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An accurate and complete medical history as well as a
thorough pelvic examination can often go a long way towards
identifying endometriosis. In fact, if you believe your
symptoms may mean endometriosis, it is a good idea to write
down what they are and where and when they occur. Don't leave
anything out. Spitting up blood may seem unrelated to
endometriosis, for example, but if it happens regularly
during menstruation, it suggests a case of endometriosis in
the lung (where endometrial tissue sometimes has been found).
Another positive indication of endometriosis is pain that
specifically effects an unusual location in your body and
happens only when your period arrives. This helps separate it
from the menstrual pain that centers on the reproductive
organs.
During the physical
exam your doctor may find nodules formed by endometriosis in
the back of the vagina, in the rectum, and on the ligaments
supporting the uterus, as well as tender and enlarged
ovaries, lumps in the abdomen, or a uterus drawn back and
attached to the rectum.
Magnetic resonance
imaging (MRI) which produces three-dimensional images of the
body's interior structures, can sometimes spot endometriosis
implants in soft tissue.
Ultrasound, which
also produces interior images, has been used to examine
tissue masses attached to the uterus and the ovaries.
However, neither technique is definitive for diagnosis, nor
are there any reliable laboratory tests yet
available.
Several studies on
basal (resting) body temperature, often used to confirm
ovulation, report that in women with endometriosis this
temperature remains high as their period begins—rather
than dropping as it does in women without the disease. One
U.S. research group reports that in their studies two out of
three women with endometriosis, had temperatures above 97.8
for the first three days of their periods. This contrasts
sharply with the one in 16 among those who did not have
endometriosis. A combination of basal body temperature charts
and a blood test may one day be able to detect if a woman has
the disease.
Laparotomy, a
technique that requires a substantial incision in the
abdominal wall, is now seldom performed just to diagnose
endometriosis. If this major operation is required to reach
and attack some other disease of the pelvis, it provides an
opportunity to identify and evaluate potential
endometriosis.
However, most
authorities now agree that the only safe, reliable way to
distinguish between endometriosis, PID, pelvic growths, and
other disorders that produce symptoms similar to those of
endometriosis is a technique called laparoscopy. With the
tiny lighted lens of a laparoscope inserted through the
navel, the doctor is able to see into the abdomen and examine
the organs. Implants of endometrial tissue outside the uterus
can be seen and distinguished from cysts, tumors, fibroids,
and adhesions in the pelvic area. So can any existing
fallopian tube obstruction and pelvic inflammatory
disease.
Goto
top
Once a diagnosis
has been made, your doctor may recommend surgery or
medication or a combination of the two approaches. Surgery,
of course, aims to remove the source of pain and interference
with the normal functioning of affected organs. Surgical
treatments range from burning up endometrial implants with a
laser beam to removing the affected organs themselves. For
advanced endometriosis, the doctor may consider hysterectomy
and bilateral oophorectomy, in which the uterus and both
ovaries are removed. This radical surgery, reserved for the
most extensive and resistant cases, suppresses hormonal
stimulation of endometriotic tissue growth by removing the
main sources of the hormones.
Treatment with
drugs also revolves around the connection that appears to
exist between the hormonal variations of menstruation and the
development of endometriosis. These medications moderate or
suppress ovulation (the ripening and release of an egg for
fertilization) to create a temporary pseudo-menopause (in
contrast to the permanent menopause achieved by radical
surgery). Alternatively, your doctor may decide to use
hormonal medications to produce a pseudo-pregnancy. Either
way, the goal is the same: elimination of the long periods of
estrogen production that stimulate endometrial tissue growth.
Hormonal therapy can reduce both the size and number of
endometrial tissue even causing some to waste away. These
treatments, however, may cause a temporary failure to
menstruate, along with vaginal dryness, a near-menopausal
state, and estrogen deficiency problems. What works best for
one woman may not help another. Usually a combination of
medication and surgical treatments tailored to the individual
keeps endometriosis in check, maintains or improves
fertility, and avoids serious medication side
effects.
Keep in mind that
no treatment can absolutely prevent endometriosis from
re-appearing. Even the most extensive and complete
destruction and removal of endometrial tissue that has
established itself outside a woman's uterus does not
guarantee permanent freedom from pain or progression of the
disease. Among women whose endometrial tissue implants are
destroyed by lasers or electrocautery, 40 percent are
estimated to face endometriosis again within five years, and
10 percent of those who have undergone total hysterectomy
will have recurring pain.
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FOR MANY, PINPOINT SURGERY SOLVES THE
PROBLEM
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A high-tech surgical technique
called laparoscopy now allows doctors to locate and
remove misplaced patches of uterine tissue without
leaving a major scar. Working through a inch-long
incision, the surgeon can search the reproductive organs
for unwanted growths, then snip, burn, or vaporize them
away. Impossible until the development of fiber optics
and high-resolution video, the whole procedure often
takes less than a day, from admission to
discharge.
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Surgical
Approaches
Laparoscopy, as well as providing an accurate
diagnosis without major surgery, has also changed surgical
treatment for the disease, especially with the added
development of laser surgery. A surgeon using a laparoscope
to see and diagnose endometriosis can also use it to aim an
obliterating laser beam at unwanted tissue growths,
adhesions, and other obstructions to normal functions.
Cutting and cauterizing (tissue burning) instruments can also
be used with the scope. This makes it possible to diagnose
and surgically treat endometriosis in the same visit, if you
and your doctor agree.
Depending on what
is found during laparoscopy, and the surgical repairs needed,
the operation can range from 15 minutes to several hours. You
can usually be discharged from the hospital the same or next
day. Since the operation requires an empty stomach, don't eat
for at least eight hours before the procedure is scheduled.
Patients are usually put to sleep during the operation
itself.
At the beginning of
the operation, a cannula (probe) is placed in the uterus and
an incision made in or near the navel. (See nearby
illustration.) Gas, usually carbon dioxide, is then pumped
into the abdomen through the incision to inflate the cavity
so the organs inside can be separated and more easily viewed.
To shift the intestines away from the lower abdomen so that
other organs can be seen more clearly, you are tilted head
downward. The scope, inside a hollow tube, is inserted
through the small incision at the navel. The scope's flexible
fiber optics, which transmit light along thin threads of
glass, let the doctor look all around the organs, photograph
their surfaces, and collect tissues for study in the
laboratory.
Sometimes the laser
is inserted through the same tube as the scope; sometimes it
is introduced through another small incision. It cuts,
coagulates, and vaporizes cells and tissues with microscopic
precision, using the heat produced by its concentrated
light.
At the end of the
operation, the incision is closed with a pair of stitches and
covered with a plastic bandage. You can expect to have
tenderness there for about a week. Trauma from manipulation
of the organs, plus any left-over gas, may cause you
discomfort in the abdomen, neck and shoulder. You may also
feel some nausea for a few days. If you were put to sleep
during the operation, you may briefly experience a sore
throat and difficulty concentrating.
The advantages of
this surgical approach, besides a shorter and less expensive
hospital stay, include less likelihood of complications;
reduced tissue injury, bleeding, and scar tissue formation;
rapid diagnosis and treatment; and an easier, swifter, less
painful recovery. The risks it carries are mainly those of
instrument insertion and heat injury plus potential
anesthetic complications. Meanwhile, it directly attacks the
causes of pain and infertility, the most important concerns
of women about endometriosis.
Laparotomy, on the other hand, is an operation that
can keep you in the hospital for a week. Recovery is also
slower and more painful, and there is a greater danger of
post-op infection. The operation, which involves opening up
the abdominal cavity, is called for when endometriosis is so
widespread (and perhaps accompanied by other related
diseases) that it can't be handled through the tiny incision
used in laparoscopic surgery. Appendix, bladder, bowel, and
kidney involvement, for example, may require special surgical
techniques only practical with laparotomy. If there are large
cysts to be removed—not uncommon in
endometriosis—this is often manageable only with
laparotomy. The same is true of large endometrial growths
that form a mass involving a number of organs.
Many other
operations and related tests may be performed to deal with
specific problems during treatment for endometriosis. Among
them are:
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Neurectomy: A surgical procedure to cut or block
the nerves that transmit the pain of the disease.
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Suction evacuation: Removal with a suction device
of the ovarian cysts that may accompany
endometriosis.
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Myomectomy: Surgical removal of fibroid growths
from the uterus.
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Salpingectomy:
Surgical removal of a fallopian tube.
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Renogram: A study of kidney function done by
externally monitoring radiation levels in the bladder as
a radioactive chemical enters it from the kidney.
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Intravenous pyelogram: an x-ray examination of the
kidneys, bladder, and ureters (the tubes between the
kidneys and bladder) using a dye injected through a vein
in the hand or arm.
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Cystoscopy: Examination of the wall of the bladder
with a thin, lighted probe inserted through the urinary
opening.
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Thoracentesis: A search for endometrial blood in
the lungs through a small puncture in the wall of the
chest.
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Proctosigmoidoscopy : Insertion of lighted tube to
search for tumors, polyps, or endometrial tissue in the
lower bowel.
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Barium enema: An x-ray of the lower bowel to check
for obstructions, deformities, tumors, and polyps.
Hysterectomy, either partial or complete removal of
the uterus, is the final major surgical approach to
endometriosis. Normally, your doctor will try to keep disease
in check while preserving the uterus and at least one ovary
and fallopian tube, so you can still become pregnant.
However, if recurrent endometriosis is a major threat to your
organs and general health and repeated surgery has made
“living with” the disease intolerable, you need to
consider this “radical” surgery. It is clearly a
serious decision, taking into consideration your lifestyle,
your age, and your psychological and physiological responses
to bodily changes. You need to weigh the long-term
consequences of the premature menopause that results from the
operation against the option of waiting for natural
menopause, when the higher levels of hormones found with
fertility will gradually fall. Surgical menopause in younger
women puts them at greater risk of developing coronary heart
disease and osteoporosis (brittle bones).
Once the decision
has been made to go ahead, you will want to be prepared for a
long convalescence that could take as long as two months. The
operation will be performed under general anesthetic and
usually lasts several hours. The uterus will be removed
through an incision in the lower abdomen or at the top of the
vagina. All endometrial tissue found outside the uterus will
also be removed and adhesions repaired. Usually, the
operation is combined with a bilateral oophorectomy, in which
the ovaries and fallopian tubes are removed, so that this
source of hormonal stimulation of endometrial tissue growth
disappears. You will be encouraged to get out of bed the next
day and walk a little, with the prospect of going home in a
week or possibly two. There may be some vaginal bleeding and
discharge for a day or two.
Estrogen
replacement therapy may be started within days, weeks or
months, depending on whether you are experiencing any
menopausal symptoms such as hot flashes and whether you and
your doctor are convinced all endometrial tissue is gone.
Micronized estradiol (Estrace), in small doses, by mouth or
skin patch (Estraderm), can be balanced with the hormone
progesterone to control any flare-up of
endometriosis.
Surgery and
Medication Combined
This example of
using medications along with surgery, even radical surgery,
illustrates how combined therapy works. In another instance,
androgen, a male hormone modified in the laboratory as
Danazol (danocrine) is taken for six weeks before surgery to
shrink endometrial tissue and ease its surgical removal.
Because the surgery follows the hormonal treatment, it's
possible to get rid of adhesions formed while the hormone
heals the disease. Following surgical removal of a moderate
amount of endometriotic tissue, your doctor may prescribe
birth control pills that contain the two female hormones,
estrogen and progesterone, to be taken continuously for up to
nine months. The idea, of course, is to fool the endometrial
tissue outside the uterus into reacting as though the body
were pregnant, so that the tissue does not grow, shed or
bleed. Since the hormones achieve this in the same way they
prevent conception—by producing a state of
pseudo-pregnancy in which ovulation and menstruation are
supressed—the endometriosis remains inactive.
Likely
Medications
Any birth control
pill will do the job, but those with a high progesterone
level are preferred. Potential side effects are the same as
those that may be encountered when the pills are taken for
contraception. (For further information see chapter 21,
“Hormonal Options: Pills, Shots, and
Implants.”)
Progesterone-only
medications also may be prescribed. Oral forms include
Provera and Micronor. Quarterly injections of Depo-Provera
are another alternative. These medications bring relief by
shrinking endometrial tissue. Among their side effects are
water retention, weight gain, and acne. As with the birth
control pills, this treatment usually lasts 6 to 9 months
until the problem abates. Endometriosis recurrence rates with
any of these pseudopregnancy treatments are 5 to 10 percent
annually. Pregnancy rates after stopping the medication are
highest for progesterone-only medications.
The pseudomenopause
approach to endometriosis treatment relies on medications
that prevent the release of two hormones that govern
production of estrogen and progesterone. This pair of
hormones—called luteinizing hormone (LH) and
follicle-stimulating hormone (FSH)—originate in the
pituitary gland at the base of the brain. Together, they
stimulate the ovaries to release eggs and produce the
estrogen and progesterone that prepares the endometrium to
receive an egg.
Drugs called
gonadatropin-releasing hormone (GnRH) analogs, shut down
secretion of LH and FSH by overloading the pituitary's
production facilities. In effect, the GnRH analogs create a
“reversible oophorectomy.” That is, they put an end
to ovulation without removing the ovaries. The near
menopausal state that results stops menstruation and the
growth of endometrial tissue, and reduces the pain of
endometriosis. Of course, it also brings with it the problems
of estrogen deficiency, ranging from hot flashes and
headaches to increased risk of osteoporosis. These problems
can be halted by going off these medications, and fertility
then appears to be regained. In fact, these drugs are not
reliable contraceptives, and your doctor will usually advise
you to use barrier contraceptives if you have intercourse
while taking them. Treatment is not started if you are
pregnant and is stopped if you become pregnant.
GnRH analogs can be
taken as a nose spray (Synarel), as a daily or monthly
injection (Lupron), or as a monthly implant beneath the skin
(Zoladex). A course of treatment lasts 6 months.
The drug Danazol,
also stops the pituitary from secreting LH and FSH hormones,
in turn drastically reducing the ovaries' production of
estrogen and progesterone to an amount too small to support
monthly periods. Deprived of the regular hormonal surges on
which they depend, implants of endometrial tissue in the
pelvis begin to shrink, and pain, both pelvic and menstrual,
declines. Treatment, which may last 3 to 9 months, can be
adjusted for mild, moderate, or severe endometriosis by
modifying dosage. Side effects include mood, skin, hair,
voice and sex drive changes. Some women gain weight; some may
experience vaginal dryness, bloating, and sporadic menstrual
bleeding. Levels of HDL (the good cholesterol) may fall, but
gradually return to normal after treatment is stopped. Cases
of high blood pressure and stroke have been
reported.
As with GnRH
analogs, there is no guarantee that this drug will prevent
pregnancy, and the same contraceptive precautions apply. Two
or 3 months after the drug is stopped periods usually return
and pregnancy becomes possible. If endometriosis comes back,
treatment can be resumed, provided you have not become
pregnant.
All medications
that change your hormonal balance need to be monitored
closely by both you and your doctor. They are powerful and
can be dangerous in women who have conditions that the drug
may aggravate. On the other hand, most of their side effects
can be controlled without giving up the medications'
beneficial effects on endometriosis. It's wise to consult
your doctor before starting, stopping, or resuming treatment
with any of these drugs.
In addition to
pain-relief medications available over-the-counter, a number
of prescription products can be used to reduce the pain of
endometriosis. These drugs, called non-steroidal
anti-inflammatories include Naprosyn, Feldene, Ponstel,
Rufen, Clinoril, Motrin, Nalfon, Dolobid, Meclomen, Tolectin,
and Indocin. Narcotic pain-killers such as codeine,
oxycodone, meperidine and morphine, as well as narcotics
combined with other pain relief drugs, may also be
prescribed.
What Treatments
Cost
Though prices do
change rapidly and vary from one part of the country to the
other, here are some “ball-park” figures:
Laparoscopy: $1,000 to $3,500, depending on the extent of the
disease, plus hospital or out-patient charges. Laparotomy:
$2,500 to $4,000 plus the additional cost of a longer
hospital stay. A hysterectomy with a bilateral oophorectomy
averages $2,200, more if extensive repair is required for
endometriosis-damaged organs and tissues.
Treatment with
hormonal medications (usually 6 to 9 months) runs $225 to
$350 a month, not including the cost of monitoring tests and
physician charges. Oral contraceptives, when they can be
used, are less expensive.
Looking
Ahead
The medical
approach to endometriosis is long past the “it's all in
your mind” stage. Doctors realize that the disease's
severe, often incapacitating pain, sometimes repeated monthly
for years while the disease progresses to destroy tissues,
organs, and hopes of pregnancy, can devastate a woman's life.
Worse yet, the disease can come back and continue even beyond
the childbearing years, its unpredictable course varying from
person to person.
But now, with
recognition and diagnosis better than ever before, the
disease is controllable in a large majority of cases. Most
women can find relief through the combination of
sophisticated treatments now available. The most important
step is to see your doctor for a full review of the risk
factors and treatment options open to you. There is no need
to suffer this disease in silence. Early diagnosis and the
right treatment can literally change your life.
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