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Endometriosis
Researchers Share Data, Unknowns
October, 13th, 2005
By Molly M. Ginty
WeNews correspondent
Endometriosis affects 10 percent of U.S. women and can lead
to infertility. Last weekend, researchers focused on new treatments
for a disease that lacks a definitive cure.
By
the age of 22, Misti-Rae Balderas may need a hysterectomy.
But first, this 21-year-old college student will try to have
a child.
At
18, Balderas was diagnosed with endometriosis, which causes
endometrial tissue normally found in the uterus to grow outside
the womb and bleed with each monthly period. Today, she has
such a severe case of the condition that doctors recommend
she have a hysterectomy within the next year to treat her
unbearable abdominal pain.
"My
boyfriend and I hadn't planned to get married or have children
until our mid- to late- 20s," says Balderas, a Houston
resident. "But we'd rather try now than never have children
at all."
Endometriosis,
which affects an estimated 10 percent of U.S. women, causes
blood shed by misplaced endometrial tissue to become trapped
in the pelvis or abdomen with no way to exit the body.
This
can irritate surrounding tissue and cause the symptoms from
which Balderas suffers: heavy periods, severe menstrual cramps,
fatigue, nausea and pain with sex, urination and bowel movements.
Hoping
to vanquish these problems, 700 health advocates gathered
last weekend for the largest and most comprehensive endometriosis
conference to date. Participants shared personal stories of
living with the condition along with the latest scientific
findings.
Sponsored
by the Milwaukee-based Endometriosis Association and held
in conjunction with its 25th anniversary, the early October
conference drew researchers from around the globe who debated
the disease's cause and discussed cutting-edge treatments.
Some
of the findings presented were disturbing, such as a possible
link between endometriosis and thyroid cancer.
Others
were promising, such work on a new diagnostic blood test.
Participants
discussed medications now in development.
They
also surveyed new techniques to ease the pain many patients
experience with sex: surgery to tip the uterus forward and
physical therapy to release pelvic floor muscles.
Since
the only way to eradicate endometriosis is laproscopic surgery
to remove misplaced tissue--and since studies show this remedy
is only up to 66 percent effective--conference leaders focused
on the range of remedies that can help patients stay healthy
while they wait for a definitive cure.
"This
conference showed there is far more to treatment that just
surgery and drugs," says Dr. Deborah Metzger, a gynecologist
and endocrinologist in Los Altos, Calif.
Diagnosis
Can Take Years
Since endometriosis doesn't have visible outward symptoms
and since it is often confused with other conditions, it takes
an average of 10 years to diagnose.
"This
can be extremely frustrating for patients," says Dr.
David Redwine, an endometriosis surgeon from Bend, Ore. "Mothers,
nurses and even doctors tell them, 'You're not comfortable
being a woman. That's why you have pain with intercourse.
Every other woman has periods. Learn to live with it.'"
To
screen for endometriosis, doctors may perform an ultrasound
or take a CA-125 blood test, an older test that detects proteins
found in the blood of some women with the condition.
Until
a newer, more accurate blood test is perfected, the only sure-fire
way to diagnose the disease is through surgical laparoscopy,
in which a scope is placed through the bellybutton to look
for abnormal tissue.
If
a woman has the disorder, the misplaced endometrial tissue
in her body responds to hormonal cycles, shedding blood that
can get trapped and lead to the growth of cysts and scar tissue.
Over time, these adhesions can bind organs together, sometimes
adhering the fallopian tubes to the abdominal wall and causing
infertility.
As
much as 40 percent of women with endometriosis eventually
become infertile. Those with the disorder are also at higher
risk for a host of other health problems: allergies, asthma,
chemical sensitivities, chronic fatigue syndrome, eczema,
fibromyalgia, gastrointestinal disorders, hypothyroidism,
insulin resistance, lupus, Lyme disease, melanoma, migraines,
non-Hodgkin's lymphoma, rheumatoid arthritis and cancers of
the breast and ovaries.
Many
patients must take extreme measures to control their symptoms.
Due
to debilitating fatigue, Mary Lou Ballweg, the director of
the Endometriosis Association, has spent 18 months of her
life bedridden.
To
manage her gastrointestinal problems, Sharon Deevey, a 61-year-old
endometriosis patient from Columbus, Ohio, eats what she describes
as "a diet fit for toddlers: completely bland, with no
seasonings whatsoever."
To
ease chronic abdominal pain, Jen Singer, a 38-year-old Kinnelon,
N.J., resident with endometriosis, had an elective partial
hysterectomy at age 37.
"A
year later, I'm in daily pain once again, most likely from
an adhesion in my right fallopian tube," she says. "At
this point, the most I can do is pray for menopause, when
the symptoms of endometriosis usually cease."
Conference
Tackles Baffling Disease
Last weekend's Endometriosis Association conference kicked
off with a debate between Metzger, who argued endometriosis
was a systemic immune disorder, and Redwine, who argued it
was a localized problem best treated with surgery.
Over
the course of the conference, experts debated wide-ranging
theories about the disease's origin. Some said it lies in
the genes, as women with a mother or sister who has the condition
are seven times more likely to develop it. Some said it starts
in utero, when cells meant to develop into the womb accidentally
wind up in the abdominal cavity.
Some
pointed to the environment, as exposure to the pollutant dioxin
can raise the risk. Others blamed "retrograde menstruation,"
in which tissue a woman sheds during her period backs up into
the fallopian tubes, enters the pelvic cavity and spreads.
Still others said endometriosis starts when the blood system
carries uterine tissue outside the womb.
"Many
believe a combination of these factors can work together to
create endometriosis," says Ballweg. "But until
we understand what causes this disease and develop a cure
that addresses the underlying problem, the best strategy we
have is to use conventional and complementary medicines to
help women stay healthy."
Medications
proven to reduce endometrial tissue growth and slow or halt
menstruation include contraceptive drugs including birth control
pills, injections, patches and rings; and hormone treatments
including Danazol (a pill), Lupron (an injection), Synarel
(a nasal spray) and Zoladex (a pellet inserted beneath the
skin).
Newer,
recently-approved drugs include an improved formulation of
two drugs that can be injected: the contraceptive Depo-Provera;
and depo-subQ provera, a chemical cousin of Lupron, but with
fewer side effects.
Medications
now in development include hormonal drugs called estrogen
receptor beta agonists and selective progesterone receptor
modulators, as well as angiogenesis inhibitors, which work
by cutting off the blood supply that endometriosis needs to
grow.
Surgeries
can range from the conservative (cauterizing, cutting, lasering
or scraping) to the radical (removing the uterus and ovaries).
Alternative
remedies also abound: tai chi, chi kung, chiropractic, guided
imagery, meditation, yoga and dietary modifications including
slashing sugar consumption and taking vitamin C and E supplements.
As
they surveyed these treatments, physicians, scientists and
patients agreed on one point: the need for a definitive cure.
"Endometriosis
doesn't get enough attention in our society: not from researchers,
not from doctors and not from the media," says Ballweg.
"We hope events like this conference will raise awareness,
bring in more scientific funding and possibly even bring us
a cure."
Molly
M. Ginty is a freelance writer based in New York City.
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