Primary ovarian insufficiency

Diagnosis

Most women have few signs of primary ovarian insufficiency, but your health care provider may suspect the condition if you have irregular periods or are having trouble conceiving. Diagnosis usually involves a physical exam, including a pelvic exam. Your provider might ask questions about your menstrual cycle, exposure to toxins, such as chemotherapy or radiation therapy, and previous ovarian surgery.

Your provider might recommend one or more tests to check for:

• Pregnancy. A pregnancy test checks for an unexpected pregnancy if you're of childbearing age and missed a period.
• Hormone levels. Your provider may check the levels of a number of hormones in your blood, including follicle-stimulating hormone (FSH), a type of estrogen called estradiol, and the hormone that stimulates breast milk production (prolactin).
• Chromosome changes or certain genes. You may have a blood test called a karyotype analysis to look for unusual changes in your chromosomes. Your doctor may also check to see if you have a gene associated with fragile X syndrome called FMR1.

Treatment

Most often, treatment for primary ovarian insufficiency focuses on the problems that arise from estrogen deficiency. (1p3) Treatment might include:

• Estrogen therapy. Estrogen therapy can help prevent osteoporosis. It also can relieve hot flashes and other symptoms of low estrogen. You'll likely be prescribed estrogen with the hormone progesterone if you still have your uterus. Adding progesterone protects the lining of your uterus, called the endometrium, from changes that could lead to cancer. These changes may be caused by taking estrogen alone.

  The combination of hormones may make your period come back. It won't restore your ovaries' function. Depending on your health and preference, you might take hormone therapy until around age 50 or 51. That's the average age of natural menopause.

  In older women, long-term estrogen plus progesterone treatment has been linked to a higher risk of heart and blood vessel disease and breast cancer. In young people with primary ovarian insufficiency, the benefits of hormone therapy outweigh the risks.

• Calcium and vitamin D supplements. Both nutrients are key for preventing osteoporosis. And you might not get enough of either in your diet or from sunlight. Your health care team might suggest an X-ray test that measures calcium and other minerals in bones before you start supplements. This is called a bone density test.

  For women ages 19 through 50, experts most often recommend 1,000 milligrams (mg) of calcium a day through food or supplements. The amount increases to 1,200 mg a day for women age 51 and older.

  The ideal daily dose of vitamin D isn't yet clear. A good starting point is 800 to 1,000 international units (IU) a day, through food or supplements. If your blood levels of vitamin D are low, your health care team might suggest higher amounts.

Addressing infertility

No treatment is proven to restore fertility. But some people with primary ovarian insufficiency and their partners try to become pregnant through a procedure called in vitro fertilization. The procedure involves removing eggs from a donor and fertilizing them with sperm. A fertilized egg, called an embryo, is then placed in the uterus.

Lifestyle and home remedies

Learning that you have primary ovarian insufficiency may be emotionally painful. But with proper treatment and self-care, you can expect to lead a healthy life.

• Learn about other ways to have children. If you'd like to add to your family, talk to a health care professional about your options. For instance, you could think about trying in vitro fertilization using donor eggs. Or you could adopt a child.
• Talk with your health care team about the best birth control options. A small percentage of people with primary ovarian insufficiency do become pregnant if they have sex without a condom. If you don't want to become pregnant, think about using birth control.
• Keep your bones strong. Eat a calcium-rich diet. Do weight-bearing exercises such as walking and strength training exercises for your upper body. And don't smoke. Ask your health care team if you need calcium and vitamin D supplements.
• Keep track of your menstrual cycle. If you miss a period while taking hormone therapy that causes you to have a monthly cycle, get a pregnancy test.

Coping and support

If you'd hoped for future pregnancies, you might feel a deep sense of loss after you learn that you have primary ovarian insufficiency. This feeling can happen even if you've already given birth. See a counselor for therapy if you feel it would help you cope.

• Be open with your partner. Talk with and listen to your partner. Share your feelings over this sudden change in your plans for growing your family.
• Explore your options. If you don't have children and want them, or if you want more children, look into other ways to expand your family. You could think about choices such as in vitro fertilization using donor eggs or adoption.
• Get support. It may help to talk with others who are going through a similar challenge. You could gain insights and understanding during a time of confusion and doubt. Ask a member of your health care team about national or local support groups. Or seek an online community as an outlet for your feelings and a source of information. Also think about getting counseling with a therapist. It might help you adjust to your new circumstances and what those could mean for your future.
• Give yourself time. It can take a while to come to terms with having primary ovarian insufficiency. In the meantime, take good care of yourself. Eat well, exercise and get enough rest.

Preparing for your appointment

Your first checkup likely will be with your primary care professional or a gynecologist. If you're seeking treatment for infertility, you might be referred to a specialist in reproductive hormones and improved fertility. This is a doctor called a reproductive endocrinologist.

What you can do

When you make the appointment, ask if there's anything you need to do in advance. For instance, you may need to stop eating for a number of hours before you have a certain test. This is called fasting.

Also make a list of:

• Your symptoms. Include any missed periods and how long you've been missing them.
• Key personal information. Write down major stresses, recent life changes and your family medical history.
• Your health history. It's key to include your reproductive history. This can include information about your birth control use and any pregnancies or breastfeeding. Also note any past surgeries on your ovaries and anytime you might have been exposed to chemicals or radiation.
• All medicines, vitamins or other supplements you take. Include the amounts you take, also called the doses.
• Questions to ask your health care team.

Take a family member or friend along if you can. This person can help you remember all the information that your health care team gives you.

For primary ovarian insufficiency, some questions to ask your health care professional include:

• What's the most likely cause of my irregular periods?
• What other causes might there be?
• What tests do I need?
• What treatments are available? What side effects can I expect?
• How will these treatments affect my sexuality?
• What do you feel is the best course of action for me?
• I have other health conditions. How can I best manage them together?
• Should I see a specialist?
• Do you have printed material I can have? What websites do you recommend?

Feel free to ask other questions as they occur to you during your appointment.

What to expect from your provider

Your health care professional is likely to ask questions, such as:

• When did you start missing periods?
• Do you have hot flashes, vaginal dryness or other symptoms like those of menopause? For how long?
• Have you had ovarian surgery?
• Have you been treated for cancer?
• Do you or any family members have systemic or autoimmune diseases, such as hypothyroidism or lupus?
• Do any members of your family have primary ovarian insufficiency?
• How distressed do your symptoms make you feel?
• Do you feel depressed?
• Have you had trouble with previous pregnancies?