Pain, Redefined

quotes CORRECT Pain-with-menstruation

“Pain with menstruation is not normal.
Pain with bladder function is not normal.
Pain with bowel function is not normal.
Pain with sexual relations is not normal.
Pain with sitting-standing-moving-breathing is not normal.

Pain with basic biological functions is not normal and deserves to be investigated by a caring physician who believes you.”

– Dr. Camran Nezhat
#EndometriosisAwareness #EndoMarch

Dear President Obama

Dear President Obama:

We would like to thank you very much for supporting the 21ST Century Cures Act and spearheading the Precision Medicine Initiative, policy measures that would surely help usher in a new era of improved health outcomes for our nation’s citizens.

However, we would like to bring to your attention the plight of the 8-10 million American citizens who suffer from endometriosis, a potentially devastating disease which we believe has been left out of these health policy conversations.

Endometriosis is an incurable, estrogen-dependent chronic disease that can potentially cause incapacitating pain, organ damage, infertility, and other severe and sometimes life-threatening medical consequences if inadequately treated. In fact, endometriosis (and adenomyosis) is the third leading cause of gynecologic hospitalization and is the leading cause of the estimated 600,000 hysterectomies performed each year in the U.S.

Although one rarely hears about it in the news, endometriosis is actually common, affecting at least an estimated 1 in 10 women and girls; that’s roughly 8-10 million in the U.S., 200 million worldwide, and about eight times the prevalence of autism. While endometriosis most commonly affects the reproductive system, it can develop on and cause damage to essentially every part of the body, including to the lungs, bladder, bowel, diaphragm, nerves, muscles, kidneys, and blood vessels.

Thanks to the tireless awareness efforts by patients themselves, endometriosis is also finally being recognized as one of the most painful chronic diseases on record, causing pain levels reported to match or exceed those of child birth labor, heart attacks, kidney stones, and appendicitis. And, though theories abound, the cause of endometriosis is still unknown and there is no cure.

Eve’s Curse
There’s also the staggering weight of institutional inertia standing in the way that has made it difficult to uproot the many medical mythologies  about endometriosis that have stood unchallenged for centuries. For example, for thousands of years, endometriosis pain has been accepted as normal. Thus, mothers teach their daughters that it’s normal, and teachers from high school to medical school teach their students that it’s normal. And, because those suffering from this poorly understood disease have been historically stigmatized, many have been too ashamed to speak up about their condition or have been discouraged from seeking medical care.

Urgent Yet Ignored Public Health Issue
As a result of these lingering myths and ancient taboos still making menstruation practically an untouchable topic, endometriosis continues to be one of the most urgent yet ignored public health issues of our time, and those afflicted face unacceptably lengthy diagnostic delays of up to 10 years – or sometimes even longer.  The end result is that millions of women and girls suffer for years with excruciating pain and preventable organ damage before receiving the proper medical care that they need.  By the time those afflicted do receive a proper diagnosis, sometimes it’s simply too late; organs and fertility and lives will have already been severely, and often irreparably, damaged.

The EndoMarch Movement
This is truly a concerning public health issue that needs to be addressed, which is why dozens of endometriosis organizations and support groups from around the world joined together to organize a global awareness initiative – the Worldwide EndoMarch & World Endometriosis Day – which now has over 25,000 supporters across the globe and chapters in 50+ countries and counting.

How You Can Help
We’ve certainly come a long way since the days when endometriosis was referred to as the ‘career woman’s disease’ or ‘Eve’s Curse.’ However, we still could use your help. With gynecologic diseases still steeped in stigma, it’s been an uphill battle to get the issue of endometriosis covered in mainstream news outlets. That’s why we hope you’ll consider championing our cause by including endometriosis in the conversations happening now at the Precision Medicine Initiative summits and 21st Century Cures Act meetings. Women and girls with endometriosis need a cure, non-invasive diagnostic tests, awareness initiatives in public schools, and increased funding for endometriosis research.

Endometriosis Activists of Note
Endometriosis sufferers in particular have been the driving force behind the EndoMarch movement, making great sacrifices to travel long distances to attend the annual EndoMarch events, even though many are often in excruciating pain or just recovering from their third or fifth or tenth surgery.  I cannot think of any group more deserving of your support and we hope you will join us, so that, together, we can be the generation that finally takes a stand against endometriosis.  In so doing, you would become the first President in U.S. history to address one of the most neglected women’s health issues of our time, a change that would indeed finally help deliver 21st Century medicine to the millions who’ve been living in the shadows of silence for far too long.

Thank you very much for taking time to consider our cause.

Very Respectfully,

A Concerned Citizen, Endometriosis Activist & EndoMarch Member
Worldwide EndoMarch | World Endometriosis Day  |