For women with endometriosis, motherhood is elusive

by Lone Hummelshoj

Earlier this year, we finished a month dedicated to women and mothers. In the U.S., we celebrated “National Women’s Health Week” and before it Mother’s Day. One study suggested Americans would spend a total of $14.6 billion in May alone to honor our mothers. And we should honor our mothers!

However, for millions of women with endometriosis, motherhood is elusive. In fact, an estimated 7.5 million women in the U.S. — one in 10 — are affected by endometriosis during their reproductive years.

Since endometriosis is one of the biggest causes of infertility, too many women will never experience the joy of motherhood — and for them “Mother’s Day” becomes a day of grieving for the children they never had.

It doesn’t stop there. The chronic pelvic pain that so many women also experience — every single day — is limiting. Unfortunately, all of today’s treatments have some degree of side effects and there is no known cure.

An average diagnostic delay of eight years, coupled with “hit and miss” treatments, has put the estimated cost of endometriosis to society at $22 billion a year. That is higher than the cost of migraine and Crohn’s disease.

Furthermore, that amount does not account for a woman’s personal costs, nor indirect costs such as not being able to go to work or school, or being less productive while there.

Yet there is a lack of funding for research into the underlying mechanisms of the disease — research that could help us find a cure or even well-tolerated long-term treatments.

I worry that mismanagement in endometriosis is costing national healthcare systems billions of dollars unnecessarily. Dollars that could be spent more wisely in developing early and effective treatments — with significant savings down the line. But my concern is not about healthcare systems alone.

I am concerned about the large proportion of women with endometriosis who have to take time off work every month either because of severe symptoms or because of doctors’ appointments and treatment regimes.

I am concerned about the women with endometriosis who report reduced productivity at school and at work because of their painful symptoms.

These circumstances have a profound effect on society, but most certainly also on the women themselves, whose personal cost — both financially and emotionally — is substantial. The effect on relationships, especially when fertility becomes an issue, must not be underestimated either.

For decades I have advocated around the world to get endometriosis and its impact recognized, speaking to legislative leaders and at conferences. Recently, I addressed these issues in New York City at the Endometriosis Foundation of America’s first medical and scientific conference.

The attention at the meeting was great.

But we need a great deal more than medical conferences.

We need to collectively urge our governments to fund research that will significantly enhance awareness, reduce time to diagnosis, improve treatments, and ultimately find a cure for endometriosis.

Otherwise, this devastating illness will continue to rob millions of women of their quality of life during what should be the most active and productive time of their lives — those precious years when they should be finishing their education, commencing a career, building relationships, and having children — something too many will never experience!

I believe we have finally begun the kind of research that is needed to move forward.

As Chief Executive of the World Endometriosis Research Foundation (WERF), I have been working for the past year with 12 centers in 10 countries (including the U.S.) on the first-ever prospective study to assess the hidden costs of endometriosis (direct and indirect) to society and to women with the disease.

The EndoCost study has a goal to identify areas that can be addressed for improvement and subsequent reduction in cost from endometriosis, and we expect to publish our findings during the second half of 2010.

We hope the results will spur national governments to take endometriosis seriously and invest in research to prevent the next generation of women from having to suffer during the prime of their lives the way this generation has!

Lone Hummelshoj is chief executive of the World Endometriosis Research Foundation, secretary general of the World Endometriosis Society, and publisher/editor-in-chief of Endometriosis.org.

Originally published in MedPage Today.  Visit MedPageToday.com for more gynecology news.

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