The painful truth about fibroids: why FKA twigs is not alone | Life and style

It was, said the singer FKA twigs, “a fruit bowl of pain every day”. She likened the size of the fibroids – benign tumours that had been removed from her uterus in December – to fruit: two cooking apples, three kiwis and a couple of strawberries. The nurse, she added, “said that the weight and size was like being six months pregnant”. Her experience, the singer said, was “excruciating at times and, to be honest, I started to doubt if my body would ever feel the same again … I know that a lot of women suffer from fibroid tumours and I just wanted to say after my experience that you are amazing warriors and that you are not alone.”

She shared the post on Instagram last week, which was picked up by news organisations around the world – indicating how rare it was for anyone to talk openly about fibroids, even though it is a condition that affects about a third of women at some point in their life.

Fibroids are non-cancerous growths of the uterine muscle that develop in or around the uterus. “It’s unusual for them to be painful,” says Dr Virginia Beckett, a consultant gynaecologist and spokesperson for the Royal College of Obstetricians and Gynaecologists. “Usually, they’re very small and harmless. They can occur either on the outside of the womb, within the muscle wall of the womb or pushing on to the inside of the womb.” Many women will never even know that they have them but, for some, they can cause debilitating pain, bleeding, heavy periods, discomfort during sex and, in some cases, fertility problems.

Their cause is unknown, but thought to be linked to oestrogen levels – women of childbearing age are more likely to develop them and they can shrink in women who have been through the menopause. African-Caribbean women are more likely to suffer from larger fibroids that cause symptoms. There is no known way of cutting your risk, says Beckett. “There are no dietary methods or medications and having your baby early or late makes no difference.”

A recent all-party parliamentary group on women’s health – which also covered the condition endometriosis – found “unacceptable treatment” for women with fibroids. It reported that 42% of women said they were not treated with “dignity and respect” and nearly half were not told about the short- or long-term side effects of treatment. It found that 12% of women took up to two years even to be treated for their fibroids. One woman told the survey she had been told by her gynaecologist that there was only one treatment option. “I was only offered a hysterectomy and only through my own online research did I discover the other options out there. I had to ask for these other treatments,” she said. Another respondent said her symptoms were ignored.

“Far too often, women put up with symptoms and incredible pain because they are not aware of what is ‘normal’ and they feel stigmatised by talking about ‘women’s problems’,” said the report.

Bridgette York, a solicitor who founded the Fibroid Network patient and campaign group, was diagnosed with fibroids when she was in her mid-20s. She says that, at the time, some 20 years ago, women – even young women who hadn’t had children – were being pushed towards unnecessary hysterectomies. “It was very distressing emotionally and people weren’t talking about it,” says York. After doing lots of research, she was treated nine years after the diagnosis with a myomectomy, which removed the fibroids but kept her womb intact. She had four fibroids removed, with one measuring 33cm (13in) across and the largest weighing 5kg (11lb). York recovered well and went on to have twins.

One of her concerns now is the number of women who are offered medication to treat symptoms rather than a cure. Some drugs also act as contraceptives and are often prescribed to women in their 20s and 30s who may not be aware that it may delay their ability to conceive once they come off it. Medication can be useful for some women, but York says there are safety and efficacy concerns. She points to the drug Esmya (ulipristal acetate) – in February, the Medicines & Healthcare Products Regulatory Agency informed medical professionals that it was the subject of a new EU safety review after several women suffered serious liver damage while taking it. The agency ruled that it should not be prescribed to new patients and that liver function should be tested once a month for women already on it.

“We’re concerned that women are not being given all of the options, and not being given informed choice, and that drugs [might not] have as much effect as they think it might do, especially if they have large fibroids,” says York.

The all-party parliamentary report found that 70% of women were told about hysterectomy, with 38% undergoing one. However, in many cases, fibroids can be treated with less extreme surgery, but also non-surgical interventions such as uterine fibroid embolisation, which is carried out by a radiologist who essentially blocks the blood vessels “feeding” the fibroid. Woodruff Walker, a pioneer of uterine fibroid embolisation, says not enough women are being told about the treatment by gynaecologists, either because they are not familiar with it or because it is not something they offer. “For about 25% of patients who come to me, who have fought their way through the system, embolisation is not mentioned by their gynaecologist as an option.” There are also newer treatments involving laser or ultrasound to destroy the fibroid, but the NHS points out that “the long-term benefits and risks are unknown”. “We do have some medical therapies, but they’re not useful for very large fibroids,” says Beckett.

For large fibroids, she explains, “you would probably offer a hysterectomy. You can do open surgery to remove the fibroids and leave the womb, but that can be quite complicated. You can remove smaller ones laparascopically [through a small incision]. You can do minimally invasive techniques to interfere with the blood supply of the fibroid [such as embolisation] and, if they are impinging on the lining of the womb, you can remove them through a camera that goes into the womb through the cervix.” Embolisation “is not extremely widely available and there are some disadvantages to it. You can get quite significant pain afterwards and the data on fertility is not very well established. The data  is much more established with traditional surgical methods,” she says.

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