With a huge bump and swollen ankles, anyone would have assumed Beryl Romaine was pregnant.
Indeed, many a kind stranger gave up their seat on a train for her, asking when the baby was due.
But Beryl was not pregnant – far from it, in fact.
Her ‘baby’ was actually a huge growth on her womb that would not only wreck her dreams of marriage and motherhood, but leave her confidence in tatters.
The now 50-year-old was one of millions of women suffering from fibroids – benign or non-cancerous growths in or around the womb.
Scroll down for video
Beryl Romaine’s ‘baby’ was actually a huge growth on her womb that devastated her life. The non-cancerous tumours, called fibroids, affect at least one in three women
Symptoms include heavy menstrual bleeding, pain and the need to urinate frequently.
Around one in three women develop fibroids at some point, most often between the ages of 30 and 50.
And they are thought to develop more frequently in women of African- Caribbean origin.
The exact cause is unknown, but they are linked to the female hormones oestrogen and progesterone, which are at their highest levels during a woman’s reproductive years. (After the menopause, fibroids often shrink and symptoms ease or disappear.)
Lifelike baby dolls designed to deter teenagers from having…
How long do YOU want to live for? One in six people would…
Have YOU lost your libido? Doctors reveal how to spice…
‘No one believes we’re identical twins’: Heartbreaking story…
There is a strong genetic predisposition, says Isaac Manyonda, consultant in obstetrics and gynaecology at St George’s Hospital NHS Trust, South-West London and the Newlife Fertility Centre in Epsom, Surrey.
‘If your mother had them, you are likely to, as well.’
In 50 per cent of women who have them, fibroids do not cause symptoms: they may shrink and disappear without treatment.
However, the other half experience pelvic pain (from the pressure caused by the fibroids) and heavy and/or extended periods.
Both the long and short-term health consequences can be devastating.
Fibroids are benign or non-cancerous growths that occur in or around the womb. Symptoms include heavy menstrual bleeding, pain and the need to urinate frequently
Research has shown that:
- 1 in 4 women with symptomatic fibroids will wait over five years before being diagnosed
- Around 40 per cent of women diagnosed with fibroids have experienced fertility issues
- 75 per cent of sufferers say the condition has a severe impact on their day-to-day life
- 50 per cent of women with fibroids say that their condition makes them depressed
- Heavy menstrual bleeding causes 3.5 million working days in the UK every year
The traditional way of dealing with fibroids is a hysterectomy.
But experts say many women are not being given any other options – such as less-invasive surgery or a new daily pill to manage symptoms – and as a result, are being denied the chance of motherhood.
‘Hysterectomies are in the forefront of doctor’s minds when it comes to fibroids,’ says Dr Nicki On, who founded the support group, the British Fibroid Trust.
‘A survey found nearly 70 per cent of women with fibroids had hysterectomy mentioned to them and 50 per cent were offered one.’
At 32, Beryl was given the devastating news she would need a hysterectomy to remove the fibroid – dashing her dreams of motherhood
It’s a situation Beryl, from Essex, knows only too well following her 15 year nightmare ordeal battling fibroids.
‘I first noticed something was wrong when I felt some lumps in my stomach while having a shower,’ she told MailOnline.
‘They were equivalent to a couple of grapes and didn’t protrude, but they did feel hard.
‘They made my tummy feel constipated and I thought “that can’t be right”.
‘I was a size 12, I was a petite lady. I went to the GP and said “I’m putting on weight around my middle but I don’t think its me getting fat because its hard”.’
Her GP eventually agreed to refer her to a specialist, who diagnosed fibroids.
‘I was shocked – and terrified it meant I had, or would get cancer,’ she recalled.
While the doctor reassured her this wasn’t the case, the news that followed was equally as devastating for Beryl.
‘My doctor said: “I’m sorry madam, but the only option is a hysterectomy”.’
‘At the time I was 32 and engaged to be married. Heartbroken doesn’t even cover it. I thought “I’m only 32, I want to have children”.’
That evening she broke the news to her fiance.
‘He was from Africa, and in his culture children are a must. In the end my confidence was so low that my relationship broke down and I called off my marriage.’
By the time she finally had surgery, Beryl looked heavily pregnant. ‘I was so uncomfortable – I always had swollen ankles due to the weight,’ she told MailOnline. ‘My consultant later said it was like I was pregnant for nine years, not nine months. I would waddle everywhere’
She also became increasingly angry that a hysterectomy was her only option.
‘It’s a woman’s prerogative to have children. Your womb, it’s a woman’s organ, part of that taken away is a whole part of your life and future taken away.
‘I thought “you’ve cancelled your marriage plans, you’ll have your uterus taken off you, what else can life throw at you?”
‘It affected my career, too. I was going to do an MA in journalism, but I thought “you can’t go around the world doing interviews with a big stomach”.
‘So I changed to marketing instead because then I thought I could sit in an office and nobody would see it.’
WHAT ARE FIBROIDS?
Around one in three women develop fibroids — benign growths in or around the womb – most often between the ages of 30 and 50.
They are thought to develop more frequently in women of African- Caribbean origin.
It’s also thought they occur more often in overweight or obese women because being overweight increases the level of oestrogen in the body.
TELL-TALE SIGNS
Heavy or painful periods. In some cases it can lead to anaemia — iron deficiency — causing tiredness, lethargy and shortness of breath.
Abdominal pain. Bloating, discomfort in the stomach, and pain in the lower back and legs.
Frequent urination and constipation, caused by fibroids pressing on internal organs.
Pain or discomfort during sex
britishfibroidtrust.org.uk
Indeed as time went on, Beryl, who now works as a finance and housing contractor, looked more and more pregnant.
‘I’d see friends and they would say “Oh are you having a baby?” I would get very defensive and upset.
‘I didn’t share all of this it, I locked myself up and bore it all alone. I had no one to talk to. ‘
Despite her surgery being scheduled for 2006, she did not attend the appointment.
Instead, she sold her house and used some of the funds to travel to Africa, where 90 per cent of women have fibroids.
‘I spoke to the hospital and they said I could have two years of doing my own research around fibroids so I was sure a hysterectomy was the right choice for me.’
By the time she embarked on her trip, she looked heavily pregnant.
‘I was so uncomfortable- I always had swollen ankles due to the weight.
‘My consultant later said it was like I was pregnant for nine years, not nine months. I would waddle everywhere.’
As well as Africa, Beryl went to Atlanta, Georgia, another area where fibroids are common.
There, doctors suggested she request a myomectomy, where the growths are cut out, sparing the womb.
But back in the UK, surgeons refused – due to the size and location of the fibroids.
‘I was told I had 10cm of them laid over the top of my uterus, like a baby sleeping in the womb. The risk of blood loss was too great.’
Only then did she agree to the radical surgery.
‘I was exhausted – I’d been “pregnant” for nine years and I wanted relief.
‘By that stage I was happy to be alive – I wasn’t worried about children any more.’
Two days later, she held a party to celebrate the start of her new life – where her consultant revealed it was the third largest fibroid she’d seen in her career.
Today, she feels bitter there was so little information around at the time of her diagnosis.
‘My advice to girls with fibroids would be always double check your body. Even if you get an answer from the doctor, get a second opinion.
‘Never leave the surgery unless your questions are answered. No matter how silly, ask questions.
As what your options are, if you don’t understand, ask them to explain again. Tell them to tell you in plain language so you can make the right decision.’
THE NEW PILL THAT COULD SPARE THOUSANDS OF WOMEN SURGERY
A daily pill could spare thousands of women from invasive surgery for fibroids.
Figures show around 40,000 women in England alone seek hospital treatment for the treatment every year.
Current treatment options include major surgery, such as hysterectomy, which can significantly affect a woman’s ability to have children and are costly to the NHS.
Around 20,000 invasive procedures are performed each year as a result, and surgical treatment for the condition cost NHS England £119 million in 2015.
But there are other options that could help some women avoid surgery altogether, experts say.
A daily pill called Esmya has become the first treatment licensed for long-term management of moderate to severe symptoms of fibroids
A daily pill called Esmya has become the first treatment licensed for long-term management of moderate to severe symptoms of fibroids.
And today, the drugs rationing body NICE, the National Institute for Health and Care Excellence, issued updated guidance recommending its use.
The drug works by blocking receptors of the hormone progesterone. This is involved in controlling the growth of the womb lining.
Patients suffering heavy menstrual bleeding and with fibroids 3 cm or more in diameter will be eligible for the treatment.
Clinical data has shown that four courses of Esmya resulted in 73 per cent of eligible patients achieving ‘normal’ (controlled) bleeding, and a 72 per cent reduction in fibroid volume.
‘Esyma has been proven to target fibroids directly,’ said Mr Ertan Saridogan, consultant gynaecologist at University College Hospital and The Portland Hospital.
‘It reduces growth and eases symptoms such as heavy menstrual bleeding and severe pain, therefore improving a woman’s quality of life.’
Dr Sarah Gray of the Primary Care Women’s Health Forum and a GP specialist in Women’s Health, added: ‘Until now we have only been able to remove or shrink fibroids using procedures that require hospital admission.
‘NICE has now affirmed that a medical treatment which requires only the taking of tablets is effective and can be offered to women by experienced doctors.
‘If a woman has fibroid related problems that are affecting her life, she should go to her healthcare provider and discuss what is best for her as surgery is not inevitable.’