Caroline Mansi was on a woodland walk in springtime with her sister when she was suddenly overcome with dizziness and felt a huge rush of menstrual blood.
‘I had to lie down on the forest floor because I was so weak and faint,’ recalls Caroline, then 39, a primary school assistant headmistress in Enfield.
It was ten minutes before she felt strong enough to get to her feet. They took the quickest route back to the car park, where Caroline dashed into the public loo.
‘Looking down, I was soaked in blood,’ she recalls. ‘I’d also passed an enormous clot, with a 10cm diameter, as well as my coil. I had to change all my clothes.’
Caroline went to A&E, where she had blood tests, but then went home after a long wait – frustrated after getting no answers or advice from the doctors.
Caroline Mansi, 43, didn’t have any obvious sign of fibroids until she was in her late-30s
In fact, this wasn’t the first such episode. Eighteen months earlier, in the summer of 2019, Caroline had begun bleeding all day every day for no apparent reason. Her GP had prescribed the Mirena coil to try to control the bleeding, as it releases hormones that thin the womb lining so there is less tissue to shed. It had no effect.
She was also prescribed Provera – a synthetic form of the hormone progesterone, which regulates menstrual bleeding – to lighten her periods; this also made little difference. The GP referred Caroline to a gynaecologist, but there was a two-year wait due to Covid.
‘It was horrific. I don’t know how I got through it,’ recalls Caroline, now 43.
‘I regularly passed large clots, had excruciating cramps and blood flooded my clothes. I had to carry a change of clothes everywhere.’
While teaching, she had to dash to the loo several times ‘after discovering blood had leaked onto my chair. It was so embarrassing’.
The blood loss also caused anaemia and, despite taking daily iron tablets, she felt drained. Pressure on her bladder meant she sometimes leaked urine.
When she finally saw a gynaecologist, in 2021, she was prescribed norethisterone, which mimics progesterone. This helped control the blood loss. An ultrasound scan revealed the cause: a fibroid – a non-cancerous growth of muscle and tissue that develops in and around the womb.
Dr Karolina Afors, a consultant gynaecologist at University College London Hospital and HCA Portland Hospital for Women and Children, says a diagnosis of fibroids is a problem due to the long wait in the UK to see a gynaecologist
‘Simply knowing the cause was a huge relief,’ says Caroline. ‘I just wish it hadn’t taken so long.’
Although two in three women of childbearing age have fibroids, many are unaware because they have no symptoms. Others experience heavy periods; bloating; pelvic pain; bladder pressure; constipation, as well as pain during sex.
The condition is very common yet general awareness of it is low, surveys show.
Another major problem is the long wait in the UK to see a gynaecologist. In some European countries women are seen annually for a scan and check up, according to Dr Karolina Afors, a consultant gynaecologist at University College London Hospital and HCA Portland Hospital for Women and Children.
The fact that heavy periods are disregarded by some doctors can contribute to referral delays.
This was true for Caroline, who felt ‘fobbed off by her GP’, who’d told her changing sanitary towels every two hours was normal. Fibroids become more common with age, then shrink after the menopause. In Caroline’s case she didn’t have obvious symptoms until her late 30s.
There are different types of fibroids. She had a submucosal fibroid, which grows in the muscle lining and protrudes into the womb, causing distortion and heavy bleeding. It was this, rather than its size, 1.5cm, that caused the intense bleeding.
Other fibroid symptoms include chronic bloating and the need to pee more often than usual (as these are similar to those of ovarian cancer, an ultrasound is needed to rule this out). Fibroids may also affect a woman’s fertility as they can distort the shape of her womb, making it harder to conceive and increasing the risk of miscarriage.
Some can grow very large. Dr Hlupekile Chipeta, a consultant gynaecologist at Leeds Hospital NHS Trust and a spokeswoman for the Royal College of Obstetricians and Gynaecologists, says she’s operated on women with fibroids so large they’ve grown into the upper abdomen, making ‘everyday things like bending over or tying a belt uncomfortable’.
‘When we talk about fibroids being benign, it underplays the distress and significant effects they can have, regardless of their size,’ she told Good Health.
Yet for such a common and potentially debilitating problem, surprisingly little is known about the causes of fibroids. Hormones are thought to play a part, particularly oestrogen and progesterone.
Women from certain black or Asian groups seem more likely to develop them. Being overweight is also thought to be a factor, possibly due to the increased amount of oestrogen body fat produces. Research also suggests high blood pressure may play a role.
A review, published in the Journal of the American Medical Association, found middle-aged women with untreated high blood pressure had a 19 per cent greater risk of fibroids. Women with high blood pressure, who controlled it with medication, cut their risk by 49 per cent.
Taking vitamin D can also shrink fibroids in women who are vitamin D deficient, according to a study published in the journal Nutrition in Cancer this year. The charity Wellbeing of Women is funding two research projects on fibroids. Researchers from the University of Edinburgh are looking at, among other things, how the hormone progesterone behaves in the lining of the womb in women with fibroids.
‘This is important as most of the medications in use to treat heavy periods act on the progesterone pathways,’ says Dr Varsha Jain, one of the researchers.
‘But if progesterone functions differently in women with fibroids, this might explain why medications don’t work for a third of women with heavy periods, with these women needing to resort to hysterectomy.’
As well as the combined contraceptive pill that shuts down the hormones involved in fibroid growth, current treatments include tranexamic acid, which blocks the breakdown of blood clots and prevents bleeding, and the Mirena coil, which thins the lining of the uterus so there is less tissue to shed in a period.
Ryeqo, a daily tablet for heavy bleeding caused by moderate to large fibroids, has been available on NHS prescription since 2023.
It acts on the pituitary gland in the brain, preventing the production of progesterone and reducing oestrogen – both involved in fibroid growth. It is also a hormone therapy that compensates for the lack of oestrogen, which may otherwise cause hot flushes and impact on bone density.
‘While the fibroids won’t disappear, they are likely to remain stable or reduce in size,’ says Dr Narendra Pisal, a consultant gynaecologist at the private London Gynaecology Clinic.
In severe cases, women may be offered injections of gonadotropin-releasing hormone agonists to induce temporary menopause. Symptoms usually improve in four to eight weeks. These can be given for up to six months, or up to two years if taken with HRT. Periods return a few weeks after the last jab.
Another option is radio-frequency embolisation, using radio waves delivered vaginally to cut the fibroid’s blood supply.
A new treatment, Sonata – a combination of high-intensity ultrasound and radio frequency energy used to destroy the fibroid – was recently approved for use on the NHS at selected centres under local anaesthetic.
Keyhole and abdominal surgery can be used to remove fibroids, but the risk is scarring which may affect fertility. And with all treatments, fibroids can grow back or ‘seedling’ fibroids are missed and may grow in future.
In severe cases, women may be advised to have a hysterectomy.
Following her diagnosis, Caroline was treated in November 2022 using Sonata. The procedure took just over an hour.
‘The bleeding stopped immediately, and I didn’t get my next period for nine months,’ she says.
‘When my periods did return, they were relatively normal, lasting just four to five days.’
Two years after her treatment she says: ‘I really want to shout from the rooftops about it. More women need to know that fibroids might be the cause of their heavy bleeding – and you don’t have to just put up with it.’
