Welsh sisters’ hunt for PCOS answers

Two sisters living with a condition which affects how the ovaries work have said they were left feeling alone and without support as they tried to discover a diagnosis.

Annika Thomas, 39, and Sarah Davies, 44, from Carmarthenshire, experienced symptoms such as irregular periods, infertility and low mood due to polycystic ovary syndrome (PCOS).

Cardiff University research has shown that the condition is becoming more common and suggests that due to the various symptoms, women often need many different appointments, costing the UK an estimated £1.2bn a year.

The Welsh government said its women’s health plan, which includes PCOS, will be announced by the end of the year and it has invested in research.

During PCOS awareness month, Annika and Sarah said they both spent years navigating different appointments before a diagnosis of PCOS.

“It started with my cycles, they were very light, there was a long time in between them,” said Annika.

“Because I am not the typical PCOS patient – what they look for is maybe being overweight, the excess hair… acne – because I wasn’t having those symptoms they weren’t keen on testing. I did push for it.”

“But years and years would go before I felt like I got anywhere because I was chasing up the tests and it took forever.”

Now a mother of three, Annika said she had “tough years” before her first son was born in 2018 through IVF treatment.

“It was such an emotional time,” she said.

“You feel alone. I was never offered support.”

Sarah said there was a lack of joined-up thinking as she attended different appointments for the multiple symptoms of PCOS that she experienced.

“The biggest one [symptom] for me was infertility. But I was always having breakouts, acne, and then another big one for me is weight, always going up and down,” she said.

“Sometimes low mood, especially through hard times like the infertility. PCOS is such a complex condition.”

PCOS is a condition that affects many parts of the body, including metabolism and function of the ovaries.

One of the main symptoms is irregular periods due to the ovaries not regularly releasing eggs, which can lead to problems with fertility.

Symptoms also include excess facial or body hair, acne, hair loss and, in some patients, weight gain.

Long-term, patients may be at an increased risk of depression, anxiety, type 2 diabetes and heart disease.

A Hywel Dda University Health Board spokesperson said it was “always sorry to hear when patients are unhappy with the treatment they have received”.

“We are always striving to improve communications between our departments so that patients are seen by the clinician who can help them best as soon as possible,” they added.

According to the new study at Cardiff University’s School of Medicine, a greater number of people are now being diagnosed.

The team of experts studied over 120,000 patients with PCOS and found that risk was increased among lower socio-economic background patients and those of Asian ethnicity.

Experts concluded that more investment is needed for research and to improve resources to support patients.

Professor of endocrinology Aled Rees said it had a “huge impact” on a patient’s quality of life.

“It can be difficult to diagnose. The irregular periods, absent periods, challenges with weight gain, unwanted hair growth and challenges around fertility,” he said.

“The frustration is that we don’t have a condition-specific treatment, so we need more research.

“There is a little bit more of awareness now but there’s still a gap.”

Victoria Vasey, the director of Women’s Equality Network Wales, said the findings were not surprising.

“What we hear from members is that this is a profoundly difficult, human condition which has enormous physical health impacts,” said Ms Vasey.

“But partly because of misdiagnosis or late diagnosis and symptoms, it also has a huge mental health impact.

“This is a problem which affects a vast number of women, but if we know it affects women in certain groups, then that helps us with solutions.”

A Welsh government spokesperson said all health boards were expected “to take positive action to improve the experiences and outcomes of women and address any inequalities”.

“This year we appointed the first ever clinical lead for women’s health and established a women’s health network which is developing and taking forward the 10-year women’s health plan for Wales,” it added.

“The plan will focus on a range of women’s health issues, including menstrual health and PCOS. The plan is due to be published by the end of 2024.

“We also announced £750,000 into research focused on women’s health priorities to be launched in 2025.”