What is POI, and why are we afraid to talk about it?

Forgetfulness, hot flushes and stopped periods—they’re all symptoms of the menopause. But should you be worried if you experience them early on?

The important thing to note is it can happen. It’s called premature ovarian insufficiency—POI—and it’s when you go through menopause before the age of 40.

If you’ve got POI, it means your body isn’t producing eggs, so no oestrogen and progesterone (the two most important hormones for fertility) are released.

Patients also experience high levels of follicle-stimulating hormones (FSH), which control the menstrual cycle and stimulate egg growth. High levels of FSH indicate a decline in functioning ovaries, which suggests a lead up to menopause.

You need hormone replacement therapy (HRT) to correct it but, depending on the patient’s level of hormonal imbalance, this could take years to get right.

Experts reckon POI affects one in 100 women, which is over three per cent of women and girls under 40.

"In most cases, no cause is found, but it can run in families," said Dr Hannah Short, GP specialist in menopause, POI and premenstrual disorders and co-author of The Complete Guide to POI and Early Menopause.

"For others, it can occur as a result of medical or surgical treatment, or it be associated with genetic conditions, infections or autoimmune disorders.

“Unfortunately, there is currently poor support on the NHS due to, one, lack of awareness and, two, lack of access to specialist services and long waiting lists."

Many women are struggling to get a POI diagnosis, because of lack of awareness in health services

Lara Stewart, 25, got diagnosed with POI last September. It took an age to get taken seriously.

"I had been trying to get diagnosed for about five, six years," she says. "And I just wasn’t getting anywhere with it. There was nothing online—I was typing all my symptoms into Google and nothing came up."

Lara knew something was wrong when she started missing her periods. She also noticed unexplained weight-gain, hot flushes and brain fog.

"I went to the doctors, and they were trying to really push for a diagnosis of PCOS [Polycystic Ovary Syndrome]," she continued. "And no matter how many ultrasounds they sent me to, it just wasn’t happening, because I didn’t have any cysts on my ovaries. But nothing else was getting picked up so I felt like I was being strung along."

It was only after paying for private healthcare when Lara finally got her diagnosis: "All they did was look at my previous blood test results, saw my FSH levels were high and found that I’d been through menopause.

"I was just given a leaflet—it was an “on your merry way” kind of thing."

Thousands of women follow charities like the Daisy Network on social media—a space for sharing POI stories, symptoms, risks and treatment plans. It provides a sanction for those who’ve been abandoned in the dark.

Sheree Hargreaves—a 22-year-old student who got diagnosed with POI at 15—is one of them. She wasn’t having a period and her breasts weren’t developing as a teenager, despite her peers going through their menstrual cycles as normal.

It took a year of ultrasounds and CT scans to test for a brain tumour before POI was on the cards.

"There was no specialist treatment," says Sheree, who was passed onto a gynaecologist straight away. “I didn’t even know what any of these words were. I got put on an HRT regime—which I didn’t know was an HRT regime back then—and they just said, 'take these tablets and you’ll be fine.'

"It was all made really clear by the doctors that it was something to not worry about until I was wanting to have children. Which I completely disagree with."

It’s possible to develop osteoporosis, heart disease, dementia and other conditions later in life if you’re not given the right medical treatment, which can take years to perfect.

You may be prescribed HRT to treat your POI symptoms, which can take the form of a gel, tablets or implants

Tara, 34, was lucky enough to have a baby in 2020. But late last year, she received her diagnosis, albeit after insisting to see her own blood test results, which doctors filed as normal.

"I got quite choked because there’s a grieving attachment to it, in terms of fertility," says Tara. "But [the doctor] said, ‘Good news is, you’re not diabetic.’ And I kind of half-laughed and said, ‘Given the option, I’d rather have been.’"

Tara is now on oestrogen patches for the next 15 years, which haven’t yet been medically trialled for those under 30. Women in their twenties and below still receive them as a form of HRT, but it’s not clear whether they’ll have a long-lasting effect.

Other forms of HRT include oestrogen gel, implants, and vaginal oestrogen, but it’s not normally obvious how effective they’ll be until treated with them.

If you spot something that isn’t right, from missed periods to forgetfulness, visit your GP right away. It may not be dismissive.

And remember you can haggle! It could be the best route to an accurate diagnosis.

Read more: Is the pill safe for people approaching menopause?

Read more: Menopause: How to support your partner

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