Call for greater research effort to confront the toll of endometriosis

One of the world’s most prominent advocates for women suffering endometriosis has called for a greater focus on research into the prevention of the disease, which is estimated to affect about six per cent of all women.

HOBART, 10 SEPTEMBER 2007

Speaking at the Fertility Society of Australia annual conference in Hobart, Lone Hummelshoj, Secretary-General of the World Endometriosis Society and Publisher/Editor-in-Chief of Endometriosis.org, said tens of millions of women struggle daily with the symptoms of the disease, yet its cause is unknown, and to date there is no cure.

Endometriosis can rob thousands of girls of healthy teenage years and threaten their fertility.

In the past many young women endured the pain of endometriosis without fully understanding its implications, however diagnosis of the disease is increasing worldwide.

The onset of endometriosis occurs in some girls when they first start to menstruate, causing debilitating pain and fatigue. If not treated, it can over time affect a woman’s reproductive organs and leave her infertile.

“Girls are beginning to menstruate at a much younger age than a generation ago and this means they are at risk of endometriosis,” Ms Hummelshoj said.

“The majority of women who are diagnosed with endometriosis report that they endured the symptoms from their teenage years.

“The disease can only be managed, often by taking the contraceptive pill continuously to suppress menstruation, but it many cases the pain and fatigue associated with endometriosis means young women cannot finish their education and maintain fulfilling careers.

“The cost is enormous, not only from the perspective of personal health and happiness, but also in socio-economic terms through lost productivity in the workplace.

“A world-wide study of 7,025 women with endometriosis has revealed that a significant proportion of sufferers had given up or lost their jobs because of the daily struggles against the disease.

“Then, of course, they face the heart-breaking prospect of not being able to have children

“At the extreme end of treatment, the medication effectively brings on menopause.

“It is a tragedy to consider that some young women with endometriosis have to go through menopause before their mothers.”

Ms Hummelshoj urged doctors, scientists, nurses, counsellors and consumers at the Fertility Society conference to mount an increasing public awareness program about endometriosis.

“We need to ensure people understand this disease, and that they should not suffer in silence like their mothers and grandmothers, bearing in mind that endometriosis has strong genetic links.

“There must be serious investment in research to determine how to prevent endometriosis, and establishment of specialist centres of excellence to improve treatment for those who already have the disease.”

The Fertility Society of Australia conference is being held at the Grand Chancellor Hotel in Hobart. It has brought together world leaders in assisted conception to report on latest developments in infertility, which affects one in six couples.