Monthly misery that CAN be treated — if your doctor spots the real cause

The problem is hardly a popular topic of conversation, but Bev Axfordhawkes found that even doctors cringe at the subject of heavy periods.

It meant the cause was missed, leaving her — like thousands of women — suffering needlessly for years.

‘I’ve always had heavy periods, it’s been the bane of my life, but it was never taken seriously,’ says Bev, 46, who works in hospital operating theatres.

‘I was in the air force when I was younger, so we moved around a lot,’ says Bev, from Rochdale, Greater Manchester. ‘I had a new GP every couple of years. They were always old and male, and they just rolled their eyes. It was never investigated.’

From the start of menstruation at ten, Bev’s monthly periods were long, painful and heavy. It was physically debilitating, had a huge impact on her work and social life, and was devastating for her confidence.

‘It’s been a huge source of anxiety and I’ve had so many horrible, embarrassing episodes. every time I booked a holiday, or was invited to a wedding, I’d think, “Oh please, don’t let me be on my period”.’

Bev, who is married with a daughter, 22, and son, 19, tried treatments such as the contraceptive pill and Mirena coil — which releases hormones that help to thin the lining of the womb — but none got the problem sufficiently under control.

DOCTORS had said things would get better once she had children, but although her periods were lighter for a while, they then became worse than ever.

‘I began dreading talking to the doctor about it. I’d try to explain that I had to sleep on towels, but got nowhere. For most of my life, I felt it was part and parcel of being a woman.’

Only now has she learnt the truth behind her problem.

Malcolm Dickson, an obstetrician and gynaecologist at Rochdale Infirmary and a colleague of Bev’s, has been investigating her symptoms and believes she is one of many thousands with heavy menstrual bleeding that is caused by Von Willebrand disease, an inherited condition that impairs the blood’s ability to clot.

carriers either lack Von Willebrand factor — a protein in the blood that helps it to clot — or the factor is present but doesn’t work properly. (It is not haemophilia, which is a more serious bleeding disorder where a different protein is lacking).

Up to 2 per cent of people are thought to have the genetic fault that causes a lack of Von Willebrand factor, but few realise they have it, says Mr Dickson. ‘The majority of men who have it won’t be troubled by it, but because of bleeding complications associated with menstruation and childbirth, women who have it, will.’

he says the disease is often overlooked as a cause of heavy periods, meaning many women miss the right management and treatments.

‘Invariably it raises its head when women reach puberty; they go to their GP who puts them on the contraceptive pill, which is not very effective at controlling bleeding if it’s due to Von Willebrand,’ says Mr Dickson. ‘ They’re then put on another contraceptive pill and so on — they try various things that may improve the situation but never sort it permanently.’

Mr Dickson says up to 30 per cent of women with heavy menstrual bleeding have Von Willebrand disease.

signs that it might be present include very heavy, long painful periods — menstrual ‘flooding’, passing clots and needing to change sanitary products very frequently and at night.

Those affected also typically report a family history of heavy periods; they may also bruise easily or have a tendency for nose bleeds, or have experienced heavy bleeding after a trauma or a procedure such as a dental extraction or tattoo.

Very heavy periods from a young age may also be a clue, says Mr Dickson, as other causes such as fibroids tend to start later in life.

‘The difficulty that sometimes arises is that women are asked, “are your periods normal?” and because their periods are the same as other women in their family, they say yes,’ adds Dr charles Percy, a consultant haematologist at Queen elizabeth hospital in Birmingham.

‘There’s a bit of controversy over what is normal, but generally if they last more than five to six days, a cause like Von Willebrand should be considered.’

Along with heavy periods and their various effects on quality of life, women with Von Willebrand disease are at raised risk of haemorrhage after childbirth or surgery, which can cause lifethreatening levels of blood loss.

As many women with heavy periods end up having a hysterectomy to treat it (around 60,000 a year are performed in the Uk for various reasons), experts say it’s vital that it’s diagnosed so preventive measures can be taken before the procedure.

‘It’s overlooked as a diagnosis,’ says Dr Percy. ‘If we were more aware of it, it would help avoid an unnecessary hysterectomy, or if they did have a procedure, things could be done to prevent bleeding [during it].’

Bev Axford- hawkes only learned Von Willebrand disease was a possibility after suffering serious blood loss following a hysterectomy last April.

she was discharged four days later, but after two days at home was rushed back in agony.

Bev had internal bleeding, and needed emergency surgery to remove a large blood clot in her pelvis; she then spent two days in a high dependency unit.

After her recovery, having spoken to her colleague Malcolm Dickson, she saw her GP who agreed she had all the symptoms of Von Willebrand disease — though nothing would be gained from going through tests now she’s had a hysterectomy.

Today, Bev wishes she had been diagnosed sooner.

‘If I’d known, I would have pushed for a hysterectomy once I’d my children,’ she says.

MR DICKSON believes that if a woman sees her GP about heavy bleeding, she should be considered as having a bleeding disorder such as Von Willebrand, unless proven otherwise.

hysterectomy is the only truly effective solution, he says, but the progesterone- only contraceptive pill controls bleeding better than the combined pill because it is better at thinning the womb lining.

Dr Percy says some women find taking tranexamic acid [ which reduces bleeding by helping to stop blood clots from breaking down] at the start of their period helps reduce bleeding, or a drug called desmopressin may be prescribed.

This raises levels of the Von Willebrand blood protein; if it doesn’t work, or it can’t be tolerated, some patients are given doses of concentrated Von Willebrand factor, from donated blood, via a transfusion.

If a woman with Von Willebrand disease has a baby or an operation, measures can be taken to prevent complications, such as giving tranexamic acid, and delivering the baby under close supervision in hospital.

since her hysterectomy, Bev’s life has improved immeasurably. ‘It is a relief to be able to work, and plan for a night out without worrying about my period.’

Distressingly, her daughter may have it, too. But Bev is determined to ensure she doesn’t suffer the same plight.

‘I waited years to find out what this was — now we know, I hope she won’t face what I did.’