Premature Ovarian Insufficiency (POI)

Premature Ovarian Insufficiency, or POI (previously Premature Ovarian Failure, or POF) affects approximately 1 out of every 1000 women between 15-29 years of age. If you have been diagnosed with POI, you feel alone and different. It might help you to know that there are thousands of other young women who have POI, too. It can also help you feel better to know that doctors and scientists are also doing research to learn more about POI. This guide was created to answer your questions as well as offer information about fertility options.

What is premature ovarian insufficiency (POI)?

Most girls who have POI report that they went to their health care provider when they stopped having periods.

Girls with POI may have one or more of the following symptoms:

• Lack of breast development during puberty
• Lack of menstrual periods
• Decrease in breast size
• Hot flashes
• Vaginal dryness
• Mood swings
• Insomnia (not being able to sleep)

The two most common symptoms are lack of breast development and lack of menstrual periods.

Is it normal to feel upset when your body doesn't work the way it should?

Yes. If you are diagnosed with POI, you may feel sad, angry, or depressed, and you may have feelings of loss. You may also feel bad because your friends do not have POI. You are most likely going to have these feelings soon after you have been told you have POI. Emotional support from a counselor or therapist may be helpful. It may also be of great help to speak to other teens with POI, so you will know you are not alone.

How is POI diagnosed?

Your doctor can find out if your ovaries are working by doing a simple blood test to check the hormone level, FSH (Follicle Stimulating Hormone). It's usually necessary to repeat the blood test to make sure the first test was correct. High levels of FSH in a blood test usually mean that you have POI. Your health care provider will also check other hormones and genetic tests to see if there is a reason for the POI. Make sure to tell your health care provider about others in your family with POI or other health conditions (autoimmune conditions, endocrine problems, retardation, neurological diseases).

Why is the FSH level high?

In menstruating women, the pituitary gland in the brain can sense if the ovaries are making the right amounts of estrogen. If a woman is not getting her period and there is no estrogen being made, the pituitary gland in the brain will release a hormone called the follicle-stimulating hormone (FSH). This hormone sends a signal to the ovaries telling them to start making estrogen.

Your ovaries should respond to this signal and begin to release estrogen. When the estrogen is released, the pituitary gland then stops sending out FSH and the level of FSH in your blood stream decreases. However, if you have POI, your ovaries can't make normal amounts of estrogen so the amount of FSH in your blood stays very high.

Is POI permanent?

POI can be unpredictable, but it is almost always permanent, especially if your ovaries have not worked for many years or you have a reason for the POI (Turner Syndrome, radiation therapy). In general, medical tests can’t tell for sure whether your POI will be permanent.

How is POI treated?

The treatment for POF is to replace the hormones that your body is no longer making. The name for this type of treatment is called hormone replacement therapy, or HRT. The hormones that need to be replaced are estrogen and progesterone. These hormones are necessary for breast development, menstrual periods, and healthy bones.

There are many different types of HRT. HRT is available as skin patches, pills, vaginal rings, and shots. Skin patches or “transdermal estrogen” provides estrogen levels most like what your ovaries would make. The estrogen patches are applied to the skin once or twice a week. The progesterone is usually a separate pill. Estrogen also comes in pills just for HRT. In addition, birth control pills and the birth control patch and ring can be used for HRT because they contain both estrogen and progesterone although the dose may be higher than needed just for replacement. Rarely women have become pregnant on HRT. You should discuss all the options with your health care provider.

What are the effects of Hormone Replacement Therapy (HRT)?

In approximately 1 to 2 months after you begin hormone replacement therapy, your breasts will likely increase in size if they have not finished growing. You may also start having menstrual periods, cramps, and even PMS symptoms such as mood swings, just like you would if your body was making the progesterone and estrogen.

If you are having any side effects from the HRT, it is important to discuss them with your health care provider. There are more than 25 different types of HRT, and your provider can work with you to find the one that is best for you.

Fertility Issues

Who should I talk to about fertility issues?

The first person you should talk to about fertility issues is your gynecologist or a reproductive endocrinology specialist. If needed, your gynecologist can refer you to a fertility specialist who can discuss your options with you.

What fertility treatment options are available for women with POF?

Fertility treatment is available to help you have a baby. Your gynecologist or reproductive endocrinologist can talk to you about this issue whenever you are ready. He or she will be able to give you advice based on your specific situation.

In-Vitro Fertilization (IVF)- with donor eggs

IVF is a procedure that involves removing another woman's egg from her ovary, fertilizing it with your partner's sperm, and putting that fertilized egg into your uterus. You would then carry and give birth to the baby. This type of fertility treatment is offered to women who have POI (premature ovarian insufficiency) and do not make eggs. Since the success rate depends on many factors, it is important to discuss this with a fertility expert when you are ready to have children.

Adoption

This is an important option for young women who have POI. There are many children who need a home and are adopted by couples who can't have their own children.

If you think you have POI, the best thing to do is to talk to your health care provider since other medical conditions may cause the same or similar symptoms. If you have already been diagnosed with POI and you are taking hormone replacement therapy, it is important to take your medicine as prescribed. Eating right, taking a daily multivitamin with vitamin D, exercising, and getting enough calcium in the food you eat will help protect your bones, while learning more about POI will empower you to be pro-active about your health. You may also want to give this guide about POI to people who are close to you, to help them understand what you are going through.

Remember that there are options available to you if you decide that you want children, and new research may offer even more alternatives over the next few years. You can live a healthy life with POI!