Premature ovarian insufficiency

What are fertility problems in women?

The ovaries are located in the abdomen, to the left and right of the uterus. They contain the supply of egg cells for your entire life. From puberty onwards, one of the immature egg cells (follicles) matures into a mature egg cell each month. If this egg cell is not fertilized, menstruation follows. The supply of egg cells decreases each year. When the supply is depleted, a woman enters menopause. This is usually between ages 45 and 55. If menopause begins before age 40, it is called premature menopause.

Do I have an increased risk of premature menopause?

Every woman, including women who have never had cancer, can experience premature menopause. However, some cancer treatments can increase the risk. Chemotherapy and radiation can damage mature and immature egg cells. The body clears away these damaged egg cells. The number of egg cells decreases more rapidly, causing you to enter menopause earlier. How many egg cells are damaged depends on the type and dose of chemotherapy and on the dose and location of radiation.

The following treatments can increase the risk of premature menopause:

• Chemotherapy with alkylating agents

• Radiation to the ovaries or to an area where the ovaries are located

You can see in your treatment summary whether you have received one or more of these treatments. If you do not have a summary, you can contact the LATER clinic or the hospital where you were treated. Premature menopause does not always have to be caused by treatment. There may also be other causes.

What are the symptoms and signs of premature menopause?

Certain symptoms and signs may indicate premature menopause. Even if you do not have these symptoms and signs at the moment, it is important to recognize them in case you ever develop them.

The following symptoms and signs may indicate premature menopause:

In children:

• No signs of puberty at age 13 (breast development, pubic hair, hair on the forearms, first menstruation)

• No further pubertal development for at least 12 months

• No menstruation by age 16

• Irregular menstruation with cycles shorter than 21 days or longer than 35 days, at least 2 years after the first menstruation

In adults:

• Irregular menstruation with cycles shorter than 21 days or longer than 35 days

• No menstruation for at least 4 months

• Reduced libido

• Vaginal dryness

• Pain during intercourse

• More difficulty than normal reaching orgasm

• Hot flashes

• Sleep problems

If you recognize any of these symptoms or signs in yourself or your child, contact your general practitioner or LATER physician.

I have an increased risk of premature menopause. What tests are necessary and when?

If you have an increased risk of premature menopause, the recommendation is:

For girls from age 11:

• Visit your general practitioner or LATER physician at least once a year to have the progress of puberty and growth measured

• Have a blood test done to measure important sex hormones if your child shows no signs of puberty or if puberty has stalled for a year

• Have a blood test done if your daughter has not had her period by age 16

• Have a blood test done in case of irregular menstruation or if you (or your daughter) want to know if becoming pregnant in the future is possible

For adult women:

• From the end of puberty, discuss your menstrual cycle with your doctor every five years

• Have a blood test done in case of irregular menstruation or if you want to know if becoming pregnant in the future is possible

• From the end of puberty, have a physical examination every 5 years

What happens if I experience premature menopause?

If you experience premature menopause, your general practitioner or LATER physician will likely refer you to a specialist:

• (Pediatric) endocrinologist (physician specialized in hormones and metabolism)

• Gynecologist/fertility specialist (physician specialized in female fertility)

They will discuss the various treatment options with you, such as hormone therapy.

What else can I do?

If you wish to have children, it is good to know what the options are.

• If you had egg cells frozen before or shortly after treatment, they will be thawed at a later time and fertilized with a sperm cell (in vitro fertilization or IVF). The resulting embryos are then placed in the uterus. The chance of pregnancy per transferred egg cell is approximately 5%. Children born after frozen egg cells have not shown more birth defects than other children.

• If you had ovarian tissue frozen before treatment, it can be thawed at a later time and transplanted back into the remaining ovary. It is always first checked whether there are no cancer cells in the tissue. If the ovary functions, there is a 30% chance of pregnancy (based on figures from women who had ovarian tissue frozen as adults).

• Research is being conducted worldwide into the possibility of maturing immature egg cells in the laboratory (in vitro maturation or IVM). An egg cell always consists of one cell, so it cannot contain cancer cells. IVM is still in development, but we hope to be able to safely use ovarian tissue in the future.

When having your own child is not possible, you can also consider IVF with donor egg cells, surrogacy, or adoption.

It can be difficult to have (an increased risk of) premature menopause. It can affect your (sexual) relationships. Talking with friends and family can help. Contact with people in a similar situation can also be helpful, for example through a patient association such as VOX, part of the Dutch Childhood Cancer Association.

Above all, take good care of yourself. Although it does not reduce the risk of premature menopause, a healthy lifestyle remains important. Also take care of your mental health. Small changes can already have a positive impact on your physical and mental wellbeing.

It is important that you recognize the symptoms and signs. If you have questions or are concerned after reading this information, contact your general practitioner or LATER physician.

Where can I find more information?

This LATER website also contains information about:

• Healthy lifestyle

• Mental health

In the PanCare Plain Language Summaries you will find links to reliable information in English. You can search for information about premature menopause online, but keep in mind that it is not always up-to-date and accurate.

Disclaimer

This information is based on the plain language summary of the guideline below, created by the PanCare Plain Information Group, and has been adapted to the Dutch LATER guideline where necessary. If you experience symptoms and signs, do not rely solely on this information, but consult your general practitioner, LATER physician, or specialist.

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