Caroline Mansi was walking in the woods in spring with her sister when she suddenly felt dizzy and experienced a huge menstrual flow.
“I had to lie down on the forest floor because I was so weak and weak,” recalls Caroline, then 39, deputy headteacher at a primary school in Enfield.
Ten minutes passed before he felt strong enough to stand. They took the quickest route back to the parking lot, where Caroline ran into the public bathroom.
“Looking down, I was soaked in blood,” she recalls. ‘I had also passed a huge clot, 10cm in diameter, in addition to 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 at not getting any answers or advice from the doctors.
Caroline Mansi, 43, didn’t have any obvious signs of fibroids until she was 30.
In fact, this was not the first episode of its kind. Eighteen months earlier, in the summer of 2019, Caroline had started bleeding all day, every day, for no apparent reason. Her GP had prescribed the Mirena device to try to control the bleeding, as it releases hormones that thin the lining of the uterus 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 relieve her periods; This didn’t make much difference either. The GP referred Caroline to a gynecologist but there was a two-year wait due to Covid.
‘It was horrible. I don’t know how I got over it,” recalls Caroline, now 43.
‘I regularly passed large clots, had unbearable cramps and blood flooded my clothes. I had to carry a change of clothes everywhere.’
While teaching, he had to run to the bathroom several times after discovering blood had been spilled on my chair. It was so embarrassing.’
The blood loss also caused her to become anaemic, and despite taking iron pills daily, she felt exhausted. The pressure on his bladder caused him to sometimes leak urine.
When she finally saw a gynecologist, in 2021, she was prescribed norethisterone, which mimics progesterone. This helped control blood loss. An ultrasound revealed the cause: a fibroid, a noncancerous 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 the UK to see a gynaecologist.
“Just knowing the cause was a huge relief,” says Caroline. “I just wish it hadn’t taken so long.”
Although two out of three women of childbearing age have fibroids, many do not know it because they do not have symptoms. Others experience heavy periods; swelling; pelvic pain; bladder pressure; constipation, as well as pain during sexual intercourse.
The condition is very common, although surveys show that general knowledge about it is low.
Another major problem is the long wait in the UK to see a gynecologist. In some European countries, women are visited 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 some doctors ignore heavy periods can contribute to delays in referrals.
This was true for Caroline, who felt “deceived by her GP”, who had told her that changing pads every two hours was normal. Fibroids become more common with age and then shrink after menopause. In Caroline’s case, she had no obvious symptoms until she was 30 years old.
There are different types of fibroids. She had a submucosal fibroid, which grows into the muscular lining and protrudes into the uterus, causing distortion and heavy bleeding. It was this, and not its size, 1.5 cm, that caused the intense bleeding.
Other symptoms of fibroids include chronic swelling and the need to urinate more frequently than usual (as these are similar to ovarian cancer, an ultrasound is necessary to rule it out). Fibroids can also affect a woman’s fertility, as they can distort the shape of her uterus, making conception difficult and increasing the risk of miscarriage.
Some can grow very large. Dr Hlupekile Chipeta, a consultant gynecologist at Leeds Hospital NHS Trust and spokesperson for the Royal College of Obstetricians and Gynaecologists, says she has operated on women with fibroids so large they have grown to the top of the abdomen, making them ” everyday things like bending over or “Tying a belt is uncomfortable.”
“When we talk about fibroids being benign, we underestimate the distress and significant effects they can have, regardless of their size,” she told Good Health.
However, for such a common and potentially debilitating problem, surprisingly little is known about the causes of fibroids. Hormones are thought to play a role, particularly estrogen and progesterone.
Women from certain black or Asian groups seem to be more likely to develop them. Being overweight is also thought to be a factor, possibly due to the greater amount of estrogen produced by body fat. Research also suggests that high blood pressure may play a role.
One review, published in the Journal of the American Medical Association, found that middle-aged women with untreated high blood pressure had a 19 percent increased risk of fibroids. Women with high blood pressure, who controlled it with medication, reduced their risk by 49 percent.
Taking vitamin D can also reduce fibroids in women with vitamin D deficiency, according to a study published in the journal Nutrition in Cancer this year. The Women’s Wellbeing charity is funding two fibroid research projects. Researchers at the University of Edinburgh are studying, among other things, how the hormone progesterone behaves in the uterine lining of women with fibroids.
“This is important since most medications used to treat heavy periods act on the progesterone pathways,” says Dr. Varsha Jain, one of the researchers.
“But if progesterone works differently in women with fibroids, this could explain why the drugs don’t work for a third of women with heavy periods, and these women need to resort to hysterectomy.”
In addition to the combined contraceptive pill, which inhibits 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 that there is less tissue shedding in one period.
Ryeqo, a daily tablet for heavy bleeding caused by moderate to large fibroids, is available on NHS prescription from 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 could otherwise cause hot flashes and affect bone density.
“Although fibroids do not go away, they are likely to remain stable or reduce in size,” says Dr Narendra Pisal, consultant gynecologist at the private gynecology clinic in London.
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 injection.
Another option is radiofrequency embolization, which uses radio waves administered vaginally to cut off the blood supply to the fibroid.
A new treatment, Sonata, a combination of high-intensity ultrasound and radiofrequency energy used to destroy fibroid, was recently approved for use on the NHS in selected centers under local anaesthetic.
Eye 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 “seedling” fibroids are missed and can grow in the future.
In severe cases, women may be recommended to undergo a hysterectomy.
Following her diagnosis, Caroline was treated in November 2022 with Sonata. The procedure lasted just over an hour.
“The bleeding stopped immediately and I didn’t have my next period for nine months,” she says.
“When my periods returned, they were relatively normal and lasted only four to five days.”
Two years after his treatment, he says: ‘I really want to shout it from the rooftops. More women need to know that fibroids may be the cause of their heavy bleeding, and they shouldn’t put up with it.’