Awareness of the impact of menopause on middle-aged women is at an all-time high – so why are those who go through it in their teens and early 20s still struggling to get diagnosed and treated?
When the doctor began speaking, Jess Moore felt like she was leaving her body as she heard him say something about her egg reserves and early menopause.
Jess Moore felt like she was leaving her body as she heard her GP say something about her egg reserves and early menopause
Jess Moore talks about the lack of professional help when she was diagnosed with early menopause
It was 2008 and the then 15 year old had spent an exhausting day in hospital, undergoing blood tests and ultrasounds, after years of unusual menstrual cycles.
“I remember thinking that if I refused to understand what the doctor was telling me, it wouldn’t be true,” Jess, now 31 and a primary school teacher in London, recalls.
“I thought perhaps then I wouldn’t be going through the menopause at 15.”
In 2023, awareness of the menopause has never been higher, thanks to Davina McCall’s searingly honest documentary about her own experiences, Mariella Frostrup and Alice Smellie writing a book on the subject, as well as high-profile campaigns such as Fabulous’ own Menopause Matters, which has had support from the likes of Penny Lancaster, Carol Vorderman and MP Carolyn Harris.
However, most people still associate the menopause with women in their late-40s and 50s, when there are, in fact, women going through it in their teens and 20s who are struggling to get their voices heard.
“In the UK, one in 100 women go through menopause before the age of 40 – what’s classified as primary ovarian insufficiency (POI), when the ovaries stop functioning as they should before 40 – and roughly one in 1,000 women under 30 are affected by POI,” explains Dr Nighat Arif, GP and author of The Knowledge: Your Guide To Female Health From Menstruation To The Menopause.
“For women who experience this, the physical, psychological and emotional impact is enormous,” she adds.
For Jess, that began at age 12. “I only had three periods, and each was so heavy that I’d wake with blood all over my bed,” she explains.
“Then when they stopped, I was terrified I could be pregnant, despite never having even kissed a boy. My mum Siobhan took me to the GP, but they just prescribed me the Pill to see if that helped.”
It didn’t, and Jess then started to have breakthrough bleeding and horrendous pain, while the list of her symptoms kept growing.
“I was exhausted, I couldn’t concentrate on anything and my mood swings were horrendous. At school, I never let on about my symptoms, but as soon as I got home I’d sleep until dinnertime. I’m amazed my relationship with my older sisters, Laura and Ciera, survived, as I’d argue with them all the time over silly things.”
It took another 2 1/2 years of relentless advocacy from her mum to get Jess an appointment at the Elizabeth Garrett Anderson Wing at University College Hospital in London, which specialises in women’s health.
The fact that Jess suffered for years before getting a diagnosis doesn’t come as a surprise to Amy Bennie.
A psychotherapist and chair of Daisy Network, a charity offering information, advice and support to women under 40 going through the menopause, she’s heard more shocking POI stories than she can count.
“The most difficult thing we find is that the care girls and women get is a total postcode lottery. Some come to us when they’ve been suffering for years, unable to get a diagnosis. Others have a diagnosis, but haven’t been prescribed any medication or support – no one’s offered them HRT, bone scans or follow-up blood tests. It’s awful,” she says.
While some GPs offer amazing care, Amy explains, the level of education on POI is extremely patchy. Dr Louise Newson, a GP and menopause specialist, who created the menopause support Balance app, has seen this first-hand.
“When I was a junior doctor, I was taught that if a woman was young and didn’t have periods, just make sure they’re not pregnant and reassure them,” she recalls. “I saw young women who I didn’t realise were menopausal, because no one had taught me.”
This echoes Dr Arif’s experience.
Throughout her time at medical school in the early Noughties, she recalls there only being one lecture on POI.
“When I was first practising, I came across patients with POI and had no idea myself. The thinking was: ‘Let’s just put them on the Pill so they have a regulated bleed,’” she says.
That was the solution offered to Phoebe Peppiatt, 21, from Hampshire.
She started her periods at 15, and only had three or four a year, something that didn’t concern her GP.
“Finally, at 17, when I was also struggling with acne, my mum Rachel decided I should see a private doctor. They scanned my ovaries and ran some blood tests, told me I was fine and put me on the Pill,” she says. “Suddenly, I was bleeding once a month, which lulled me into a false sense of security.”
At 19, Phoebe stopped the Pill, realised her periods were still irregular, and in August 2021 was back at her GP.
“Thanks to Mum pushing for a referral, I had another scan and some different blood tests that December. Then I tried to put it out of my mind and enjoy my new student life at Edinburgh University,” she says.
But in March 2022, Phoebe received a call that would turn her world upside down.
“A doctor I’d never spoken to before said she was calling with my test results – my hormone levels and egg reserve count were incredibly low,” she recalls.
“Everything became a blur as I heard her say I was going into early menopause and should freeze my eggs. The way she was talking was so mechanical, like she was reading a shopping list. The call lasted three minutes, gave me no specific cause for POI and left me feeling terrified.”
From being a first-year student focused on friends and plans for that weekend, Phoebe was suddenly forced into thinking about her future.
Did she want a child one day? Was it too late?
She says: “It was overwhelming to think about what I might want in a decade, but I didn’t have the luxury of time as a huge ticking clock was now hanging over my head.”
Unsure if the NHS would offer egg freezing and feeling she didn’t have time to waste, Phoebe’s parents paid £7,000 for the procedure privately.
In October 2022, 18 of her eggs were frozen.
“Telling my friends was hard,” she remembers.
“They knew something was up when I kept disappearing off home, but who knows what to say to a 20 year old who reveals they’re going through premature menopause?”
Since starting her periods at 15 Phoebe Peppiatt only had three or four a year, something that didnt concern her GP
Phoebe, now 21, from Hampshire, finally got a diagnosis in 2022 when she was told she had entered premature menopause
Now, with her eggs sitting in the clinic’s freezer, Phoebe – who has not opened up about it to anyone she’s dated – is only just beginning to process the rollercoaster she’s been on.
“The constant travelling and injections, the uncertainty and panic about the future, it’s all impacted my mental health. I’m so grateful that the eggs are there, but everything feels uncertain. When will other menopause symptoms start? Should I be on medication? What does this mean for me, my health and my future?”
Now, 16 years on from her diagnosis, Jess can definitely relate to Phoebe’s experience. “The day I left the hospital at 15, I turned the whirlwind of fear and uncertainty inwards, blaming myself for the fact my body was broken,”she says. “I have never been given a reason for my diagnosis. I felt that I was less of a person and definitely less of a woman. I couldn’t find the words to process it.”
Despite her bi-annual appointments and changing medications – first the Pill and then HRT at 23, when tests found that her rapidly falling oestrogen levels were impacting her bones – Jess was too embarrassed to tell her doctors about her changing symptoms.
“I had vaginal atrophy – inflammation that made sitting for a long time or being intimate with someone extremely painful – but I was too ashamed to mention it to anyone. I convinced myself that if I didn’t admit how my body felt, it wasn’t really happening,” Jess recalls.
That included the hot flushes at work that she hid from colleagues, and the insomnia that was plaguing her.
Through it all was the desire to one day be a mum, and the constant drumbeat of doubt.
Would anyone accept and love her if she couldn’t have a biological child?
“When I was 23, I told a guy I’d been dating for a few months that I was in the menopause and couldn’t have children. I’d practised the words in the mirror for ages. He had no idea how to respond. It was really awkward and the relationship didn’t last.”
It wasn’t until Jess was 25 that something shifted. “It took a decade for me to find the courage to finally ask my doctor what the options were for my fertility. Freezing eggs when I was 15 hadn’t been an option, as I only had a limited amount and the success rate at the time was low,” she says.
“When I told my sisters that my doctor had referred me to a fertility clinic, they instantly offered to help. The consultant said my sisters could donate their eggs and they would freeze them, but the NHS wouldn’t fund it,” Jess explains.
In 2018, their parents paid a total of £10,000 to do this privately.
“My sisters and I have spoken about what it would mean if I used their eggs, and we will all have counselling if I decide to take that step. If any of us have a child, regardless of how, we will all be very involved in their upbringing.”
It was the selfless love of her family that changed things for Jess.
“Despite my guilt at watching them go through this for me, I found the confidence to start sharing my story and raising awareness of POI. I told my colleagues what was happening, and they were amazing, which spurred me on to create my Instagram account @sweaty.forgetful.me,” she says.
The flood of support from women years ahead in their POI journeys and those newly diagnosed and was a revelation.
Dr Arif, who first posted videos about women’s health on social media in 2020, had the same realisation. “I’d dismissed TikTok as a place for silly dances, but the impact of my videos has been incredible,” she says.
“I get messages from hundreds of women who are struggling to be heard around their POI. Among black and Asian communities, the stigma is even greater.”
As for changing the route to better care, Dr Newson is clear – we need to face the misogyny that makes dismissing women’s health so endemic.
“The biggest barrier to diagnosis and treatment is that we don’t listen to women. Instead, we’re told symptoms are in our heads, that we need to sit down, stop whingeing and be quiet.”
For Jess, that means being able to talk about her experience.
“I’m finally on my way to accepting my diagnosis,” she says.
“If I could talk to 15-year-old Jess, I’d tell her that she’s far from alone. And while she may not believe me at that moment, it really will be OK.”
For information and support, visit Daisynetwork.org.
Now, with her eggs sitting in the clinic’s freezer, Phoebe is only just beginning to process her rollercoaster journey
‘The consultant said my sisters could donate their eggs and they would freeze them, but the NHS wouldn’t fund it’ explained Jess Read More