Why it’s so dangerous for doctors to dismiss heavy periods as ‘normal’: They could be a sign of a more serious condition that affects up to two in three women

Caroline Mansi was on a walk in the woods with her sister in the spring 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, an assistant headmistress at a primary school in Enfield.

It took ten minutes before she felt strong enough to get up. They took the quickest route back to the parking lot, where Caroline stormed into the public restroom.

“When I looked down, I was drenched in blood,” she remembers. ‘I had also passed a huge clot, 10cm in diameter, as well as my IUD. I had to change all my clothes.”

Caroline went to A&E, where she had blood tests, but went home after a long wait – frustrated at not getting answers or advice from doctors.

Caroline Mansi, 43, didn’t show obvious signs of fibroids until she was in her late 30s

In fact, this wasn’t the first episode of this nature. Eighteen months earlier, in the summer of 2019, Caroline started bleeding all day for no apparent reason. Her doctor had prescribed the Mirena coil to control the bleeding, because it releases hormones that thin the uterine lining, so that less tissue can be shed. It had no effect.

She was also prescribed Provera – a synthetic form of the hormone progesterone, which regulates menstrual bleeding – to ease her periods; this also made little difference. The GP referred Caroline to a gynaecologist, but due to Covid we had to wait two years.

‘It was terrible. I don’t know how I got through it,” Caroline, now 43, recalls.

‘I regularly developed large clots, had terrible cramps and blood flowed through my clothes. I had to take clean clothes with me everywhere.’

While teaching, she had to run to the bathroom several times “after discovering blood had leaked onto my seat.” It was so embarrassing’.

The blood loss also caused anemia and despite taking iron tablets daily, she felt exhausted. The pressure on her bladder sometimes caused her to leak urine.

When she finally saw a gynecologist in 2021, she was prescribed norethisterone, which mimics progesterone. This helped control the blood loss. An ultrasound revealed the cause: a fibroid – a benign growth of muscle and tissue that develops in and around the uterus.

Dr. Karolina Afors, a consultant gynecologist at University College London Hospital and HCA Portland Hospital for Women and Children, says diagnosing fibroids is a problem because of the long wait in Britain to see a gynecologist

“Just knowing what caused it was a huge relief,” says Caroline. “I wish it hadn’t taken so long.”

Although two in three women of childbearing age have fibroids, many are unaware of it because they have no symptoms. Others experience heavy periods; bloating; pelvic pain; bladder pressure; constipation, as well as pain during sex.

The condition is common, but general awareness of it is low, studies show.

Another major problem is the long wait in Great Britain for a visit to a gynecologist. In some European countries, women are seen annually for a scan and check-up, according to Dr Karolina Afors, a consultant gynecologist at University College London Hospital and HCA Portland Hospital for Women and Children.

The fact that heavy periods are ignored by some doctors may contribute to delays in referral.

This also applied to Caroline, who felt ‘fobbed off by her GP’, who had told her it was normal to change sanitary towels every two hours. Fibroids become more common with age and then shrink after menopause. In Caroline’s case, she didn’t have obvious symptoms until she was in her late 30s.

There are different types of fibroids. She had a submucosal fibroid, which grows in the muscle wall and protrudes into the uterus, causing deformity and heavy bleeding. It was this, and not its size, 1.5 cm, that caused the intense bleeding.

Other symptoms of fibroids include chronic bloating and the need to urinate more often than normal (as these are similar to those of ovarian cancer, an ultrasound is needed to rule this out). Fibroids can also affect a woman’s fertility because they can distort the shape of her uterus, making it more difficult to get pregnant and increasing the risk of miscarriage.

Some can grow very large. Dr. Hlupekile Chipeta, a consultant gynecologist at Leeds Hospital NHS Trust and spokeswoman for the Royal College of Obstetricians and Gynaecologists, says she has operated on women with fibroids so large they have grown in the upper abdomen, causing ‘everyday things like bending over or using a belt’ tying up is uncomfortable’.

“When we talk about the benignity of fibroids, the suffering and significant consequences they can cause, regardless of their size, are underestimated,” she told Good Health.

Yet for such a common and potentially disabling problem, surprisingly little is known about the causes of fibroids. Hormones are believed to play a role, especially estrogen and progesterone.

Women from certain black or Asian groups seem to develop these more often. Being overweight is also thought to be a factor, possibly due to the increased amount of estrogen that body fat produces. Research also suggests that high blood pressure may play a role.

A review published in the Journal of the American Medical Association found that middle-aged women with untreated high blood pressure had a 19 percent greater risk of fibroids. Women with high blood pressure who controlled it with medications reduced their risk by 49 percent.

Taking vitamin D can also shrink fibroids in women with a vitamin D deficiency, according to a study published this year in the journal Nutrition in Cancer. The charity Wellbeing of Women is funding two research projects into fibroids. Researchers from the University of Edinburgh are looking, among other things, at how the hormone progesterone behaves in the uterine lining of women with fibroids.

“This is important because most medications used 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 could explain why drugs don’t work in a third of women with heavy periods, requiring these women to resort to hysterectomy.’

In addition to the combined contraceptive pill, which turns off the hormones involved in the growth of fibroids, 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 that is shed in a given period of time.

Ryeqo, a daily tablet for heavy bleeding caused by moderate to large fibroids, has been available on the NHS by prescription since 2023.

It acts on the pituitary gland in the brain, preventing the production of progesterone and reducing estrogen – both involved in the growth of fibroids. It is also a hormone therapy that compensates for the lack of estrogen, which can otherwise cause hot flashes and affect bone density.

‘Although the fibroids won’t go away, they are likely to remain stable or shrink in size,’ says Dr Narendra Pisal, a consultant gynecologist at the private London Gynecology Clinic.

In severe cases, women may be offered injections of gonadotropin-releasing hormone agonists to induce temporary menopause. Symptoms usually improve within four to eight weeks. These can be given for up to six months, or up to two years if taken with HRT. Menstruations return a few weeks after the last injection.

Another option is radiofrequency embolization, in which radio waves are administered vaginally to interrupt blood flow to the fibroid.

A new treatment, Sonata – a combination of high-intensity ultrasound and radiofrequency energy used to destroy the fibroid – was recently approved for use on the NHS in selected centers under local anaesthetic.

Keyhole and abdominal surgery can be used to remove fibroids, but the risk is scarring that can affect fertility. And with all treatments, fibroids can grow back or miss ‘seedling’ fibroids and allow them to grow in the future.

In severe cases, women may be advised to undergo a hysterectomy.

After her diagnosis, Caroline was treated with Sonata in November 2022. 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 period returned, it was relatively normal and lasted only four to five days.’

Two years after her treatment, she says: ‘I really want to shout it from the rooftops. More women need to know that fibroids can be the cause of their heavy bleeding – and you don’t have to just accept that.’