as a safe space for people of colour with reproductive health issues. Cysters is a charity that focuses on centring the patient voice in healthcare. They focus on reproductive and mental wellbeing and act as a conduit between the NHS and grassroots communities. 

My Journey as a South Asian Woman with Polycystic Ovary Syndrome (PCOS)

When I started writing this piece, I asked the women in Cysters what condition they thought of first when I said Problem Periods. The most popular answer was Polycystic Ovary Syndrome (PCOS).

What is PCOS?

Polycystic Ovary Syndrome (PCOS) is a hormonal disorder that affects the way ovaries work and is the world’s leading cause for infertility. The main three features of PCOS are:

  1. Irregular periods (ovulation)
  2. High levels of male hormones - known as excess androgens
  3. Enlarged ovaries containing a large number of harmless follicles that are up to 8mm (approximately 0.3 inches) in size. The follicles are underdeveloped sacs in which eggs develop. In PCOS, these sacs are often unable to release an egg, which means ovulation does not take place.

PCOS usually becomes apparent during your late teens or early twenties.

Symptoms can include:

  • Irregular periods or no periods
  • Difficulty getting pregnant as a result of irregular ovulation or failure to ovulate
  • Excessive hair growth – usually on the face, chest, back or buttocks
  • Weight gain
  • Thinning hair and hair loss from the head
  • Oily skin or acne
  • PCOS is also associated with an increased risk of developing health problems in later life, such as type 2 diabetes and high cholesterol levels.

Does it affect many people?

It's difficult to know exactly how many women have PCOS, but it's thought to be very common, affecting about 1 in every 10 women in the UK with more than half of these women not showing any symptoms.

When I started writing this piece on PCOS, I never thought there would still be fear around discussing this condition publicly. All the women I contacted for quotes and their thoughts asked to remain anonymous. Considering that periods are universal, they are still shrouded in mystery. So there’s no surprise that most women don’t realise when their periods are problematic.

In reality, this isn’t new to me, I’ve had PCOS myself since I was 18 and understand the societal perspectives on the condition. PCOS itself is both physically and mentally draining. 

Society places beauty on a pedestal. Beauty is based on European standards; fair skin, light hair, light eyes, slim build. 

For myself and others from racialised backgrounds, we may already feel that we don't meet these standards, never mind also having PCOS! We don't talk about this enough and just how much it affects our lives.

There are several reasons for this, a key one is that many of the symptoms or signs themselves are taboo to talk about:

  1. Weight gain or hair loss: Having PCOS means that you face additional battles that can typically include, weight gain (usually around your middle), hair loss from your head (similar to male pattern baldness) or hair growth that sociatally can be seen as excessive. It’s not easy to measure up to the pedestal that society holds us up against. 
  2. Infertility: The Indian Journal of Endocrinology and Metabolism, states that “Polycystic ovary syndrome (PCOS) is a common diagnosis in women presenting with infertility. All the dimensions of PCOS have not been completely explored. Many studies have tried to characterise the exact presentation of the disease.” 
  3. Psychological impacts: PCOS is a complex condition, exacerbated when societal barriers around the female body hinder conversations that may identify you as different. Not only do you have to deal with the condition itself, but also the psychological distress of re-living the PCOS journey with others. Not going through the typical feminine experience as society expects, is difficult.

If you or someone you love is experiencing similar symptoms then feel free to get in touch with Cysters directly to join their online peer support group to support you on your journey. 

Note: We recognise that there other people experience PCOS who aren't cis women. This piece was written from the lived-experience of Neelam, so have used women throughout.