Mary Lou Ballweg, President of the Endometriosis Association, delivered the following speech at the Endometriosis Walk For Awareness held in Washington, DC in March, 2000

 

When I listen to the stories of women with endometriosis, at the beginning in 1980, I used to think we’d kind of get to the end of it and then we’d move on and solve the problems.  And still, I am utterly overwhelmed at the stories and how they go on and not just here in North America but around the world.  A while ago the European representative of the Endometriosis Association and I decided that we had to come up with an estimate for how many women there were with endometriosis in the world.  People were asking us all the time.  We really didn’t want to come up with a number because most of these women are undiagnosed so it’s not possible to know if the numbers are really accurate but we came up with the most conservative estimate we could using the most conservative process.  After we came up with the number, we agreed that we could not talk about it because no one would believe us or they would do what some media people do to me which is, they say if there are that many women with it, it must be normal.  They don’t say that about heart disease, they don’t say that about prostate cancer or prostate disease, which effects a huge number of men past a certain age but about endometriosis - then it must be normal.  But today, I felt like it was time for people to think about how huge this problem is because while that number is huge and heartbreaking, it also tells you how much power we have if we will work with it.  The number that we came up with conservatively estimated is 89 million -- 89 million women and girls around the world.  And I invite everyone within range of our voices today to reach out and help heal the pain of those millions.  It’s a monumental task but it’s not as monumental as it was twenty years ago when the Endometriosis Association, the first organization in the world for women with this disease, started and at that time people including women with the disease wouldn’t even talk about it.  Doctors told me, and these are direct quotes, “Ah, a group for women with endometriosis - pretty soon there’ll be a group for people with fallen arches” and another doctor said, “Oh, isn’t that kind of like starting a group for people with halitosis” which is bad breath.  Endometriosis was just dismissed, it was unimportant.  My friends and colleagues were furious at me for throwing away a wonderful career for something they had never heard of.  There was almost no research going on.  I came out here to Washington, which is my second hometown, went to NIH to see what was going on and discovered that virtually nothing was happening.  One fellow whose wife had endometriosis had put out a request for proposals for research and got no proposals.  That was part of what drove us to do our own research.  There was only one medical textbook on the disease at that time, a very small out of date one, and there certainly was no support for women and girls with the disease.  No support groups, no contact networks, no way to even check out if what you were experiencing was part of the disease or not.  So when I think of how far we’ve come in twenty years, it’s almost unbelievable and gives me a lot of hope.  But I also think about what could have been accomplished if this work had started forty or eighty years ago when Dr. Sampson named the disease but that was impossible because of the attitudes about women’s pain.  I find similar attitudes in other countries around the world but reaching out to those women, they can do these kinds of groups.  It’s been very exciting to see in countries where there are no support groups and women have very, very, very poor status that they can do endometriosis groups and do them very well because the need is so great.  

Today, we no longer have a choice but to become active because endometriosis is now an epidemic, and as data that we presented at the 6^th World Congress on Endometriosis clearly showed, endometriosis is starting younger and is more severe and more debilitating in this generation.  I’m talking about the teenagers and those in their young twenties, and I fear what we will be seeing in the next generation.  Sometimes I fear that future generations will not be able to fight endometriosis as well as we can now.  Even now, every week we’re hearing from families whose girls have to drop out of college, who can’t go to high school and have to be home schooled, women who cannot work at all, and women who cannot work to their best potential.  Our cause, our movement is not just about us but about a future of our children, our children’s children, and the world.  This is not a struggle that can be won individually.  We are trying to change attitudes that are thousands of years old, helping millions who as yet don’t even have a name for their pain.  Standing up to the powerful polluters whose pain and death causing chemicals are destroying our world.  This takes a unified, powerful movement.  You and I and hundreds of thousands of others are called to this mission.  I would like everyone here today to vow that you for the rest of your life will be part of stopping this life destroying disease.  We stand here today in front of the Lincoln Memorial, a memorial to a man who helped end slavery for African-Americans, and one of my causes - affirmative action and civil rights that I was devoted to before endometriosis took over my life.  It’s only in recent years that I have come to understand that we are fighting another kind of slavery that is being imposed on us and our children.  Kim mentioned our breakthrough research with dioxin; these chemicals and the disease steal from us the profound joy of womanhood, the ability to live without pain, and the ability to dream of a life without pain for our children.  These life destroying chains are often imposed on us and our children before they’re even born.  Like Theo Colborn, the author of ‘Our Stolen Future,’ a book that all of us need to read, I believe our window of opportunity is not open very wide or very long.  I believe those alive now must act before the damage to our world, ourselves, and our children is irreversible.  Let’s take inspiration from Abraham Lincoln and the thousands of women who worked as abolitionists in the last century to end the slavery of African - Americans.  Let’s take our inspiration today from the beautiful hope alive in us here today and end this new slavery enveloping humans.”

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