The largest ever global survey of women with a crippling incurable disease has been published today showing sufferers in the UK face a barrage of misdiagnosis, ignorance and misunderstanding.

More than 7,000 women in 12 countries with endometriosis have taken part in the major poll which also revealed a correct diagnosis takes an average of 11 years from the initial onset of pain.

The findings have been published today to mark the launch of Endometriosis Awareness Week and on the eve of International Women's Day on Wednesday, March 8.

In response to the findings national charity, the National Endometriosis Society, was also handing over a petition and staging a communal scream in London today to call for more research funding and to highlight awareness of the disease.

What causes endometriosis, which may affect as many as 90 million worldwide and 14 million in Europe, remains unclear but cells like the ones in the lining of the womb are found outside it which can create painful inflammation, adhesions and cysts. At present there is no cure.

With around two million British women suffering from the disease, charity chiefs today said one of the most worrying findings is the increasing delay between the onset of pain and a correct diagnosis.

Researchers found diagnosis now takes an average of 11 years, while the time between first consulting a GP and diagnosis is currently eight years.

Two thirds (68%) of women in the UK have been misdiagnosed with conditions such as irritable bowel syndrome and even depression and psychological pain.

Backache, abdominal and leg pain are quoted as the most common symptoms, while 89% experienced pain throughout their monthly cycle, lasting on average 14 days out of every month.

A total of 81% of those polled experienced pain during sex, 67% of those over 40 had discomfort when opening their bowels and 89% of those in the 25 to 40-year-old age group had pain during their periods.

The number of education and work days lost has also reached a level where the cost to industry and commerce is estimated to be as much as €30 billion in the European Union and £3 billion in the UK.

Of those who said they had lost time from their education in the past five years the average was 5.4 days, while 38% have given up, lost or retired from their jobs as a result of the disease.

For those in employment, 80% said they lose an average of 5.7 days a month while 43% admitted being afraid to tell employers about their condition.

Robert Music, chief executive of the National Endometriosis Society, said: "It is bad enough that in 2006 women around the world - and two million in the UK - continue to struggle with a disease for which there is no cure.

"But it is perhaps even more unacceptable that they should still be in the position of dealing with their illness in an environment in which ignorance, a basic lack of understanding and staggering delays in providing a correct diagnosis are sadly the most common experience."

The impact on relationships was also found to be significant in terms of the wider cost to society. Three quarters (73%) of respondents said their illness had interfered with personal relationships either directly with their partner or friends or in their ability to look after children.

A total of 83% said they suffered pain during even the most routine of daily chores such as sleeping, walking or going to the toilet and on a bad day women rated the average intensity of their pain higher than eight out of 10.

In the poll more than a half of the women remain dissatisfied that their condition is under control, with this figure highest among the under 25 age group.

Of the treatments tried, average effectiveness proves to be low, and a half of all women surveyed felt their GP and the medical profession did not take their condition seriously.

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