Delray Beach, FL - 08/26/2010 - Warwick, NY area student Gillian Doland has been selected by the Endometriosis Research Center as the face of a new national young women’s health awareness campaign. She will represent the non-profit organization in “Endometriosis & You: Putting Together the Pieces of a Puzzling Disease”, an educational program targeted towards young women, their families and healthcare providers in an effort to raise awareness about the illness.  In alliance with the Endometriosis Foundation of America, the material is being presented to educate teens and adolescents who may be struggling with the effects of the disease.

Endometriosis is a reproductive disorder affecting an estimated 176 million women and girls globally. The quality of life of those with endometriosis is often significantly diminished, as the illness has the potential to cause severe pelvic pain, infertility and a myriad of physical, emotional, academic and work-related issues. Indeed, according to recent landmark study results presented at the 2010 meeting of the European Society of Human Reproduction & Embryology, endometriosis accounts for a significant loss of productivity of over 11 hours per woman per week - 38% more than those without endometriosis (http://endometriosis.org/global_study_womens_health.html). The far-reaching impact of endometriosis is not limited to productivity and emotional, physical aspects alone: research estimates show that costs associated with the diagnosis and care of endometriosis is more than $20 billion annually. The illness has also been linked to a host of related health concerns, such as autoimmune diseases, fibroids, adenomyosis, interstitial cystitis, and even certain malignancies. Qualitative studies indicate that a large number of women with endometriosis remain under-diagnosed, ineffectively treated and isolated as a result of their disease.

Social stigmas and taboos attached to “period pain” and menstruation contribute significantly to the lack of timely intervention and diagnostic delay. Currently, the average delay in diagnosis is a staggering 9 years, and women will see at least 5 doctors before their pain is adequately addressed. Though the median age of diagnosis is 33 and despite the interventional delays most women experience, studies have shown that symptoms often begin early in a young woman’s life; one study even revealing that nearly 70% of those diagnosed experienced pain in adolescence. Many adolescents with endometriosis find themselves unable to attend or participate in classes, social functions, extracurricular activities and sports due to pain and other symptoms. The illness can be quite disruptive and cause significant dysfunction, especially at a time in life when self-esteem, school attendance and performance, and social involvement are all critical.

Often called a “disease of theories”, the definitive cause(s) of endometriosis remain under debate. However, studies indicate that genetics, immune dysfunction, metaplasia (a cell’s ability to transform itself into another type of cell), and exposure to environmental toxicants may all be contributing factors. Landmark research has also implicated mesenchymal stem cells in the pathogenesis of the disease. Any girl or woman of any racial, ethnic and socioeconomic background can develop endometriosis, which is neither contagious nor preventable, but some patients may be genetically predisposed. For example, a woman with a mother or sister who has the disease is 6 times more likely to develop endometriosis herself. Those who begin their period at an early age, experience heavy periods, have periods that last more than 7 days, and/or experience short monthly cycles (27 days or less) may also be at an increased risk. Nonetheless, no single theory explains the development of endometriosis in all patients; more likely, a composite of several mechanisms is involved.

Symptoms of endometriosis can often be debilitating and include:

Painful menstruation
Intermittent pelvic pain
Bowel or urinary disorders
Pain with penetration/intercourse and sexual activity
Severe cramps lasting more than a day
Infertility and pregnancy loss
Gastrointestinal and urinary tract difficulties
Rectal pain
Immune-related disorders

Symptoms, particularly those presenting in young women, are routinely dismissed as “normal” and summarily ignored by doctors, loved ones and even the patient herself. Some women and girls may experience incapacitating pain early on in life; others may not be diagnosed with endometriosis until infertility presents. Despite advances in diagnostic technology, a confirmation of endometriosis requires surgical biopsy. This is obtained through a minimally invasive procedure called laparoscopy. Laparoscopy is typically performed on an out-patient basis and entails visualization of the abdomen and pelvic cavity through an instrument known as the laparoscope. Performed under general anesthesia, this procedure allows your doctor to view the abdominal and pelvic regions to diagnose and subsequently extract the disease. Though use of ultrasounds, magnetic resonance imaging (MRI), computerized tomography (CT scan), and certain endometrial biopsy samples may be used as part of a preliminary diagnostic workup especially in severe cases, anything less than surgical confirmation of endometriosis is considered uncertain.

Though there is currently no absolute cure, laparoscopic excision surgery - ideally performed by experienced, specialized surgeons with dedicated, multidisciplinary medical teams - is an effective, organ-sparing option and is largely considered the gold standard of treatment. Alternative therapies, such as diet and nutrition or acupuncture, can also help manage symptoms.

Miss Doland was chosen to represent the campaign because she is relatable to younger patients; endometriosis does not discriminate – it affects girls from all socioeconomic backgrounds and ethnicities. Though they may look healthy on the outside, many adolescents struggle in silence with effects of the devastating illness. The ERC points to the case of another Warwick, NY former student, Julie, whose own battle illustrates the difficulties of living with endometriosis from an early age. Suffering for many years, Julie missed out on much of her high school time and struggled with intolerable pain and isolation, due largely in part to the incredible lack of awareness that continues to enshroud the illness both among the lay and clinical communities alike. She underwent repeated surgeries and medical treatments locally, exhausting the limited options offered to her by area physicians - all of which failed. With her dedicated mother, Beth, by her side, she took charge of her own care and sought answers for her continuing pain and severely compromised quality of life. It was not until she traveled nearly 1,000 miles to the Center for Endometriosis Care, a specialty Laparoendoscopic excision treatment center in Atlanta, GA, however, that she was able to regain her quality of life and return to school. Still, her case was particularly aggressive, as the disease often is in younger women; she required a second surgery at the CEC (http://www.centerforendo.com) before being fully healed. Despite having been dismissed and ineffectively treated for years prior to her surgeries with the CEC, today Julie is realizing the full potential of her life as a thriving college student, finally able to move on from an insidious and painful disease which had negatively impacted every aspect of her being for the majority of her adolescence.

The foundations strongly advocate for early diagnosis and proper treatment, particularly among young women, maintaining the viewpoint that if girls like Julie were able to receive timely intervention and more efficient treatment early on, they would not suffer a fate similar to Julie’s and many other adolescents like her.  While most women and girls experience discomfort with their periods due to the release of inflammatory hormones such as prostaglandins, this latest joint venture by the organizations is designed to stress that debilitating pelvic pain and “killer cramps” are never normal, despite myths to the contrary.

The presentation is available online at no cost to all healthcare professionals and interested parties by visiting http://www.endocenter.org/GirlsforaChange.htm.

The ERC is a 501(c)3 non-profit organization founded by Executive Director Michelle Marvel in 1997 that provides education, support and advocacy, raises public and legislative awareness, and facilitates research into every aspect of endometriosis from pathogenesis to treatment. “Endometriosis and You” is presented as part of the ERC’s Girl Talk program, which was implemented over a decade ago to specifically serve the unique needs of young women concerned with the disease. Learn more about the ERC’s ongoing efforts as a leader in the endometriosis community by visiting http://www.endocenter.org.

The EFA is a 501(c)3 non-profit endeavor founded by the international celebrity, designer, Top Chef Host and endometriosis advocate, Padma Lakshmi, and world-renowned gynecologic surgeon and NYC-based endometriosis specialist, Tamer Seckin, MD. The EFA provides hope to women suffering from the debilitating effects of endometriosis and addresses societal prejudices and misinformation about the disease in the medical community. In addition to other various education and awareness efforts, the organization hosts the annual gala fundraising affair, the Endometriosis Blossom Ball, and a scientific conference on endometriosis featuring world leaders on the disease. Learn more about the EFA’s important mission by visiting http://www.endofound.org.