Victims, survivors and loved ones with Endometriosis

Endometriosis is a painful reproductive and immunological disease in which tissue similar to uterine lining (known as the endometrium) migrates outside the womb and implants in other areas of the body.

Unlike normal endometrium, these implants have no way of leaving the body and result in potentially crippling pain, scar tissue and adhesions, infertility and pregnancy loss, bleeding, inflammation, formation of cysts, and even blockage of nearby organs.

The disease, for which there is no absolute cure, affects nearly 10 million women and girls in the United States alone and another 70 million globally. Endometriosis is a leading cause of female infertility, chronic pelvic pain, immunologic disruption, and pelvic surgery in the United States. In addition, the disease accounts for more than half of the 600,000 hysterectomies performed in the U.S annually.

Often stigmatized and minimized as “killer cramps,” symptoms include painful periods, pelvic pain at any point in a woman or girl's cycle, infertility, pain with sexual activity, gastrointestinal and urinary tract difficulties, and more. The disease can even implant in areas like lungs, diaphragm, and beyond – and in some cases, even the brain. Research has shown an elevated risk of certain cancers, autoimmune, and other disorders in those with Endometriosis, as well as malignant changes within the disease itself. Researchers remain unsure as to the definitive cause of Endometriosis (which can only be diagnosed through surgery), though recent studies indicate genetics, immune dysfunction and exposure to environmental toxicants as potential contributing factors.

In addition to the devastating physical and emotional impact the disease can have on women and teens, it is an extremely costly illness. The economic impact alone is staggering: indeed, researchers estimate that menstrual pain is responsible for nearly 600 million lost work hours and a staggering $2 billion in lost productivity each year. In addition, the cost of surgery required to diagnose the disease in each patient adds greatly to the financial burden for both consumers and companies alike.

Yet, despite being one of the most highly prevalent and costly diseases of our time, Endometriosis continues to be mistakenly treated as an insignificant, obscure ailment. Awareness is largely lacking among the lay and medical communities alike. Research also continues to remain significantly under-funded and is largely directed at the infertility aspect, rather than the disease itself. For instance, in fiscal year 2000, the National Institutes of Health planned to spend $16.5 billion on research. Of that funding, only $2.7 million was earmarked for Endometriosis - amounting to approximately 40 cents per patient. This is in stark contrast to other illnesses such as Alzheimer's Disease and Lupus, which received approximately $105 and $30 per patient, respectively.

The ERC maintains that Endometriosis is far more than just “painful periods.” It remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of pelvic pain in women and teens in America and beyond our Country’s borders. The disease knows no racial or socioeconomic barriers, and affects women ranging from adolescence to post-menopause. It can be so painful as to render a patient unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Even today, data has shown that the average delay in diagnosis remains an astounding 9 years, and a patient will seek the counsel of 5 or more physicians before her pain is addressed. It is not unusual for the patient to undergo repeated surgeries and embark on different medical therapies in an attempt to treat the illness; many carrying significantly negative side effects and none offering long-term relief.

Research continues to grow even more ominous. In addition to the elevated risks of other health concerns (including certain malignancies, Thyroid disease, Rheumatoid Arthritis, Lupus, Fibromyalgia, Multiple Sclerosis, chronic migraines, Interstitial Cystitis and more) associated with Endometriosis, we now know as well that the disease may have an even bigger impact on America’s youth than was previously recognized: for example, in those under 22 years of age, the rate of recurrence was double that of older women (35% versus 19%), and studies have revealed that the disease behaves differently in those younger patients, leading researchers to conclude it may be a different form of – and perhaps more insidious - Endometriosis altogether.

The ERC has worked for years with concerned legislators and policymakers around the country to establish Resolutions and Proclamations formally recognizing the need for disease awareness throughout society. To that end, we were the first to work with United States Congress to establish the country's first-ever National resolution, H. Con. Res. 291.

Introduced on behalf of the ERC by Congressman Howard “Buck” McKeon and supported by numerous co-sponsors, H. Con. Res. 291 unanimously passed the floor and formally proclaimed “March as National Endometriosis Awareness Month” for the first time in our country’s history, expressing “the sense of the United States Congress that it strongly supports the ERC's efforts to raise public awareness of Endometriosis throughout the medical and lay communities and recognizes the need for better support of patients with Endometriosis, the need for physicians to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure." Since that time, New York, New Mexico, Colorado, Florida, Michigan, California, Wyoming, Utah and Pennsylvania are among others at the state level that have passed Resolutions with the ERC officially recognizing the Month of March as "Endometriosis Awareness Month" as well.

We hope we can now count on the support of the USPS for the same validation at raising National awareness about Endometriosis through the creation of a beautiful stamp paying tribute to the lives of all the women and girls in the United States – and their loved ones – who are struggling with this disease every day.

Whereas Endometriosis is a leading cause of infertility, chronic pain, immunologic disruption and pelvic surgery in the United States, we the undersigned respectfully request the Citizens’ Stamp Advisory Committee to approve an Endometriosis Stamp honoring the estimated 10 million American women and girls suffering from this insidious, as-yet incurable illness.

This petition is consistent with public opinion and represents a broad National interest, and features a highly relevant subject affecting the American female public, their loved ones, and the health professionals who strive to treat them. Coinciding with the ERC’s ongoing “Endometriosis Awareness Month” campaign, it is our further hope that such a stamp may be unveiled to the American public in the month of March.

The Endometriosis Research Center, a volunteer based 501(c)3 tax-exempt, tax-deductible foundation, wholly supports this interest and cause, and freely gives our Internationally recognized symbol, the “Endometriosis Awareness Angels,” created and donated to the ERC by artist Christine Marlow, to this effort as a representative mark of this important and crucial campaign.

By signing this petition I demonstrate my support of the ERC’s efforts to campaign for creation of an Endometriosis stamp and express my willingness to allow the ERC to use my name and any subsequent information provided by me in furtherance of their mission to secure a United States Postal Service Stamp honoring the lives of the millions of American women and girls struggling with this disease and to bring about widespread National awareness which will hopefully lead to better recognition of Endometriosis, more effective treatments, and ultimately – one day – a cure.

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The Stamp Out Endometriosis petition to Victims, survivors and loved ones with Endometriosis was written by Liz Scott and is in the category Health at GoPetition.