The Endometriosis Association is launching a series of new campaigns
to educate the public, health care providers and the news media.
The cornerstone of the new programs will be free, year-round physician
screenings for endometriosis. Beginning March 1, women and girls can access
an Endometriosis Screening Site Locator at http://www.killercramps.org , where they
can also take a self-test to assess their risk for endometriosis. People can
also call the Endometriosis Association toll-free at 1-800-992-3636.
"If patients have 'killer cramps', they need to know that pelvic pain is not
normal. It's the body's way of telling them something is wrong. Nearly nine
times out of 10, it is a sign of endometriosis," said Mary Lou Ballweg,
executive director of the Endometriosis Association. "Endometriosis can be
diagnosed and treated -- the key is the ability of the patient to take charge of her own health."
During Endometriosis Awareness Month, the EA will launch the following
- A public service campaign to help promote the screening site locator and
self-test through a 30-second television spot featuring a well-known,
- An international, grass roots fundraising initiative to kick off in
March to help find a cure for endometriosis.
- A news media education program featuring the Endometriosis Association's
character "Joe with Endo" that illustrates what might happen in medicine
and society if men experienced symptoms of endometriosis.
Despite the availability of treatment, endometriosis is vastly
underdiagnosed. Endometriosis is a common, often debilitating disease that
affects at least 5.5 million women and girls in the U.S. and Canada. It
strikes people from all walks of life -- regardless of socioeconomic class, or
race. Often misunderstood, endometriosis can disrupt all facets of a woman's
or girl's life, including her ability to work, attend school and maintain
healthy, productive relationships.
The most frequent symptom of endometriosis is pelvic pain that may have a
monthly pattern, may or may not be constant, and may interfere with your
ability to perform activities of daily living. Fatigue, exhaustion, or low
energy; pain during or after sex; lower backache during your period; painful
bowel movements, diarrhea, or other stomach upset during your period; stomach
bloating and swelling; and heavy or irregular periods also are common
"It affected every aspect of my life; work, family and friends. It put a
strain on everything. When you're bedridden and in terrible pain a few weeks
out of the month, it definitely affects you," said Renee Shakour, a Boston
native diagnosed with endometriosis. "After I was diagnosed and on treatment,
I had my life back," said Shakour.
On average, it takes at least four and a half years before a woman reports
her symptoms to a doctor. Then, it takes another four and a half years -- and
visits to several different physicians -- before she will be correctly
diagnosed with endometriosis. Many women and girls report that their symptoms
are trivialized by family, friends, and even some in the medical community.
The Endometriosis Association developed the self-test and year-round screening
program to help shorten years of needless suffering and hopelessness.
The scientifically validated self-test is designed to measure your level
of endometriosis risk. It consists of five questions with a scoring system to
alert women and girls to see a physician. Many women who have taken the test
say it empowered them to talk to their doctor about their symptoms or seek
help from a screening physician.
"Women need to know that they don't have to suffer. If you are having
discomfort with your period and it's at all interfering with your daily
activities, seek attention from a health care provider," said Marc Laufer,
M.D., of Children's Hospital, Brigham and Women's Hospital in Boston, MA.
Endometriosis is a hormonal and immunological disease. The name
endometriosis comes from the word "endometrium," which is the tissue that
lines the inside of the uterus and builds up and sheds each month in the
menstrual cycle. In endometriosis, tissue like the endometrium is found
outside the uterus, in other areas of the body such as the ovaries, bowel,
bladder, and abdominal lining. These growths can cause disabling pain,
infertility, scar tissue, and other problems.
Founded in Milwaukee, Wisconsin in 1980 by Mary Lou Ballweg and Carolyn
Keith, the Endometriosis Association is now a worldwide organization. It has
grown to include a network of chapters, support groups, sponsors, physicians,
scientists, and women and girls with endometriosis in 66 countries.