Women living with polycystic ovarian syndrome (PCOS) face prolonged delays in diagnosis and limited access to treatment, according to a report by a parliamentary group.
More than a third of women with the condition had to wait longer than four years for a PCOS diagnosis, according to the report, and after diagnosis almost two-fifths (38%) of respondents were not provided with any resources.
PCOS is a common condition that affects about one in eight women of childbearing age in the UK. The main features of the condition include irregular periods; excess of the hormone androgen, which is linked to excess facial or body hair; and polycystic ovaries, which are when the ovaries are enlarged and contain many fluid-filled sacs.
Published by the all-party parliamentary group on PCOS, the report consists of oral evidence sessions, a survey of more than 2,000 patients on their experiences, as well as freedom of information requests to all 42 Integrated Care Boards (ICBs) in England.
The survey also revealed that only 3% of patients with the condition felt supported by healthcare providers, with almost a third (28%) feeling dismissed or not taken seriously.
“PCOS affects one in eight women and those assigned female at birth, yet for too long it has been sidelined in policy, overlooked in funding, and misunderstood in practice,” said Michelle Welsh, Labour MP for Sherwood Forest and chair of the APPG on PCOS. “This report sets out a clear and urgent case for reform. If we are serious about improving women’s health, we must act now to break the cycle,” she said.
Stark inequalities were also highlighted by the report, with women from Black and Asian backgrounds being up to 2.5 times more likely to be diagnosed with the condition, and those from ethnic minority backgrounds more likely to present with more severe symptoms such as insulin resistance.
Dr Itunu Johnson-Sogbetun, GP and founder of the Royal College of GPs’ Women’s Health Special Interest Group, said the report reflected “what many of us with PCOS already know from lived experience: care is fragmented, diagnosis is delayed, and long-term risks are too often ignored.”
She said: “PCOS is a multisystem condition, yet the NHS frequently treats it narrowly as a fertility or gynaecological issue. The report rightly highlights the postcode lottery of care, the lack of national pathways, and the absence of coordinated support for the metabolic, cardiovascular, and psychological complications that come with PCOS.”
The study also highlighted that the absence of Nice primary care guidance for PCOS had created a postcode lottery for patients, with variations in care across regions of the UK. And as a result, diagnosis often depends on individual clinician judgment, which can result in inconsistent and uncertain care.
Rachel Morman, chair of the PCOS charity Verity, said: “While this inquiry is about PCOS, it really is a barometer for how we value and prioritise women’s health across the entire system.
For a condition affecting millions across the UK, with a significant cost burden to the NHS when not managed proactively in integrated care settings, this level of neglect is unacceptable. We welcome the report and its recommendations, and stand ready to work with the government to deliver the change that is so urgently needed.”
A Department of Health and Social Care spokesperson said: “Women suffering with gynaecological conditions, including polycystic ovary syndrome (PCOS), have been failed for far too long.
“That’s why we are turning the commitments in the Women’s Health Strategy into tangible action, already delivering 4.9 million extra appointments, tackling gynaecology waiting lists using the private sector, improving training for doctors on women’s health, and updating guidance to improve the treatment and management of PCOS.”
