March marks the annual health awareness month recognition of Endometriosis Awareness Month. Often stigmatized as merely “killer cramps,” endometriosis is a poorly-understood disease characterized by pelvic pain, painful menstruation, infertility and pregnancy loss, pain with sexual activity, gastrointestinal and urinary tract difficulties and more.
During normal menstruation, the lining of the uterus (endometrium) breaks down, bleeds and exits the body. With endometriosis, however, these endometrial glands and stroma aberrantly implant on internal structures. The wayward tissue responds to normal hormonal commands, resulting in microscopic internal bleeding, inflammatory reaction, formation of debris-filled ovarian cysts known as endometriomas, and development of fibrosis, scar tissue and adhesions. The disease commonly causes loss of fertility, debilitating and often chronic pain as well as sexual dysfunction and impairment of the reproductive, bowels, bladder and nearby organs. Surgical confirmation is required for accurate diagnosis.
A Global Disease With No Cure
Endometriosis, for which there is no absolute cure, affects over 176 million women and girls globally with staggering societal costs soaring past $100 billion annually.
“We continue to find endometriosis is routinely misunderstood, under-diagnosed and ineffectively treated, despite being one of the most prevalent causes of hysterectomy, infertility and pelvic pain in women and girls around the world,” said Michelle E. Marvel, Founder and Executive Director of the Endometriosis Research Center. “Despite hallmark symptoms, the average delay in diagnosis remains an astounding 6-10 years, and a patient will seek counsel of 5 or more physicians before her pain is adequately addressed,” she added.
Though definitive causes remain debatable, late studies indicate genetics, stem cell pathophysiology and immune dysfunction play an important role. Endometriosis can affect women from all races and socioeconomic backgrounds from adolescence to post-menopause, and the symptoms can be life-altering. “It is not unusual for a woman or girl to undergo repeated surgeries and embark on different medical therapies; many carrying significantly negative side effects and none offering long-term relief,” noted Marvel. “It is imperative that society begins to recognize the far-reaching impact this illness continues to have on women of all ages, not just those trying to conceive, in order to ensure that our next generation does not continue to suffer through delayed, substandard care as millions have before them,” she said.
How You Can Raise Awareness
Join RESOLVE New England during the month of March as we raise awareness via Facebook and Twitter. Share our posts on your own Facebook and Twitter pages and help spread the word about a disease that affects as many as 1 in 10 women or reproductive age globally. You can follow RESOLVE New England on Facebook here and follow us on Twitter here.
Help us raise awareness for Endometriosis Awareness Month!
This article has been adapted with permission from the Endometriosis Research Center and originally posted on our blog in March 2013.
About the Author
Heather Roppolo Guidone is the senior voting director, Executive Board for the Endometriosis Research Center (ERC). ERC strongly advocates for early intervention, timely diagnosis and efficacy of treatment. ERC offers support groups online and in New England. They are also on Facebook.
ERC has traditionally celebrated March as Endometriosis Awareness Month, coinciding with the organization’s annual anniversary. A pioneer and continued leader in the efforts to increase disease recognition, the organization previously worked with U.S. Congress to establish the country’s first-ever National Resolution, H. Con. Res. 291. The first national legislative act of its kind, the Resolution “…expresses the sense of Congress with respect to the disease endometriosis and strongly supports the Endometriosis Research Center’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.”