UK’s ‘silent’ PCOS sufferers: 49% first uncover diagnosis when trying to conceive

A recent study reveals that polycystic ovary syndrome (PCOS) – one of the most common causes of female infertility – is going undiagnosed for many young adults.

Whilst easily treated in most cases, PCOS was the most common obstacle for couples who are trying to conceive – 58% of couples seeking fertility advice have had a diagnosis of PCOS. According to the NHS, about 1 in every 10 women in the UK is affected by the condition.

The study found that there was potential for misinformation online about the condition. Understanding symptoms is key to identifying the syndrome, though when seeking information on PCOS, 54% choose not to seek it from a healthcare professional. 

7% believe they may have PCOS due to certain symptoms, but are yet to be diagnosed. Rather than seeking professional support, many are opening themselves up to potential misinformation:

  • 30% will use online forums 
  • 20% will use Instagram influencers 
  • 18% will seek information from Facebook groups 

The 2021 Fertility Journey study, conducted by fertility supplement provider Fertility Family, surveyed 395 women with PCOS. The study aims to open the conversation on fertility issues for UK couples, revealing the need for more education and trusted medical advice about PCOS, along with reversing perceptions of infertility as a ‘taboo’ subject.

Instead of people being vulnerable to seeking false information online, more conversations must be had on a primary care level about PCOS and its relation to female health and infertility. Neglecting this dialogue will continue to impact women’s understanding of their mental health experiences too, as 40% of teen girls who have the syndrome suffer with PCOS-related depression.

Increased education surrounding PCOS would lead to more being diagnosed, resulting in higher awareness of the risks in later life that the syndrome can lead to. These include type 2 diabetes, depression, high blood pressure, high cholesterol, heart disease and strokes.

What are the symptoms of PCOS?

If you have signs and symptoms of PCOS, they’ll usually become apparent during your late teens or early 20s.
They can include:

  • irregular periods or no periods at all
  • difficulty getting pregnant as a result of irregular ovulation or failure to ovulate
  • excessive hair growth (hirsutism) – usually on the face, chest, back or buttocks
  • weight gain
  • thinning hair and hair loss from the head
  • oily skin or acne
  • depression and mood swings

Himanshu Borase, Fertility Specialist and Consultant Gynaecologist at Hertsfertility says:
“One third of the people who I see at fertility clinics suffer from PCOS and we always try our best to educate and empower them. There is a great need for more understanding of the options available and a more open conversation around fertility”.

How to manage the effects of PCOS from a young age

The key is to identify these symptoms early on and get advice from a specialist and a fertility expert if you are planning to conceive or struggling to conceive. The best way to manage it depends on the severity of the symptoms and the extent to which they affect your quality of life. Where someone might be uncomfortable and another may want to conceive, management for all these will be different. General advice is to lead a healthy lifestyle, maintain a BMI between 19-25 and take regular exercise.

How does PCOS impact an individual’s fertility, and is this easily managed?

One of the reasons that PCOS patients struggle to conceive is that they may not be releasing an egg regularly. Plus, almost 70% of patients with PCOS have a high BMI and this can also impact fertility.

Management of this usually involves a holistic approach where patients or couples are assessed on a case-by-case basis. Treatment options involve simple measures such as: dietary changes, reducing BMI, supplements to reduce insulin resistance, and other special treatments such as ovulation induction (medicine to release the egg and timed intercourse), surgery for ovarian diathermy and IVF. The idea is to help patients conceive spontaneously where possible.”

Fertility Family share the following advice:

“Openly discussing personal issues such as PCOS and infertility can be difficult, but the more we encourage these conversations, the more open women will become about fertility issues and the need for further education. Many women with PCOS will have difficulties getting pregnant, there are actions these women can take to improve their chances such as; lifestyle changes, losing weight where necessary, take a suitable fertility supplement for PCOS, and seek specialist help early. It is also important to remember that fertility problems can be due to male factors, so always consider both partners in all scenarios regarding fertility”.

Where can people seek support for PCOS?

Additional information and advice on PCOS and infertility:

  • Hertsfertility multidisciplinary team patient education leaflet on the long-term effects of PCOS and management advice
  • Verity is a charity that aims to educate, support and empower women with PCOS through encouraging research and improving access to treatment.
  • Wellbeing of Women is a charity that invests in pioneering women’s health research to develop new tests, treatments and cures.
  • HFEA, the government regulator, provides free, clear and impartial information on UK fertility clinics, IVF and other types of fertility treatment, and donation.
  • Fertility Network UK is the number one charity for anyone experiencing fertility problems in the UK. They run a range of local online support groups.