Do I Have Premature Ovarian Failure (POF)?

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.

For more information on this or other NICHD clinical trials related to POF, contact the Unit on Gynecologic Endocrinology, at 1-877-206-0991, or visit the Unit’s Web site at http://pof.nichd.nih.gov.

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.

Go to the Where can I go for more information on POF? section of this booklet for more information about the Women’s Health Initiative.

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.

¹ A Physician’s Guide to Prevention and Treatment of Osteoporosis. National Osteoporosis Foundation, Washington, DC; 1998, 2000.

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 disease²

• 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.
  
  

²Adapted from High Blood Cholesterol: What you need to know. National Cholesterol Education Program, NHLBI, 2001.

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.
  
  
• If you have a confirmed diagnosis of POF, you should talk to your health care provider about Fragile X syndrome and tests to find abnormalities in the Fragile X gene.
  
  
• 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.

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.

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.

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