Health
care providers use the term Premature Ovarian Failure (POF) to describe a stop
in normal functioning of the ovaries in a woman under the age of 40. Many women
naturally experience a decline in fertility at age 40; this age may also mark
the beginning of irregularities in their menstrual cycles that signal the onset
of menopause. For women with Premature Ovarian Failure, the fertility decline
and menstrual irregularities occur before age 40, sometimes even in the teens.
Some health care providers also use the term primary ovarian insufficiency
to describe this condition.
In the past, health care providers called this condition premature menopause,
but this term is not an accurate description of what happens in a woman with
Premature Ovarian Failure. A woman who has gone through natural menopause will
rarely ever have another period; a woman with Premature Ovarian Failure is much
more likely to have periods, even though they might not come regularly. There is
virtually no chance for a woman who has gone through menopause naturally to get
pregnant; in some cases, a woman with Premature Ovarian Failure can still get
pregnant.
What
Causes Premature Ovarian Failre?
Although
researchers have a general idea of what causes Premature Ovarian Failure, in
most cases the exact cause remains unclear.
To understand what happens in Premature Ovarian Failure, you need to understand
what happens in a woman’s body when it’s functioning normally.
The
Normal Menstrual Cycle
In
general, a woman’s reproductive health involves her:
Hypothalamus
(pronounced high-poe-THAL-amus)—part of the brain that functions as the
main control for the body’s reproductive system. The hypothalamus works
like a thermostat in a furnace, in that it controls the levels of different
hormones and other chemicals in the body. If the hypothalamus detects that
there is too little of a hormone in the body, it orders the body to make
more.
Pituitary
(pronounced pitt-OO-ih-terry) gland—the body’s master gland. The
pituitary sends out hormones, or chemical signals to control the other
glands in the body. The pituitary gets orders from the hypothalamus about
what the body needs.
Ovaries—the
source of eggs in a woman’s body. The ovaries have follicles, which
are tiny, fluid-filled sacs that hold the eggs. The ovaries also make
hormones that help to maintain a woman’s health, such as estrogen,
progesterone, and testosterone. The ovaries receive the chemical signals
from the pituitary and respond by making certain hormones. In POF, the
ovaries stop working correctly in both their egg production role, and in
their hormone production role.
Uterus—where
a woman carries a baby, also called the “womb.” The uterus has different
layers; its innermost layer or lining is called the endometrium—endo
means “inside” and metrium (pronounced MEE-tree-um) means “womb.”
The endometrium functions as a bed for an embryo when a woman is pregnant.
If no pregnancy occurs during the cycle, then the endometrium is shed as a
menstrual flow, or a period, and the cycle starts all over again.
These
parts interact with one another to coordinate a woman’s monthly menstrual
cycle.
The
hypothalamus keeps track of the level of estradiol (pronounced
ess-trah-DYE-awl) in the body. Estradiol is the natural estrogen that a
woman’s body makes, so we’ll call it estrogen from now on.
When
the level gets low, the hypothalamus sends an order to the pituitary gland
telling it that the body needs more estrogen.
The
pituitary gets the order and responds by sending out follicle stimulating
hormone (FSH), a hormone that causes the follicles on the ovary to grow
and mature. Mature follicles make estrogen and other substances, such as
inhibin. The pituitary continues to make FSH until the mature ovarian
follicles make enough estrogen. If the follicles don’t make enough
estrogen, the level of FSH goes even higher.
When
the level of estrogen gets high enough, the hypothalamus and pituitary know
that there is a mature egg in one of the follicles. To get this egg to the
uterus so that it can be fertilized, the pituitary sends out a large burst
of luteinizing hormone (LH). LH breaks open the mature follicle to
release the egg, which allows it to move toward the uterus. The level of LH
is only high during the time an egg is being released. This LH burst is the
basis for home ovulation detection kits. Because LH may be high throughout
much of the menstrual cycle in women who have Premature Ovarian Failure,
home ovulation detection kits are unreliable in these women.
The
empty follicle is then transformed into a yellowish, corpus luteum
(pronounced CORE-puss loo-tee-um). Corpus means “body” and luteum means
“yellow.” The corpus luteum makes progesterone, the hormone that
prepares the uterus for pregnancy.
Increased
levels of progesterone cause the endometrium to change in preparation for
pregnancy, should it occur. Once the endometrium is properly prepared, it
can support an embryo and allow the embryo to grow.
If
the egg is fertilized, it sends out a hormone called HCG to let the body
know that it’s there. HCG causes the corpus luteum to continue to make
progesterone, the hormone needed for pregnancy. Pregnancy tests measure the
level of HCG. If HCG is present, then it’s likely that a woman is
pregnant.
If
there is no signal, that is, no HCG is present because the egg wasn’t
fertilized, the corpus luteum stops making progesterone. Without
progesterone, the endometrium starts to break down, and the woman’s body
sheds it as her period.
What
Happens Differently in Premature Ovarian Failure?
Currently,
researchers are unable to pinpoint exactly what happens in Premature Ovarian
Failure to stop normal function of the ovaries in most cases. Remember that the
FSH levels are high when the ovaries fail to produce enough estrogen. LH levels
also stay high in many cases, even during the occasional times that follicles
successfully grow. Mature follicles in the ovaries make estrogen, as well as
other substances, including the protein inhibin. Because women with Premature
Ovarian Failure have low levels of estrogen, scientists are focusing their
attention on the follicles in the ovary in their study of Premature Ovarian
Failure.
Follicles
in the ovaries start out as microscopic seeds, called primordial
(pronounced prime-OR-dee-ul) follicles. These seeds are not yet
follicles, but can grow into them. In general, a woman is born with about two
million primordial follicles, which should be enough to last her until she goes
through menopause. But this may not be the case for a woman with POF. Women with
POF may fall into one of two groups.
Follicle
Depletion
A
woman with follicle depletion has no responsive follicles left in her ovaries.
There is no way for the body to make more primordial follicles. And, currently,
there is no way for scientists to make primordial follicles. Although scientists
haven’t identified all the causes of follicle depletion, some known causes
include:
Chemotherapy
or radiation therapy—strong treatments for cancer.
An
abnormal or missing X chromosome—the X chromosome stores genetic material
that helps “build” a person. It also helps to determine whether a person
is a male or a female. Females need two normal X chromosomes to make enough
primordial follicles, and to use them properly. If a critical part of either
X chromosome is missing, or if an entire X chromosome is missing, the body
may not make enough primordial follicles to begin with, or it may use them
up too quickly. This problem is the cause of Premature Ovarian Failure in 2
percent to 3 percent of women with the condition.
Even
when it appears that all a woman’s follicles are depleted, it is possible
that a very small number of surviving follicles can, without warning, begin
to function on their own. This spontaneous function can cause ovulation or a
menstrual period; if insemination occurs, this function could lead to
pregnancy, although such a situation is uncommon. Currently, health care
providers can’t predict which women with POF will experience this recovery
of ovarian function.
Follicle
Dysfunction
A
woman with follicle dysfunction still has follicles in her ovaries, but for
unknown reasons they are not working properly. Currently, scientists do not have
a safe and effective way to make follicles start working normally again.
Although they have yet to identify all the causes of follicle dysfunction, some
known causes include:
An
autoimmune attack—the immune system normally protects the body from
invading bacteria and viruses. In some women, though, for reasons
researchers don’t understand, the immune system attacks developing
follicles, which prevents the follicles from working the way they should.
Current research suggests that this type of problem occurs in 5 percent of
women with Premature Ovarian Failure.
A
low number of follicles—even though only one mature follicle releases an
egg each month, that follicle usually has less mature follicles developing
along with it. Scientists don’t understand exactly how, but these
supporting follicles seem to play a role in helping the mature follicle
function normally. If these extra follicles are missing, the dominant
follicle becomes luteinized and will not mature and release an egg properly.
Current research estimates that this problem may occur in up to 60 percent
of women with Premature Ovarian Failure, but this is not a definite number.
Research
also shows that 10 percent to 20 percent of women with Premature Ovarian Failure
have a family history of the condition, which could mean that some cases of
Premature Ovarian Failure have a genetic component. But, inheritance patterns
show that Premature Ovarian Failure is not a purely genetic disorder. Research
into the causes of Premature Ovarian Failure is ongoing, in hopes that knowing
why it occurs will also help in developing treatments for the disorder.
How
Many Women Have Premature Ovarian Failure?
Premature
Ovarian Failure affects approximately:
One
in 10,000 women by age 20
One
in 1,000 women by age 30
One
in 250 women by age 35
One
in 100 women by age 40
What
are the Symptoms of Premature Ovarian Failure
The
most common first symptom of Premature Ovarian Failure is having irregular
periods. Health care providers sometimes dismiss irregular or skipped periods
(sometimes called amenorrhea—pronounced AY-men-or-ee-uh) as being related to
stress; but a woman’s monthly cycle is actually an important sign of her
health, in the same way that blood pressure or temperature are signs of health.
If you have irregular periods or skip periods, you should tell your health care
provider, so that he or she can begin to determine the cause of these problems.
Some women with Premature Ovarian Failure also experience other symptoms with
Premature Ovarian Failure. These symptoms are similar to those experienced by
women who are going through natural menopause and include (but are not limited
to):
Hot
flashes
Night
sweats
Irritability
Poor
concentration
Decreased
interest in sex
Pain
during sex
Drying
of the vagina
Infertility
How
Do I Know If I May Have Premature Ovarian Failure?
One
of the most common signs of Premature Ovarian Failure is having irregular
periods. Women should pay close attention to their menstrual cycles, so that
they can alert their health care provider when changes occur in their periods.
If
you are under age 40 and your periods are irregular, or if you miss your period
altogether for three months or more, your health care provider may measure the
level of FSH in your blood, to determine if you have primary ovarian
insufficiency in its early stages, or possibly even fully developed Premature
Ovarian Failure. Remember that FSH signals the ovaries to make estrogen. If the
ovaries are not working properly, as is the case in POF, the level of FSH in the
blood increases. A higher level of FSH in the blood is a strong sign of
Premature Ovarian Failure. But, irregular periods alone are not a sure sign that
you have Premature Ovarian Failure—research shows that fewer than 10 percent
of women who have irregular or skipped periods have high FSH levels and
Premature Ovarian Failure.
To
do an FSH test, your health care provider will collect some of your blood and
send it to a laboratory. At the lab, a technician will check the level of FSH.
If the level of FSH is in the menopausal range, it is likely that you have
Premature Ovarian Failure.
Are
there treatments for the symptoms of
Premature Ovarian Failure?
Currently,
no proven treatment will restore normal function to a woman’s ovaries. But,
health care providers can suggest treatments for some of the symptoms of POF.
One
of the most common treatments for women with POF is hormone replacement
therapy (HRT). In women with POF, HRT gives their bodies the estrogen and
other hormones that their ovaries are not making. Replacing these hormones
causes a woman with POF to start having regular periods again. In addition, HRT
may help women with POF lower their risk for the bone disease osteoporosis.
HRT
is usually a combination of the hormones estrogen and progesterone (or the
man-made form of progesterone, called progestin). Women can take the therapy as
a pill, or they can wear a patch that sticks to their skin to get the hormones
into their bodies. Many health care providers suggest the patch for women with
POF because it offers a continuous flow of hormones into the blood stream, which
mimics the way the body naturally releases estrogen. The combination and amount
of hormones used in HRT may differ for different women. If you have questions
about HRT as a treatment for POF, talk to your health care provider.
Most
health care providers suggest that women with POF take HRT until they are 50
years old. After that time, women should talk with their health care provider
about stopping HRT because of risks associated with older women taking the
therapy after menopause.
Current
research is also looking into the benefits of replacing the hormone testosterone
to prevent bone loss in women with POF. Most people think of men’s health when
they hear the word testosterone, but women’s bodies also make testosterone, at
a level about one-seventh that of men. Testosterone helps to maintain muscle and
bone mass, and may be related to a woman’s sex drive. The ovaries make
testosterone, and its level is lower in women with POF. But, unlike estrogen and
progesterone, testosterone is not usually replaced as part of HRT. A clinical
trial is now underway to see if raising the level of testosterone in women with
POF to that found in a woman with healthy ovaries can slow or stop bone loss.
The results of this study could benefit not only women with POF, but also other
young women who are at risk for osteoporosis.
Is
HRT safe for me to take if I have
Premature Ovarian Failure?
Most
health care providers believe that HRT replaces what your body should be making
naturally as a young woman, and that your body needs these hormones to function
normally. HRT taken by women with POF is very different from the hormone therapy
that is often taken by women who are going through or have already gone through
natural menopause.
Recently,
a study found that older women, who had gone through normal menopause, were at
increased risk for certain health conditions when they took a certain type of
hormone therapy for long periods of time. The study was part of the Women’s
Health Initiative, a large, multi-center study that involved more than 161,000
postmenopausal women in their fifties, sixties, and seventies. The researchers
found that these women, who went through natural menopause at the expected age,
were at greater risk for stroke, blood clots, heart disease, heart attacks, and
breast cancer after taking a specific type of hormone therapy for more than five
years.
These
results do not apply to young women taking HRT; specifically, these results
don’t apply to young women with POF. Women in the study mentioned above were
between the ages of 50 and 79 when the study began and had gone through
menopause at the normally expected time; their bodies would not normally be
making high levels of hormones. The type of therapy taken by women in the
Women’s Health Initiative study could be called hormone extension
therapy, rather than hormone replacement therapy, as is often reported.
These women took the hormones beyond the time that the hormones would naturally
be present. Women with POF get hormone replacement therapy; that is, the HRT is
providing something their bodies would normally be making, if they didn’t have
POF.
The
type and amount of HRT prescribed to women with POF is different from the
hormone therapy taken by women in the Women’s Health Initiative study. For
example, women with POF usually take full-dose estrogen replacement
therapy, meaning the amount of estrogen is nearer or equal to the level normally
found in a young healthy woman, whose ovaries are working properly, before
menopause. Hormone therapy for women who have already gone through menopause is
a much lower dose. And, women with POF typically use a patch to deliver the
hormone estrogen, but take a pill that provides progestin. This regimen is
different than the one used in the Women’s Health Initiative, which had women
take a pill that contained both estrogen and progestin.
Talk
to your health care provider if you have questions about HRT as a treatment for
POF. He or she can explain the benefits and risks of HRT for your specific
situation as a young woman. It is important to remember that young women with
POF differ from older menopausal women in many significant ways. Your health
care provider should consider these issues when deciding on the best treatment
for you.
How
will having
Premature Ovarian Failure
affect my overall health?
Because
of lower hormone levels that result from POF, you are at greater risk for a
number of health conditions. These conditions, and what you can do to stay
healthy, are described below.
Osteoporosis
Osteoporosis
(pronounced OWS-tee-oh-pour-oh-siss) is a bone disorder that decreases bone
strength and increases the risk for breaks and fractures.
Estrogen
helps to conserve calcium and other minerals in bones and protects against
bone loss. In POF, the ovaries stop making estrogen, which can cause women
to lose bone density, or bone strength, one of the major factors leading to
osteoporosis.
Even
though osteoporosis is more common in people ages 50 and above, women with
POF may experience the condition at a much younger age.
Are
there ways to prevent or treat bone conditions in women with POF?
To
protect against bone loss, the National Osteoporosis Foundation1
recommends that women who are at risk for osteoporosis:
Get
at least 1200 mg of calcium in their diets every day. If it is not possible
to get this amount through diet, take a calcium supplement.
Get
between 400 IU and 800 IU of vitamin D, which helps the body absorb calcium,
every day.
Get
regular, weight-bearing and muscle-building physical activity.
Weight-bearing physical activity, such as walking, will help build bone
strength. Activities like yoga or tai chi help build muscle strength and
improve flexibility.
An
adequate level of estrogen in the body is an important factor in preventing bone
loss that may lead to osteoporosis. The strategies listed here may slow bone
loss, but none of them will prevent bone loss entirely.
Low
thyroid function
This
problem is also called hypothyroidism (pronounced high-poe-THIGH-royd-iz-em).
The
thyroid is a gland, like the ovary, adrenal, and pituitary glands. It makes
and releases hormones. Specifically, the thyroid makes hormones that control
the body’s metabolism and energy level. Low levels of the hormones made by
the thyroid can affect metabolism, and can cause a woman to have very low
energy.
Symptoms
include a slow down in the body’s normal rate of functioning, which can
lead to mental and physical sluggishness. Cold feet are also a feature of
low thyroid function.
A
recent study found that 27.0 percent of women with POF also had low thyroid
function. In the general population, only two percent of all people (both
men and women) have low thyroid function.
Are
there ways to prevent or treat low thyroid function in women with POF?
Replacing
the hormone that the thyroid is not making enough of treats this problem.
Usually, you can take a pill to replace the hormone.
Addison’s
disease
Addison’s
disease is an autoimmune disorder, meaning the body’s immune cells, which
normally protect the body from invading cells and microbes, attack the
adrenal glands, part of the endocrine system located above the kidneys. The
adrenal glands produce hormones that regulate the body’s response to
stress and its handling of salt.
Addison’s
disease is also called primary autoimmune adrenal insufficiency.
Recent
studies suggest that 3.2 percent of women with POF also have Addison’s
disease, making them much more likely than members of the general population
to develop the disease.
Symptoms
of Addison’s disease include loss of appetite, weight loss, dizziness when
standing, and fatigue. In later stages of Addison’s disease, salt craving,
low blood pressure, and darkening of the skin may occur.
Current
research indicates that an adrenal antibody test is the most
effective way to detect Addison’s disease in women with POF. If the
results of this test are positive, a health care provider may order a second
test, called an ACTH stimulation test, to confirm the diagnosis. Both
tests involve collecting blood samples.
Are
there ways to prevent or treat Addison’s disease in women with POF?
While
there is currently no way to prevent Addison’s disease, the best way to treat
it is to find out whether you have it. You can easily manage the condition with
the help of your health care provider, by taking medication that replaces the
hormones your adrenal glands are not making. If left untreated, however, the
disease can be life threatening because the body can’t respond properly to
stressful events, such as severe illness, injury, or surgery.
Researchers
now recommend that health care providers screen all women who have confirmed POF
for Addison’s disease using the adrenal antibody test, although such screening
is not yet standard practice. If women with undetected Addison’s disease
undergo an exceptional physical stress, such as surgery or a car accident, they
are at risk for an “adrenal crisis,” a situation that can lead to shock and
even death. Therefore, screening for the disease is especially important before
a woman with POF has surgery or undergoes other known physical stresses.
Heart
disease
While
it is very rare for a young woman with POF to develop heart disease, certain
factors related to the disorder might increase her chances of developing
heart disease later in life.
Lower
levels of estrogen in POF can lead to higher levels of low-density
lipoprotein (LDL) cholesterol. LDL is known as “bad” cholesterol because
it is the main source of the buildup and blockage in arteries that can lead
to heart attacks.
Lower
levels of estrogen in POF can also lead to lower levels of high-density
lipoprotein (HDL) cholesterol, known as “good” cholesterol because it
helps prevent buildup and blockage in the arteries.
After
some time, buildup of cholesterol in the arteries can cause “hardening of
the arteries,” which means that the blood flow to the heart is slowed down
or blocked. Blood carries oxygen to the heart. If the heart can’t get
enough oxygen, a person may have chest pains. If the blood supply to part of
the heart is cut off completely, because of blockage, the result is a heart
attack.
Are
there ways to prevent heart disease in women with POF?
Getting
adequate estrogen therapy may help guard against heart disease. Estrogen helps
the body by:
Keeping
the lining of the arteries healthy
Relaxing
muscles that control arteries to allow better blood flow to tissues
Normalizing
LDL and HDL levels to decrease cholesterol build up in the arteries that
could lead to blockage Maintaining a healthy body weight and getting regular
physical activity are important in reducing the risk of heart disease. These
factors can affect your cholesterol level, which, in turn, can affect your
risk for heart disease. Other risk factors for heart disease include:
Cigarette
smoking
High
blood pressure (defined as 140/90 mm/Hg or higher, or being on blood
pressure medication)
High
blood cholesterol
Family
history of heart disease
Age:
women—55 years or older
Talk
to your health care provider about heart disease to determine what steps, if
any, you should take to lower your risk. For information on heart disease and
how to lower your risk of heart disease, see the Where
can I get more information about POF? section of this booklet.
Are
there other health concerns for women who have POF?
Among
women with POF, studies show that 13.8 percent of women with a family
history of POF, and 2.1 percent of women without a family history of POF may
also have a mild form of Fragile X syndrome.
Fragile
X syndrome is a genetic condition that arises because of an error in a
single gene. In women with an affected gene, the symptoms can range from
none at all, to learning disabilities and problems with math, to a slightly
higher risk of anxiety disorder. Women who have an affected gene may pass it
on to their children, who may experience learning disabilities and other
problems as a result.
But,
simply having POF is not a sign of mild Fragile X syndrome. You must have
other characteristics in addition to POF, such as a family history of
unexplained mental retardation, for your health care provider to suspect the
genetic error. If you do not have such a family history, this problem is
likely not an issue for you.
If
you have no family history of unexplained mental retardation, then it is
unlikely that you have this genetic error, and it is probably unnecessary
for you to be screened for the condition. If you do have a history of
unexplained mental retardation in your family, and you have POF, you may
want to be screened for the genetic error associated with Fragile X
syndrome. Your health care provider can give you more information about
screening, should he or she feel it is necessary.
For
more information about Fragile X syndrome, talk to your health care
provider, or contact the NICHD
Information Resource Center at 1-800-370-2943.
Does
having POF mean that I’ll be infertile or unable to have children?
If
you have POF, it will likely be very difficult for you to become pregnant
because your ovaries aren’t working correctly. At this time, there is no
proven medical treatment that improves a woman’s ability to have a baby
naturally if she has POF.
There
is a chance that you will become pregnant without fertility treatment. Between 5
percent and 10 percent of women with POF do become pregnant, even though they
have not had fertility treatment. Sometimes pregnancy can occur decades after
the initial diagnosis. Researchers cannot explain why some women with POF get
pregnant, while others do not.
Because
pregnancy is still possible for women who have POF, those who do not want to
become pregnant should take steps to prevent pregnancy. In some women with POF,
oral contraception may not be as effective for pregnancy prevention as it is in
women who don’t have POF. In some cases, using a “barrier” method of
contraception, such as a diaphragm or a condom, may be a better option for women
with POF who don’t want to become pregnant. Discuss your contraception needs
with your health care provider, if you have POF and don’t want to become
pregnant.
If
you have POF and want to become pregnant, you and your family have some options,
explained below. You should also know, however, that some medical therapies for
infertility have been proven ineffective, through randomized clinical
trials. These therapies include high-dose estrogen therapy, gonadotropin-releasing
hormone (GnRH) agonist therapy, corticosteroid therapy, high-dose GnRH therapy,
and treatment with danocrine. Health care providers recommend avoiding unproven
fertility treatments because such methods may actually reduce your chances of
getting pregnant naturally.
A
special note about infertility associated with POF
Many
women involved in POF support groups reported that, when they were diagnosed
with POF, they felt a sense of loss or grief, not unlike the sadness associated
with the death of a loved one. Others reported that they felt guilty about not
trying to have children earlier in their lives. They noted that the diagnosis
also affected their partners, spouses, and families. For women with POF and
their families, then, emotional support may be as important as medical treatment
for dealing with POF.
Health care providers who care for women with POF often have to reassure their
patients that these emotional responses are perfectly natural reactions to the
news of POF. Some health care providers suggest taking time to deal with the
diagnosis and the emotions that surround it, before making any decisions about
having a family (see The
Art of Listening for more information).
Many providers recommend that women with POF and their families work with a
“professional listener” to help deal with the powerful and sometimes painful
emotions associated with this diagnosis. A social worker, a psychologist, a
psychiatrist, or another mental health professional can work with a woman
individually, together with a spouse, partner, or a family member, or in some
combination of these arrangements. For information on finding a professional
listener, talk to your health care provider, or go to the Where
can I go for more information about POF? section of this booklet.
Many women in support group settings reported that talking to other women who
had POF was helpful in coming to terms with their diagnosis. Many hospitals and
health clinics offer support groups for women and families affected by POF. To
learn more about support organizations, go to the Where
can I go for more information about POF? section of this booklet.
What
are my options for having a child?
Families
affected by POF do have options for having a child. As mentioned earlier, avoid
unproven fertility treatments and treatments that have been proven ineffective
because such methods may actually reduce your chances of getting pregnant
naturally.
Adopting a child is one option for starting a family if you have POF. Adoption
can be one of the most rewarding experiences of a lifetime; but the process is
not without risks. Many health care providers recommend that families
considering adoption learn about the process, its benefits and risks, and its
legal aspects, in addition to the possible emotional effects, before making a
decision. For more information on adoption and adoption resources, go to the Where
can I go for more information about POF? section of this booklet.
A certain type of assisted reproductive technology (ART), known as egg donation,
may also be an option for having a child. In POF, the problem is in producing
healthy eggs; the condition does not affect a woman’s uterus, which means she
may be able to carry a child. Egg donation makes it possible to combine donor
eggs and sperm in a laboratory, and then place the resulting embryos into the
uterus of a woman who has POF.
All forms of ART are
complex, and each carries its own benefits and risks, some of them serious.
Because few insurance companies currently provide coverage for this procedure,
families may have to cover the entire cost of the process. And, many families
have to try ART several times before it is successful. The Centers for Disease
Control and Prevention (CDC) provides statistics on success rates of ART
procedures based on different factors. Go to the Where
can I go for more information on POF? section of this booklet for
information on how to obtain a copy of the CDC report.
If you and your family are considering ART, talking with a health care provider
and/or a fertility specialist about the risks and benefits may help you make
your final decision. The Where
can I go for more information on POF? section provides information on how to
find a fertility specialist and lists resources on ART.
In addition, researchers are actively working to develop methods that improve
fertility in women with POF and other conditions. As such methods and treatments
improve, women with POF and their families may have more options for having
children naturally.
The
Art of Listening
NICHD
researcher Larry Nelson, M.D., has been caring for women who
have POF for decades. As the head of the NICHD’s Unit on
Gynecologic Endocrinology, Dr. Nelson is working to understand
POF, and to help women and families affected by it.
“Many women feel a sense of urgency to act right away when
they get their diagnosis,” Dr. Nelson explains. But, based on
his years of experience, he suggests a slower, more deliberate
plan to his patients for dealing with infertility related to POF.
First, he recommends that women allow themselves time to feel
and deal with the emotions that may accompany a diagnosis of POF.
He explains that getting emotionally healthy, no matter how long
it takes, is the best way to prepare for the tough decisions
that may be down the road. Next, Dr. Nelson suggests that the
women strengthen their relationships with their spouses,
partners, and families. He feels that the help of a professional
listener is very important in building strong, close
relationships after a POF diagnosis.
The options for having a child if a woman has POF are risky,
expensive, and often emotionally draining, he adds. He usually
tells his patients and their families to take some time to
really focus so they can make clear, informed decisions. After
taking some time, families may decide that options for having a
child simply aren’t right for them, he explains; or, they may
decide to pursue the options for having a child.
Dr. Nelson received the 2001 Art of Listening Award from the
Genetic Alliance for his commitment and dedication to caring for
women with POF. The Genetic Alliance is a national non-profit
organization that strives to help those affected by genetic
disorders. To contact the Unit on Gynecologic Endocrinology,
call 1-877-206-0911.
What
are researchers doing to learn more about POF?
Currently,
the NICHD is conducting and sponsoring a number of studies on POF:
Some
researchers are exploring whether a low dose of a certain steroid can treat
POF in cases caused by an autoimmune disorder. The steroid, called
prednisone, decreases the function of the body’s immune system, which is
thought to be attacking the ovary follicles in some women with POF.
Researchers
are trying to determine the best combination and dosage of HRT for treating
POF. Some work is trying to learn whether adding testosterone to a woman’s
HRT can help to prevent bone loss. Other studies are trying to find the
amount of estrogen and progestin that best treats POF without causing too
many side effects.
Other
research focuses on what happens in an ovary that is working normally. This
information may help scientists develop a test for early detection of POF.
Clinical
trials to explore these topics are already underway. To find out more about
these studies, contact the NICHD’s Unit on Gynecologic Endocrinology, at 1-877-206-0911.
You can also learn more about all studies on POF by going to http://clinicaltrials.gov,
and doing a search for “premature ovarian failure.” Or, you can call the NIH
Patient Recruitment and Public Liaison Office at 1-800-411-1222.
In addition to these studies, the NICHD has a Reproductive Medicine Gynecology
Program in its Reproductive Sciences Branch that supports research on women’s
health conditions that aren’t cancerous, including POF. In 1998, the NICHD
joined other Institutes at the NIH in setting up 12 Women’s Reproductive
Health Research Career Development Centers. These Centers support obstetricians
and gynecologists in becoming researchers, so that they can study topics on
women’s health. Eight additional Centers, started in 1999, will allow this
vital research to continue until scientists know the causes and treatments for
POF and other reproductive diseases.
The NICHD’s Reproductive Sciences Branch also has other programs that support
research on POF, and on other topics that affect women’s health. The
Specialized Cooperative Centers Program in Reproductive Research (SCCPRR),
established in the late 1990s, relies on multidisciplinary approaches to
research on reproductive health topics. SCCPRR has a number of basic,
translational, and clinical scientific studies in progress at 14 sites around
the country that are aimed at finding the cause of POF, including genetics and
the factors that cause follicle depletion and dysfunction.
What
is Polycystic Ovarian Syndrome (PCOS)?
PCOS
is a health problem that can affect a woman’s menstrual cycle, fertility,
hormones, insulin production, heart, blood vessels, and appearance. Women with
PCOS have these characteristics:
high
levels of male hormones, also called androgens
an
irregular or no menstrual cycle
may
or may not have many small cysts in their ovaries. Cysts are fluid-filled
sacs.
PCOS
is the most common hormonal reproductive problem in women of childbearing age.
How
many women have Polycystic Ovarian Syndrome (PCOS)?
An
estimated five to 10 percent of women of childbearing age have PCOS.
What
causes Polycystic Ovarian Syndrome (PCOS)?
No
one knows the exact cause of PCOS. Women with PCOS frequently have a mother or
sister with PCOS. But there is not yet enough evidence to say there is a genetic
link to this disorder. Many women with PCOS have a weight problem. So
researchers are looking at the relationship between PCOS and the body’s
ability to make insulin. Insulin is a hormone that regulates the change of
sugar, starches, and other food into energy for the body’s use or for storage.
Since some women with PCOS make too much insulin, it’s possible that the
ovaries react by making too many male hormones, called androgens. This can lead
to acne, excessive hair growth, weight gain, and ovulation problems.
Why
do women with Polycystic Ovarian Syndrome (PCOS) have trouble with their
menstrual cycle?
The
ovaries are two small organs, one on each side of a woman's uterus. A woman's
ovaries have follicles, which are tiny sacs filled with liquid that hold the
eggs. These sacs are also called cysts. Each month about 20 eggs start to
mature, but usually only one becomes dominant. As the one egg grows, the
follicle accumulates fluid in it. When that egg matures, the follicle breaks
open to release the egg so it can travel through the fallopian tube for
fertilization. When the single egg leaves the follicle, ovulation takes place.
In
women with PCOS, the ovary doesn't make all of the hormones it needs for any of
the eggs to fully mature. They may start to grow and accumulate fluid. But no
one egg becomes large enough. Instead, some may remain as cysts. Since no egg
matures or is released, ovulation does not occur and the hormone progesterone is
not made. Without progesterone, a woman’s menstrual cycle is irregular or
absent. Also, the cysts produce male hormones, which continue to prevent
ovulation.
What
are the symptoms of Polycystic Ovarian Syndrome (PCOS)?
These
are some of the symptoms of PCOS:
infrequent
menstrual periods, no menstrual periods, and/or irregular bleeding
infertility
or inability to get pregnant because of not ovulating
increased
growth of hair on the face, chest, stomach, back, thumbs, or toes
acne,
oily skin, or dandruff
pelvic
pain
weight
gain or obesity, usually carrying extra weight around the waist
type
2 diabetes
high
cholesterol
high
blood pressure
male-pattern
baldness or thinning hair
patches
of thickened and dark brown or black skin on the neck, arms, breasts, or
thighs
skin
tags, or tiny excess flaps of skin in the armpits or neck area
sleep
apnea―excessive snoring and breathing stops at times while asleep
What
tests are used to diagnose Polycystic Ovarian Syndrome (PCOS)?
There
is no single test to diagnose PCOS. Your doctor will take a medical history,
perform a physical exam—possibly including an ultrasound, check your hormone
levels, and measure glucose, or sugar levels, in the blood. If you are producing
too many male hormones, the doctor will make sure it’s from PCOS. At the
physical exam the doctor will want to evaluate the areas of increased hair
growth, so try to allow the natural hair growth for a few days before the visit.
During a pelvic exam, the ovaries may be enlarged or swollen by the increased
number of small cysts. This can be seen more easily by vaginal ultrasound, or
screening, to examine the ovaries for cysts and the endometrium. The endometrium
is the lining of the uterus. The uterine lining may become thicker if there has
not been a regular period.
How
is Polycystic Ovarian Syndrome (PCOS) treated?
Because
there is no cure for PCOS, it needs to be managed to prevent problems.
Treatments are based on the symptoms each patient is having and whether she
wants to conceive or needs contraception. Below are descriptions of treatments
used for PCOS.
Birth
control pills.
For women who don’t want to become pregnant, birth control pills can regulate
menstrual cycles, reduce male hormone levels, and help to clear acne. However,
the birth control pill does not cure PCOS. The menstrual cycle will become
abnormal again if the pill is stopped. Women may also think about taking a pill
that only has progesterone, like Provera, to regulate the menstrual cycle and
prevent endometrial problems. But progesterone alone does not help reduce acne
and hair growth.
Diabetes
Medications. The
medicine, Metformin, also called Glucophage, which is used to treat type 2
diabetes, also helps with PCOS symptoms. Metformin affects the way insulin
regulates glucose and decreases the testosterone production. Abnormal hair
growth will slow down and ovulation may return after a few months of use. These
medications will not cause a person to become diabetic.
Fertility
Medications. The
main fertility problem for women with PCOS is the lack of ovulation. Even so,
her husband’s sperm count should be checked and her tubes checked to make sure
they are open before fertility medications are used. Clomiphene (pills) and
Gonadotropins (shots) can be used to stimulate the ovary to ovulate. PCOS
patients are at increased risk for multiple births when using these medications.
In vitro Fertilization (IVF) is sometimes recommended to control the chance of
having triplets or more. Metformin can be taken with fertility medications and
helps to make PCOS women ovulate on lower doses of medication.
Medicine
for increased hair growth or extra male hormones.
If a woman is not trying to get pregnant there are some other medicines that may
reduce hair growth. Spironolactone is a blood pressure medicine that has been
shown to decrease the male hormone’s effect on hair. Propecia, a medicine
taken by men for hair loss, is another medication that blocks this effect. Both
of these medicines can affect the development of a male fetus and should not be
taken if pregnancy is possible. Other non-medical treatments such as
electrolysis or laser hair removal are effective at getting rid of hair. A woman
with PCOS can also take hormonal treatment to keep new hair from growing.
Surgery.
Although it is not recommended as the first course of treatment, surgery called
ovarian drilling is available to induce ovulation. The doctor makes a very small
incision above or below the navel, and inserts a small instrument that acts like
a telescope into the abdomen. This is called laparoscopy. The doctor then
punctures the ovary with a small needle carrying an electric current to destroy
a small portion of the ovary. This procedure carries a risk of developing scar
tissue on the ovary. This surgery can lower male hormone levels and help with
ovulation. But these effects may only last a few months. This treatment doesn't
help with increased hair growth and loss of scalp hair.
A
healthy weight.
Maintaining a healthy weight is another way women can help manage PCOS. Since
obesity is common with PCOS, a healthy diet and physical activity help maintain
a healthy weight, which will help the body lower glucose levels, use insulin
more efficiently, and may help restore a normal period. Even loss of 10% of her
body weight can help make a woman's cycle more regular.
How
does Polycystic Ovarian Syndrome (PCOS) affect a woman while pregnant?
There
appears to be a higher rate of miscarriage, gestational diabetes,
pregnancy-induced high blood pressure, and premature delivery in women with PCOS.
Researchers are studying how the medicine, metformin, prevents or reduces the
chances of having these problems while pregnant, in addition to looking at how
the drug lowers male hormone levels and limits weight gain in women who are
obese when they get pregnant.
No
one yet knows if metformin is safe for pregnant women. Because the drug crosses
the placenta, doctors are concerned that the baby could be affected by the drug.
Research is ongoing.
Does
Polycystic Ovarian Syndrome (PCOS) put women at risk for other conditions?
Women
with PCOS can be at an increased risk for developing several other conditions.
Irregular menstrual periods and the absence of ovulation cause women to produce
the hormone estrogen, but not the hormone progesterone. Without progesterone,
which causes the endometrium to shed each month as a menstrual period, the
endometrium becomes thick, which can cause heavy bleeding or irregular bleeding.
Eventually, this can lead to endometrial hyperplasia or cancer. Women with PCOS
are also at higher risk for diabetes, high cholesterol, high blood pressure, and
heart disease. Getting the symptoms under control at an earlier age may help to
reduce this risk.
Does
Polycystic Ovarian Syndrome (PCOS) change at menopause?
Researchers
are looking at how male hormone levels change as women with PCOS grow older.
They think that as women reach menopause, ovarian function changes and the
menstrual cycle may become more normal. But even with falling male hormone
levels, excessive hair growth continues, and male pattern baldness or thinning
hair gets worse after menopause.
For
More Information...
You
can find out more about PCOS by contacting the National Women's Health
Information Center (NWHIC) at 800-994-WOMAN (9662) or the following
organizations:
National
Instituteof Child Healthand Human Development (NICHD), NIH, HHS
Phone:
(800)
370-2943
Internet Address: http://www.nichd.nih.gov/womenshealth
American
Society for Reproductive Medicine (ASRM)
Phone:
(205)
978-5000
Internet Address: http://www.asrm.org
InterNational
Council on Infertility Information Dissemination, Inc. (INCIID)
Phone:
(703)
379-9178
Internet Address: http://www.inciid.org
PolyCystic
Ovarian Syndrome Association, Inc. (PCOSA)
Phone:
(877)
775-7267
Internet Address: http://www.pcosupport.org
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Health
care providers use the term Premature Ovarian Failure (POF) to describe a stop
in normal functioning of the ovaries in a woman under the age of 40. Many women
naturally experience a decline in fertility at age 40; this age may also mark
the beginning of irregularities in their menstrual cycles that signal the onset
of menopause. For women with Premature Ovarian Failure, the fertility decline
and menstrual irregularities occur before age 40, sometimes even in the teens.
Some health care providers also use the term primary ovarian insufficiency
to describe this condition.
What
Happens Differently in Premature Ovarian Failure?
A
woman with follicle dysfunction still has follicles in her ovaries, but for
unknown reasons they are not working properly. Currently, scientists do not have
a safe and effective way to make follicles start working normally again.
Although they have yet to identify all the causes of follicle dysfunction, some
known causes include:
One
of the most common signs of Premature Ovarian Failure is having irregular
periods. Women should pay close attention to their menstrual cycles, so that
they can alert their health care provider when changes occur in their periods.
Currently,
no proven treatment will restore normal function to a woman’s ovaries. But,
health care providers can suggest treatments for some of the symptoms of POF.
Most
health care providers believe that HRT replaces what your body should be making
naturally as a young woman, and that your body needs these hormones to function
normally. HRT taken by women with POF is very different from the hormone therapy
that is often taken by women who are going through or have already gone through
natural menopause.
The
type and amount of HRT prescribed to women with POF is different from the
hormone therapy taken by women in the Women’s Health Initiative study. For
example, women with POF usually take full-dose estrogen replacement
therapy, meaning the amount of estrogen is nearer or equal to the level normally
found in a young healthy woman, whose ovaries are working properly, before
menopause. Hormone therapy for women who have already gone through menopause is
a much lower dose. And, women with POF typically use a patch to deliver the
hormone estrogen, but take a pill that provides progestin. This regimen is
different than the one used in the Women’s Health Initiative, which had women
take a pill that contained both estrogen and progestin.
Because
of lower hormone levels that result from POF, you are at greater risk for a
number of health conditions. These conditions, and what you can do to stay
healthy, are described below.
While
there is currently no way to prevent Addison’s disease, the best way to treat
it is to find out whether you have it. You can easily manage the condition with
the help of your health care provider, by taking medication that replaces the
hormones your adrenal glands are not making. If left untreated, however, the
disease can be life threatening because the body can’t respond properly to
stressful events, such as severe illness, injury, or surgery.
If
you have POF, it will likely be very difficult for you to become pregnant
because your ovaries aren’t working correctly. At this time, there is no
proven medical treatment that improves a woman’s ability to have a baby
naturally if she has POF.
Many
women involved in POF support groups reported that, when they were diagnosed
with POF, they felt a sense of loss or grief, not unlike the sadness associated
with the death of a loved one. Others reported that they felt guilty about not
trying to have children earlier in their lives. They noted that the diagnosis
also affected their partners, spouses, and families. For women with POF and
their families, then, emotional support may be as important as medical treatment
for dealing with POF.
Families
affected by POF do have options for having a child. As mentioned earlier, avoid
unproven fertility treatments and treatments that have been proven ineffective
because such methods may actually reduce your chances of getting pregnant
naturally.
All forms of ART are
complex, and each carries its own benefits and risks, some of them serious.
Because few insurance companies currently provide coverage for this procedure,
families may have to cover the entire cost of the process. And, many families
have to try ART several times before it is successful. The Centers for Disease
Control and Prevention (CDC) provides statistics on success rates of ART
procedures based on different factors. Go to the 
Some
researchers are exploring whether a low dose of a certain steroid can treat
POF in cases caused by an autoimmune disorder. The steroid, called
prednisone, decreases the function of the body’s immune system, which is
thought to be attacking the ovary follicles in some women with POF.
