Livia McNee had suffered with irregular periods since the age of 14 and, until recently, believed she knew the cause.
The 27-year-old civil servant from London had been diagnosed in 2019 with endometriosis, where uterus tissue grows outside of the womb.
The common condition often leads to painful and heavy periods. In some cases, it can also cause an irregular menstrual cycle.
‘As long as I’ve been getting periods it’s been irregular,’ says Livia. ‘Sometimes, I’d go months without one. Then I’d have them every two weeks. When I was told I had endometriosis, the doctors said this was probably the cause.’
In 2023, Livia underwent surgery to treat her endometriosis. However, while the procedure appeared to improve her pain and lessen her bleeding, her periods remained irregular.
Doctors were at a loss why Livia was still struggling with the issue.
In November 2024, concerned how her irregular periods might affect her ability to have children, Livia decided to undergo a fertility blood test. These tests measure levels of certain hormones linked to fertility.
She was told that her GP surgery could not offer the test, so decided to pay £150 at a private clinic, Hertility Health.
Doctors were at a loss why Livia McNee was getting irregular periods, something she has suffered with since the age of 14
The blood test revealed that certain hormones were markedly raised. These included Livia’s levels of prolactin – a hormone ordinarily linked to breast development and milk production but which can, when elevated, disrupt the menstraul cycle.
Livia was advised to immediately see her GP for further blood tests and scans.
And, after several months of investigations, Livia received a phone call to tell her the cause of her irregular periods: a brain tumour.
‘I found out while at a work party, which is not the best place to do it,’ she says. ‘I cried a lot, and took some time to process.’
Thankfully, Livia’s tumour was neither cancerous nor deadly.
The growth, her doctors explained, was in the pituitary gland, located at the base of the brain, which controls the release of certain crucial hormones.
Research shows that as many as a fifth of people have tumours on this gland. In most cases, the non-cancerous growths will not trigger any symptoms.
However, in some cases, pituitary tumours can cause the gland to overproduce prolactin, leading to irregular periods, low libido, breast milk production and infertility.
After several months of investigations, Livia received a phone call to tell her the cause of her irregular periods: a brain tumour
‘While my tumour is there and causing havoc, I can’t get pregnant,’ says Livia. ‘I’m nowhere near ready for kids but knowing that really affected me’.
Experts say that Livia isn’t alone – other women who suffer with irregular periods may unknowingly have pituitary gland tumours. In some cases, these symptoms could be mistaken for a different condition, like endometriosis, which affects around 1.5 million women in the UK.
Meanwhile, around four million are thought to have a condition called polycystic ovary syndrome, or PCOS, a hormone disorder that can lead to irregular periods, as well as weight gain, acne and excess hair growth.
Problems in the thyroid – a hormone-producing gland in the neck – can also lead to the menstrual issue. So too can stress and anxiety.
Experts say, given the wide number of conditions that cause irregular periods, having a blood test like the one Livia undertook is crucial for finding the cause.
‘If you are a young woman and your period becomes irregular, or stops completely, it’s worth discussing this condition with your GP,’ says Prof Marta Korbonits, an endocrinologist at Queen Mary University of London.
‘There are blood tests that can help diagnose a pituitary tumour.’
‘While my tumour is there and causing havoc, I can’t get pregnant,’ says Livia. ‘I’m nowhere near ready for kids but knowing that really affected me’ she added
Moreover, experts say there are treatments. Research shows that, in some extreme cases, surgery might be needed to remove a pituitary gland tumour.
However, for most women, the condition can be managed using a medication called cabergoline. The tablet, typically taken once or twice a week, is designed to shrink pituitary gland tumours.
It also combats irregular periods and boosts fertility.
But, cabergoline is not without complications.
‘The main side effects are feeling nauseous and I definitely feel that,’ says Livia. ‘I’ve always been a gym-goer, but the side effects mean I can’t do this anymore.’
Earlier this year, a scan revealed that Livia’s tumour had shrunk. She also says her periods had returned to normal.
However, she briefly had to come off the tablets because she began to get swollen breasts – a fairly common side effect of cabergoline.
Livia has just started taking the pills again and says she hopes it should now banish the tumour.
She also urges other women struggling with similar issues to get tested.
‘My symptoms were also symptoms of many other conditions, so it was very hard to tell work out the cause,’ she says. ‘I’d encourage other women to ask their GP for a blood test or, if they won’t, go private like I did.’
