Fibroids are the forgotten female health condition
When Nelly* puts her Céline bag on the table between us in my clinic, my eye is drawn to her fitted jumper dress. Ordinarily, a bump of that size on a thirty-something woman might have me guessing she’s five months pregnant.
Except she isn’t, and I instantly know – due to the words ‘heavy menstrual periods’ on her referral notes – the likely cause of her swelling abdomen. And yet, from the blank expression – one that I’ve seen countless times among my female patients – it’s clear I’m delivering a diagnosis she has never heard of.
Dr Christine Ekechi is a consultant obstetrician and gynaecologist
Because Nelly isn’t alone in having been kept in the dark about fibroids. These non-cancerous tumours are something I regularly see among my female patients as a consultant obstetrician and gynaecologist. In the UK, they tend to present for the first time in premenopausal women in their late twenties and thirties, and will affect up to 80% by the time they reach the age of 50.
While most women will have no idea that these unwelcome intruders are stealthily growing across their uterus, one in three will suffer from debilitating symptoms, including heavy periods, abdominal pain and severe bloating.
Having specialised in women’s health over the past 20 years, I’ve seen the likes of menopause and endometriosis get their overdue moment in the spotlight, with fibroids
largely ignored.
While the fight to improve women’s healthcare shouldn’t be a competition for attention, over the years I’ve wondered: where is the outrage about a condition that affects so many women? One that costs the UK economy £68m per year in healthcare, lost productivity and years of women living in poorer health?
Thankfully, I’ve observed a shift in recent years. ‘Fibroids’ is now a word you see in headlines, or hear on the radio. I credit this uptick in awareness to a few things: first, the Black Lives Matter movement of 2020 highlighted many systemic inequalities, including
those within our healthcare system – such as the treatment of fibroids, which predominantly affect Black women.
Then there’s the government’s Women’s Health Strategy, which has generated high-profile discussion of the reproductive condition, along with a handful of others. The brutality of living with fibroids has been laid bare by celebrities with the condition speaking about their experiences.
These include singer FKA Twigs, who told Vogue that her ‘confidence as a woman was knocked’ after surgery to remove six fibroid growths; actor Sharon Stone, whose symptoms were so severe that she had two epidurals; and broadcaster Clara Amfo, who developed anaemia due to heavy blood loss.
But what exactly does life with the debilitating condition look like for the millions of other women in the UK with fibroids? Why have their experiences gone unheard for so
long? And what needs to happen for them to find relief?
A swelling issue
These lumps of tissue develop either as single or multiple growths, and are scattered over the outside surface of the uterus, within the muscle wall or in the uterine cavity – like unwanted junk cluttering a garage. They can vary from the size of a pea right up to a melon.
Most will remain small and can be left alone without causing a problem. Other's as in Nelly's case, will enlarge to a visible and problematic degree.
Many with fibroids are confusingly told that their growths are ‘benign’ – but when you have tumours like these growing inside of you, it feels anything but. They can cause the kind of painful, heavy periods that women will tell me have made them bleed through sanitary products and their clothes on to furniture or the floor, having been unable to rush to the toilet.
The blood loss is such that they’ll feel fatigued – sometimes they’ll even collapse. They’ll be offered a seat on the bus as people will mistake a swollen abdomen for a baby, and they experience a host of other upsetting issues, ranging from incontinence to discomfort during sex.
The indignities caused by these horrifying symptoms, as the body responds to an enlarging of the uterus, are endless – and impact all aspects of a woman’s life, from her career to her relationships. ‘I started to fear my time of the month,’ shares Dawn Heels, 41. ‘The flooding, the pain across my lower body, the protruding belly – my face was a mask as I desperately tried to get on with my day.’
The fibroid campaigner and mother first suspected something was amiss at the age of 32, when she experienced stabbing abdominal pains that didn’t go away, but the harrowing six-year battle to find out she had 18 fibroids prompted her to start campaigning for awareness. The sting of fibroids is worsened by the fact that they can wreak havoc
on fertility and cause unexplained pregnancy loss.
When Yasmin* first discovered she had the condition, aged 25, she was told they wouldn’t affect her dreams of motherhood. But when she started unsuccessfully trying to get pregnant with her partner during her late twenties, investigations suggested they may in fact be the issue.
‘By this point they had grown to 8cm, and by the time I’d accessed surgery on the NHS and recovered, I was 34,’ explains the now-39-year-old, who was unable to conceive after five rounds of IVF. ‘I’m devastated.
Not all women with fibroids, even large ones, will have difficulty starting a family. But the fact that many do has flagged another issue. Black women are three to four times more likely to suffer from the condition compared with white women, with the NHS noting
it’s particularly common in those of Afro-Caribbean descent.
A landmark 2021 report by the Human Fertilisation and Embryology Authority on ethnicity diversity in fertility treatment revealed this group are less likely to experience successful fertility treatment (a picture that remains unchanged in its 2023 report). While the reasons are complex, evidence suggests that late diagnosis and lack of treatment for fibroids, in some women, plays a part.
Many Black women tell me that the way their fibroids have been handled is another example of institutionalised racism within the healthcare system – racism that extends to Asian women, who are also more likely than white women to suffer. ‘I’m convinced the lack of research into fibroids is because of their greater prevalence among non-white groups – science and the pharmaceutical world do not care about us,’ insists Aisha*, 48.
Her personal story holds hope: following a decade of heavy periods requiring blood transfusions, she underwent fibroid surgery and fertility treatment and gave birth to two daughters. But her point makes for grim reading; the sentiment of which I – a gynaecologist and a Black woman – empathise with.
The absence of leaders in the worlds of science and drug development, with personal or close-lived experience of the condition – and racial ignorance and racism in medicine – contributes to research ‘black holes’.
This has long been the case for fibroids. Others have differing thoughts on the slow progress. ‘The mechanisms driving fibroid growth aren’t yet fully understood, which hinders the development of treatments that target the underlying disease,’ explains Samin Saeed, a doctor who has held several top jobs at multiple pharmaceutical giants.
‘We do know that there’s a genetic component, and the hormones progesterone and oestrogen also play a significant role – meaning tumours tend to grow during the reproductive years and shrink after menopause. There’s also evidence of an increased risk resulting from chemicals found in certain make-up and hair products, as well as processed foods, stress and being overweight.
In addition, many studies over the years have linked fibroids to vitamin D deficiency – which affects around a third of Black women in the UK.
Speaking out
‘I felt the silence around fibroids,’ says actress Joan Iyiola, who was able to naturally conceive her 13-month-old son following an open myomectomy and the removal of five fibroids. She is now producing and directing a film on the condition, Mango, which charts the journey of a young woman as she balances crippling symptoms with a flourishing career – alongside a deepening sense of isolation.
The psychological impact of fibroids is often hugely underestimated. A 2022 study revealed that many sufferers experience stigma that compels them to hide what they’re going through. They’re embarrassed by their visibly swollen abdomens and by their accidents in public spaces, and feel immense shame at their avoidance of sex or inability to have a child.
It’s a sentiment reflected by the overwhelming response to an episode of the BBC Radio 5 Live show, That Time Of The Month, I appeared on; listeners with the condition or who knew sufferers were so relieved discussion of fibroids was given airtime.
Increased awareness is vital for early detection and stigma reduction; that’s why the work of patient advocates with large social media followings – such as Dawn (@dawn_heels) and Latoya Busumru (@wombbae) – is so valuable.
But it’s ultimately on us as medics to raise awareness for women, who have been conditioned to normalise crippling abdominal pain and heavy bleeding as part of their regular cycle, to seek help.
Seek to treat
With limited understanding of the causes, treatments for fibroids have evolved little over the two decades I’ve been practising.
My biggest frustration is that I’m still hampered by a lack of information, meaning I can’t prevent the development of fibroids or identify early growths that will go on to become problematic – so that my patients can avoid invasive surgical treatments later on, which can come with risks, ranging from haemorrhage to clot formation.
Some tools that doctors like me have in our arsenal include anti- inflammatory drugs such as ibuprofen, mefenamic acid or tranexamic acid to manage pain and heavy bleeding.
Hormonal options include the oral contraceptive pill or an IUD.
There are also minimally invasive procedures to improve symptoms, such as uterine artery embolisation – where the blood supply to fibroids is reduced – and radio frequency ablation that shrinks growths to preserve future fertility.
They can also be removed vaginally, or through keyhole or abdominal surgery, while an open myomectomy is an option for those with very large fibroids or growths situated at the back of the uterus. But that’s if patients can access these options.
NHS waiting lists remain long – gynaecology services remain the worst affected post-pandemic – and the availability of treatments is subject to a postcode lottery.
For some women, the impact of symptoms and pressures of their biological clock mean they feel forced to go down the private route, which can cost thousands of pounds. And the sad reality is that fibroids often regrow – sending women back to square one.
The only way to permanently treat them is with the removal of the uterus via a hysterectomy – an option I see women take, exhausted by years of suffering.
Route forwards
‘There not only needs to be more robust guidance for doctors, but also streamlined treatment options and advice for patients,’ explains Bassel Watter, consultant gynaecologist and associate professor of reproductive medicine at Anglia Ruskin University and University College London.
Meanwhile, scientific developments, such as Northwestern University’s research into the genetic mutations of fibroids, hold promise. And in 2022, it was revealed that the National Institute of Health and Care Excellence (Nice) had approved a new tablet called Ryeqo, which could help ease symptoms, with an estimated 4,500 women eligible for an NHS prescription.
It’s in technological innovations, though, where I’m really seeing hope for the future. These include apps and wearables that allow women to collect data that can help doctors to detect tumours earlier, as well as the rise of telemedicine that allows patients greater access to specialists.
Additionally, AI-powered diagnostic tools can analyse medical images, such as ultrasound and MRI scans, to detect and characterise fibroids.
Two years ago, I operated on a woman called Lucy*. At 40, she had struggled with her fertility for two years, and we removed 10 fibroids during the surgery. Recently, she sent a WhatsApp message to tell me that she’s now the mother of a five-week-old baby girl. Alongside a picture of her newborn daughter, she wrote, ‘I am eternally grateful.’
The message triggered mixed emotions in me – I was happy at this amazing outcome, but it also made me sad. So many women with fibroids are made to feel grateful for receiving standard care, often denied to them for so long.
I want her little girl to grow up in a world where the healthcare system isn’t failing women at this most basic level.
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