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March Is Endometriosis Awareness Month

February 28, 2010

Backed by Congressional legislation, the Endometriosis Research Center is again celebrating March as “Endometriosis Awareness Month” in honor of all those affected by the disease.

Endometriosis is a painful reproductive and immunological disease in which tissue similar to the uterine lining (endometrium) migrates outside the womb and implants in other areas of the body. The disorder, for which there is no absolute cure, affects over 5.5 million women and girls in the U.S. alone and more than 70 million globally. Often stigmatized as simply “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 much more. The disease can even implant in areas like lungs, diaphragm, and in some cases, even the brain.

Moreover, research has shown an elevated risk of certain cancers and autoimmune 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 studies indicate that genetics, immune dysfunction and exposure to environmental toxicants may be contributing factors. The economic impact of Endometriosis is staggering: American businesses lose billions of dollars each year in lost productivity and work time because of the disease.

The ERC maintains that Endometriosis is more than just painful periods. “We continue to find that the disease remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of hysterectomy, infertility and pelvic pain in women and girls around the globe,” said Michelle E. Marvel, ERC Founder & Executive Director. “Despite hallmark symptoms, 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 adequately addressed,” she added. Endometriosis can affect women from all walks of life ranging from adolescence to post-menopause, and be so painful as to render a woman or girl unable to go about her normal routine. “It is not unusual for a patient to undergo repeated surgeries and embark on different medical therapies; many carrying significantly negative side effects and none offering long-term relief,” noted Marvel.

A growing number of younger women are also being diagnosed annually, with studies indicating that as many as 70% of teenagers with chronic pelvic pain ultimately have Endometriosis proven by surgery. Studies have also shown that Endometriosis may have an even bigger impact on younger patients: in those under 22 years of age, the rate of recurrence was double that of older women (35% versus 19%). Studies have also revealed that the disease behaves differently in younger women, leading researchers to believe it may be a different form of Endometriosis altogether. “It is imperative that society begins to recognize the far-reaching impact this illness continues to have on patients of all ages, not just those trying to conceive, in order to ensure that our daughters do not continue to suffer as we have,” noted Heather Guidone, an ERC Executive Board Member and the Program Director of the Center for Endometriosis Care.

The ERC strongly advocates for early intervention, timely diagnosis and efficacy of treatment for the disease. Through their efforts to raise public awareness in the medical and lay communities, the organization hopes to facilitate better support of patients, increase physician understanding of the disease and raise research funding, which will hopefully lead to more effective treatments and ultimately, a cure. The ERC, unique in that it is a free organization, has traditionally celebrated the entire month of March as Awareness Month, coinciding with the organization’s annual anniversary.

The ERC is sponsoring various education and awareness initiatives throughout March across the nation this year, ranging from their “Adopt a Doctor” program to various fundraising for the cure events. If you wish to participate in the “Adopt a Doctor” program, distribute ERC educational brochures and/or help with other activities, please contact us at askerc@endocenter.org.

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