Primary Ovarian Insufficiency (POI)

Primary Ovarian Insufficiency or POI (previously called Premature Ovarian Failure, or POF) affects approximately 1 out of every 1000 teens and adult women between 15-29 years of age.

What is primary ovarian insufficiency (POI)?

POI occurs when the ovaries are not working normally. The hormones that are usually made by the ovaries (estrogen, progesterone, and testosterone) are no longer being produced in normal amounts, and the ovaries don’t release eggs (ovulate) or release them just once in a while.

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

• Lack of breast development during puberty
• Lack of menstrual periods or irregular periods
• Small breasts or decrease in breast size
• Hot flashes
• Lack of normal vaginal discharge
• Mood swings
• Bone loss
• Trouble sleeping

The most common symptom is a lack of menstrual periods.

What causes primary ovarian insufficiency (POI)?

Most of the time, health care providers don’t know the cause of POI. For some young women, POI may be caused by a genetic abnormality (such as Turner syndrome or Fragile X mutation), exposure to certain medicines or radiation for cancer treatment, or an autoimmune disease.

Is it normal to feel upset after being diagnosed with primary ovarian insufficiency (POI)?

Everyone has different feelings, so it is normal to feel angry, sad, and/or have feelings of loss, but it’s also normal to accept your diagnosis as part of your life. It’s important to know that there are treatments for POI. Talking to a counselor or therapist as well as connecting with other teens who have POI can be very helpful.

How is POI diagnosed?

Your health care provider (HCP) can find out if your ovaries are working properly by doing a blood test to check the level of FSH (Follicle Stimulating Hormone) in your blood. This blood test is usually repeated before a diagnosis can be made. High levels of FSH usually mean that you have POI. Your HCP may also check other hormones. such as  AMH (Anti-Mullerian Hormone). and genetic tests to see if there is a medical reason for the POI. It’s important to tell your HCP if you have any family members with POI or other health conditions such as an autoimmune disease, endocrine problems, or a neurological condition.

Why is the FSH level high?

In menstruating women, the pituitary gland in the brain can sense if the ovaries are not making the right amount 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 follicle-stimulating hormone (FSH). This hormone sends a signal to the ovaries to make estrogen and stimulates the growth of a “follicle,” which will later release an egg. When the ovary responds, it also sends a signal to tell the pituitary to stop producing FSH, so the FSH level in the blood decreases.

In young women with POI, the ovaries do not function normally, so they cannot respond to the FSH in the normal way. Thus, there is no signal to the pituitary to stop its production of FSH. Instead, the pituitary keeps trying to get the ovaries to respond by producing more and more FSH. Thus, in women with POI, the level is FSH is high.

Is POI permanent?

POI can be unpredictable, but it’s usually permanent, especially if the ovaries haven’t worked for a long time or there’s an identified reason for POI (Turner Syndrome, Fragile X mutation, or chemotherapy/radiation therapy). In general, medical tests can’t tell for sure whether POI will be permanent; we do know that 5-10% of women with POI will ovulate every once in a while, which makes pregnancy a rare possibility.

How is POI treated?

The treatment for POI is to replace the hormones that your body isn’t making enough of. 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 needed for breast development, menstrual periods, and healthy bones. These hormones are also important for your cardiovascular system (heart, blood vessels) and your brain (neurologic system).

There are many different types of HRT. Estrogen can be replaced by taking pills or by wearing a patch on your skin. The hormone patch (also called “transdermal estrogen”) and estrogen pills provide estrogen levels similar to what the ovaries normally make. Pills are taken every day, while the patch is applied to the skin once or twice a week. Progesterone can be taken as a pill, as a vaginal cream, or as part of a combination patch. It’s taken for 10-14 days a month. Estrogen is also in birth control pills, the birth control patch, and the vaginal ring, but the dose may be higher than needed for hormone replacement therapy. With these three options, you take estrogen and progesterone every day. Rarely, women with POI have become pregnant while on HRT.

You should discuss all the treatment options with your health care provider.

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

When you begin hormone replacement therapy, your breasts may feel a little sore and 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 progesterone and estrogen normally.

If you are having any side effects from the HRT, it’s important to tell your health care provider. There are many different types of HRT. Your health care provider can work with you to find the one that’s best for you.

Fertility: When a woman’s ovaries are not making hormones, her chances of ovulating or producing eggs every month are very low. A gynecologist or a reproductive endocrinologist specializing in fertility can help navigate the potential family building options and assess the chance of biological children.

What kinds of fertility treatment options are available for women with POI?

You can talk to your gynecologist or reproductive endocrinologist when you’re ready to learn more about ways to build a family. They will be able to give you advice based on your specific situation.

Some options include:

In-Vitro Fertilization (IVF) with donor eggs: IVF (with donor eggs) is a procedure that involves a donation of egg(s) from another woman. The egg(s) are then fertilized with your partner’s sperm and the fertilized egg(s) is placed into your uterus. You would then carry and deliver the baby. This type of fertility treatment is offered to women who have POI (primary ovarian insufficiency) from unknown causes. Women with Turner’s syndrome have special risks with carrying a pregnancy, so this option is often not a good choice for them. Since the success rate depends on many factors, it’s important to talk to a fertility expert when the time is right.

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’ve already been diagnosed with POI and you are taking hormone replacement therapy, it’s important to take your medicine as prescribed. Eating right, taking a daily multivitamin with vitamin D, exercising, and getting 1300 milligrams of calcium every day will help protect your bones. Learning about POI will empower you to be pro-active about your health. You may also want to give this guide to people who are close to you, to help them understand what you are going through.