Primary Ovarian Insufficiency (POI)

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female gender symbolPrimary 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. This means that the ovaries are not working normally.

What is primary ovarian insufficiency (POI)?

POI is when the ovaries are not working normally. The hormones that are naturally made by the ovaries (estrogen, progesterone, and testosterone) are no longer being produced in normal amounts, and the ovaries don’t release eggs 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
  • Trouble sleeping

The most common symptom is 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 and 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)?

Yes. It’s normal to feel angry, sad, and/or have feelings of loss, but 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 by doing a blood test to check the level of FSH (Follicle Stimulating Hormone) in your blood. This blood test is usually repeated before the diagnosis can be made. High levels of FSH usually mean that you have POI. Your HCP may also check other hormones including an “AMH” (Anti-Mullerian Hormone) level and genetic tests to see if there is a medical reason for the POI. AMH is made by the follicles (within the ovaries). High levels of AMH usually mean there are healthy eggs in the ovaries. Make sure 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, it 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 a reason for POI (Turner Syndrome, Fragile X mutation, or radiation therapy). In general, medical tests can’t tell for sure whether POI will be permanent; but we do know that 5-10% of women with POI will ovulate every once in a while, which makes pregnancy a possibility.

How is POI treated?

The treatment for POI is to replace the hormones that your body is not making. 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.

There are many different types of HRT, including the hormonal patch, the vaginal ring, hormone pills, or shots. The hormone patch or “transdermal estrogen” provides estrogen levels similar to what the ovaries normally make. The patch releases estrogen and is applied to the skin once or twice a week. Progesterone can be taken as a pill or as part of a patch. It’s taken 10-14 days a month. Estrogen comes in pills just for HRT or in birth control pills, but the dose may be higher than needed just for replacement. With birth control pills or vaginal rings, 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 is very low. A gynecologist or a reproductive endocrinologist specializing in fertility can help.

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 fertility treatments to help you have a baby. He or she will be able to give you advice based on your specific situation.

In-Vitro Fertilization (IVF) with donor eggs: IVF (with donor eggs) is a procedure that involves a donation of eggs 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). Women with Turner’s have special risks with carrying a pregnancy so often not a good choice. Since the success rate depends on many factors, it’s important to talk to a fertility expert when the time is right.

Oocyte cryopreservation: Freezing of young women’s eggs before radiation or chemotherapy may be a possible option.

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.

There is medical treatment for POI so your hormone levels can return to normal. There are also options available to you if you decide to have children, and new research may offer even more alternatives over the next few years. You can live a healthy life with POI.