PREMATURE OVARIAN INSUFFICIENCY

This page is part of the PanCare PLAIN summaries about late effects and recommendations for long-term follow-up care for survivors of childhood, adolescent, and young adult cancer. Click here, for more information on the PLAIN summaries.

Premature ovarian insufficiency (POI)

For fertility and overall health, the reproductive organs must function properly. In women, the most important reproductive organs are the vagina, womb (uterus), fallopian tubes and ovaries. They are located in the lower abdomen.

Girls are usually born with two ovaries which develop and mature over time, starting from puberty. The two main functions of the ovaries are:

  • Production of progesterone and oestrogen: Progesterone and oestrogen are female sex hormones which are important for normal development of reproductive organs (pubertal development), good sexual function and overall health. Progesterone and oestrogen are also important in regulating the menstrual cycle (periods).
  • Production of eggs: Each menstrual cycle, an egg is released from one of the ovaries into the fallopian tube (ovulation). If the egg is fertilised by a sperm, the egg travels down the fallopian tube into the womb. In the womb the fertilised egg will grow into a baby. If the egg is not fertilised, the woman has her period.

Starting sometime during puberty, the menstrual cycle repeats every 21 to 35 days until the woman reaches the menopause. After the menopause, the ovaries produce less sex hormones and no longer release eggs. Women then no longer have periods and cannot become pregnant. Women usually reach menopause between the ages of 45 and 55.

When menopause starts before the age of 40, this is called premature ovarian insufficiency (POI), or early menopause. POI can lead to fertility problems, which reduces the woman’s chance of becoming pregnant. Sometimes POI can cause reduced sexual desire, pain during sex, vaginal dryness or difficulty having an orgasm. Anyone may experience these problems occasionally. However, if these problems occur often and for a longer period of time, we describe this as sexual dysfunction.

Am I at higher risk of POI?

Any woman, including women who have never had cancer treatment, may develop POI. However, there are some cancer treatments that may increase the risk of having POI later in life.

The following treatments can increase the risk of POI:

  • A group of chemotherapy drugs called alkylating agents such as cyclophosphamide and procarbazine. POI is more common after higher doses of alkylating agents, but can occasionally occur after lower doses.
  • Radiotherapy to the ovaries or an area that includes the ovaries

You can find out if you have received any of these treatments by looking at your treatment summary. If you do not have a treatment summary or if you have any questions, do contact your treating hospital.

If you experience POI, it does not always mean that this is caused by your cancer treatment. POI may have other causes. However, in most women with POI the cause is unknown.

What are the symptoms and signs of POI?

There are symptoms and signs that can tell you if you or your child might have POI. You might not have these symptoms and signs at the moment, but it is important to be aware of them in case they may develop in the future.

Symptoms and signs of POI are:

Premature ovarian insufficiency
In children In adults 
  • Children showing no signs of puberty (such as growth of the breasts, pubic and underarm hair) by the age of 13 or no progress of puberty for at least 12 months
  • Periods have not started by the age of 16
  • Irregular periods with cycles shorter than 21 days or longer than 35 days, at least 2 years after the periods have started (irregular periods can be common in the first 2 years)
  • Absent periods for at least 4 months
  • Reduced sexual desire
  • Vaginal dryness
  • Pain during sex
  • Difficulty with having an orgasm, more often than expected
  • Hot flushes
  • Sleeping problems

 

If you recognize any of these symptoms or signs in yourself or in your child, please contact your general practitioner or follow-up care specialist.

I am at higher risk of POI. What tests should I have and when?

What test(s) you should have depends on your age.

If you are at higher risk of POI, it is advised to see your general practitioner or follow-up care specialist regularly and to have the following tests:

  • Have growth and progress of puberty measured at least every year, starting when you or your child is at least 11 years of age.
  • Have a blood test done to measure important sex hormones. This is usually done when you do not show any signs of puberty or do not progress through puberty for at last 12 months. It is also advised to have a blood test when you did not have your first period by the age of 16. Blood tests can also be done if periods are irregular or if you wish to know more about your chances of becoming pregnant in the future.
  • Discuss your menstrual cycle every 5 years following puberty.
  • Have a physical exam done every 5 years following puberty.

What happens if I have POI?

If you have POI, your general practitioner or follow-up care specialist will probably refer you to a specialist. Depending on the symptoms and/or signs you experience, you may be referred to an:

The specialist may discuss different treatment options with you, such as hormone replacement therapy (HRT).

What else can I do?

Not everyone wishes to become a parent, but if you do, you may wish to explore the options available. These may include using in vitro fertilisation (IVF) or donated eggs from another woman. You can also use your own eggs if you had some stored before cancer treatment or you could freeze them now if you are at higher risk of POI. Adoption or surrogacy may also be an option for you to consider.

Experiencing POI can be difficult. POI may also affect your relationships, including your sexual relationships. Taking care of your mental health may be beneficial; even small changes to your lifestyle can have a positive impact on both your physical and mental health. For more information on taking care of your mental health, please read: Mental health problems.

Although it is unlikely to reverse POI caused by cancer treatment, it is still important to live a healthy lifestyle. Taking care of your mental health may be beneficial: Even small changes to your lifestyle can have a positive impact on your physical and mental health. For more information on taking up a healthier lifestyle, please read: Health promotion.

It is important that you are aware of the possibility of developing POI and that you know the symptoms and signs. If you have any further questions or the information in this brochure concerns you, please contact your general practitioner or follow-up care specialist.

Where can I find more information?

You may find more information about POI online. However, it is important to be aware that this information is not always up to date or accurate.

Some sources of further information are:

  • NHS: Here you can find more information about POI in general
  • The Daisy Network: Here you can find more information about a support network for women with POI
  • Healthtalk.org: Here you can find more information about early menopause, including women talking about their own experiences
  • FertilityFriends: Here you can find more information about a support network for people with fertility problems
  • Human Fertilisation and Embryology Authority (HFEA): Here you can find more information about different types of fertility treatment in the UK
  • AdoptionUK: Here you can find more information about adoption in the UK
  • SurrogacyUK: Here you can find more information about surrogacy in the UK
  • Fertility Europe: Here you can find more information about ART (assisted reproduction techniques) and IUI (intrauterine insemination) and which legislations apply in which countries

On this website, you can also find more information related to this topic:

Please note

This PLAIN summary is based on the PanCareFollowUp guideline about “Premature ovarian insufficiency” [1], which is itself based on the corresponding IGHG* guideline[2].

While the PanCare PLAIN information group strives to provide accurate and complete information that is up-to-date as of the date of publication, you can check with your general practitioner or follow-up care specialist if this summary reflects the most up-to-date information available and whether it is relevant for you.

Please do not rely solely on this information. It is best to also seek the advice of a qualified medical practitioner if you have questions regarding a specific medical condition, disease, diagnosis or symptom.

No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information. PanCare has produced the English version and PanCare is not responsible for the translated versions of this summary.

The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.

*International Guideline Harmonization Group for Late Effects of Childhood Cancer

[1] van Kalsbeek, R. et al. (2021) European PANCAREFOLLOWUP recommendations for surveillance of late effects of childhood, adolescent, and Young Adult Cancer, European journal of cancer. Available at: https://www.ejcancer.com/article/S0959-8049(21)00368-3/fulltext

[2] Van Dorp, W. et al. (2016) Recommendations for Premature Ovarian Insufficiency Surveillance for Female Survivors of Childhood, Adolescent, and Young Adult Cancer: A Report From the International Late Effects of Childhood Cancer Guideline Harmonization Group in Collaboration With the PanCareSurFup Consortium. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5569686/