National charities are stepping up endometriosis awareness campaigns to raise funds for more research

9 MARCH 2005

New figures show that millions of women across Europe are suffering in silence from an under-researched, under-diagnosed, and under-treated disease called endometriosis

Lone Hummelshoj, John Ryan (Head of European Commission Directorate General for Health and Consumer Protection), Diana Wallis MEP, John Bowis OBE MEP, Robert Music.

Two national charities, backed by Diana Wallis MEP, today made a deputation to Strasbourg in a bid to raise funds and awareness in the EU for endometriosis, a painful, chronic disease affecting an estimated 16 million women and girls in the EU alone.

Endometriosis potentially cost an estimated €30 billion annually in lost days at work; in addition to this there are many other costs including the expense of delayed diagnosis, medical and surgical treatments, and IVF.

Robert Music, chief executive of the National Endometriosis Society in the UK and Lone Hummelshoj, founder of the Danish Endometriosis Society (Endometriose Foreningen) today met with MEPs on a cross party basis to highlight the costs – physical, emotional, and financial – of endometriosis. They have urged the EU to invest more funds in endometriosis awareness and research, and ask MEPs to sign a Written Declaration giving the campaign the Parliament’s backing.

Lone Hummelshoj said:

Despite the potential debilitating effect of endometriosis, which can wreck relationships, destroy careers, and have untold impact on quality of life, the disease does not provide a visible handicap and is therefore not well recognised. We know that women lose days at work due to period-related pain – however, this is often “disguised” as other problems, because menstrual pain is still considered a taboo subject.

New survey shows diagnostic delay to be unacceptable

This is confirmed by a new survey published by the Endometriosis All Party Parliamentary Group (EAPPG) to coincide with Endometriosis Awareness Week (7 – 13 March 2005), which demonstrate that much more needs to be done to deal with the effects of this chronic illness.

The research, carried out by the EAPPG among 2,559 women across Europe, shows the average time it takes to make a correct endometriosis diagnosis, when there is a history of the condition, has increased from seven to a staggering nine years.

Of those who responded, 66 per cent were told they had another condition prior to correct diagnosis. Twenty four per cent were diagnosed with irritable bowel syndrome, six per cent with “psychological pain” and three per cent were told they had depression.

The result of women living with symptoms for protracted lengths of time can lead to incorrect treatment and unnecessary impact on their quality of life. There are also serious implications in the work place for those suffering from the illness in which cells like those in the lining of the womb are found elsewhere in the body leading to painful inflammation, adhesions and cysts, and for 30-40% of those afflicted: infertility.

Of those who responded, the average woman in employment lost as much as five working days each month because of her symptoms and many have had to radically adapt their working lives around the condition.

Fourteen per cent have given up work, lost their job or retired due to the illness; 14 per cent had to reduce working hours and almost one in 10 has changed their job. Overall, 80 per cent had lost time at work due to pain in the last five years.

When asked about the impact of endometriosis on other aspects of their lives, the response reveals the extent of the debilitation:

• Eight out of 10 (81 per cent) of women had trouble sleeping
• 79 per cent said it affected their work
• 73 per cent felt it had an impact on their social life and
• over three quarters (77 per cent) said sexual intercourse was either painful or impossible – leading to further stresses within their relationship

Robert Music said:

We have reached a stage where it is simply unacceptable in 2005 that more than 40 per cent of women with endometriosis are too scared to tell their employer and that two thirds are either dissatisfied or very dissatisfied that their condition is not under control.

We must continue to strive towards earlier diagnosis, improved levels of the awareness of symptoms, better information and greater support personally, professionally and medically. By investing in research into endometriosis now, the long term financial gain on national economies will be significant.

Notes to editors

The survey among sufferers of endometriosis involved 2,559 women across Europe who answered a questionnaire either on paper or via the internet between July 2004 and January 2005. The survey is ongoing and data continues to be reviewed for regular updating.