Page last updated at 01:25 GMT, Sunday, 31 January 2010

'I didn't realise I was at risk from bleeding disorder'

By Jane Elliott
Health reporter, BBC News

Victoria Maxwell
Victoria needed a hysterectomy at 26

As a child Victoria Maxwell bruised badly and had terrible nosebleeds.

But it was when she started her periods that her problems really began.

Each period was heavy and uncomfortable and Victoria felt wretched and embarrassed.

"It became diabolical," said the 62-year-old from Kent.

"I used to haemorrhage most of the month and only have three or four days that I was not bleeding."

Doctors were largely unsympathetic and Victoria was left believing that heavy periods were a burden she would just have to bear.

"I kept on having to go into hospital to have a dilation and curettage (scraping of the lining of the uterus). I had about 10 of those," she said.

"The specialist said I had a womb like a kettle that kept furring up, and that my husband and I should think of having a family before the situation got worse.

"He thought that by the time I was 30 I would have to have a hysterectomy."

In fact Victoria was only 26 when she had the operation, following the birth of her two children.

Doctors said she would need to be in hospital for a matter of days, but her bleeding was so heavy after the operation that she needed to stay there for months.

'Back seat'

Finally, when she was in her forties, doctors diagnosed her with the bleeding disorder von Willebrand's disease, but not without several life-threatening situations along the way.

One of the most common bleeding disorders in women
There are about 5,000 people with von Willebrand's (VWD) identified in the UK, but more may be as yet undiagnosed, since the disorder is believed to affect 1% of the population
There are several types of VWD, all of which are inherited

Dr Bella Madan, consultant haematologist at Guy's and St Thomas' hospitals in London, where Victoria is now treated, said she fears many women are not getting the care they need.

She said that many people wrongly assumed that only men are affected by bleeding disorders and that women tend to be "given a back seat".

Dr Madan added that ignorance could be putting lives at risk.

"But von Willebrand's disease is the commonest bleeding disorder worldwide and it is equally common among men and women, although women tend to be more symptomatic," she said.

"This is because they face the challenges of periods and child birth.

"Victoria nearly lost her life several times but she only has the mild form of the disease."

Life risk

Dr Madan said she believed many women with the disease were going undiagnosed.

"The blood loss, even in mild cases, can be bad enough after operations or severe nosebleeds to warrant blood transfusion. Mild forms of the disease are harder to diagnose than the more severe forms," she said.

"In one severe case a girl died with her second period because the bleeding could not be controlled.

"I have a feeling we are missing a high number of patients whose blood disorder is just being put down to heavy periods. Not only are women having to put up with the misery and embarrassment, but also their lives could be put at risk.

"We want to raise the awareness of bleeding disorders and to change the mindset and thinking."

In an effort to do this, Guy's and St Thomas' hospitals have opened two specialist clinics for women with bleeding disorders and gynaecological and obstetric problems.

Demand has been so great that the gynaecology clinic has this month gone weekly.

Victoria said she certainly felt that initially doctors had not taken her seriously.

"When I was young I used to wonder if I was going mad," she said.

"When I was first diagnosed I was told it was as rare as chicken with teeth. Now it is more known about, but still when I go into A and E I come across doctors who do not know about it.

"There needs to be more publicity.

"My mother thought of it as the curse. She just thought I had heavy periods and when it got too bad she would cart me off for another op.

"Had I met the right specialist, I might not have had a hysterectomy, and my second husband and I could have had a child together maybe.

"It is a huge relief and now if I have an operation I know it does take longer but I am not so frightened."

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