Leading organization celebrates 15th annual recognition effort honoring women and girls with painful condition
The Endometriosis Research Center (ERC) is pleased to once again honor those with endometriosis through the organization´s 15th annual “Awareness Month” recognition. 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. Primarily affecting the abdominopelvic organs, endometriosis is also sometimes found in extrapelvic locations such as the lungs or diaphragm. The disease is often linked to other painful conditions including autoimmune disorders, Interstitial Cystitis, Pudendal Neuralgia, and rarely, certain malignancies.
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 severe, 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.
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, ERC Founder and Executive Director. “Despite hallmark symptoms, the average delay in diagnosis remains an astounding 6 or more years, and a woman will seek counsel from at least 5 physicians on average before her pain is adequately addressed,” she added.
Though definitive causes remain debatable, late studies indicate that 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 different medical therapies; many with significantly negative side effects and none offering long-term relief,” said Heather Guidone, the Surgical Program Director of the Center for Endometriosis Care and an ERC Board Member. “It´s imperative that society really starts recognizing the far-reaching impact this illness has on women of all ages – not just those trying to conceive – so that our next generation doesn´t continue to suffer through delayed, substandard care as millions have before them,” said Guidone.
ERC has traditionally celebrated March as 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.”
ERC strongly advocates for early intervention, timely diagnosis and efficacy of treatment. To get involved and learn more, visit the organization at www.endocenter.org.
The Endometriosis Research Center & Women´s Hospital is a 501 (c) 3 non-profit organization. A copy of the official registration and financial information may be obtained from the Division of Consumer Services by calling 1-800-435-7352 toll-free within the State of Florida . Registration does not imply endorsement, approval or recommendation by the State. Registration #SC-07844. Donations are received 100% by the ERC.