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MALE FERTILITY PROBLEMS, TESTOSTERONE DEFICIENCY AND SEXUAL DYSFUNCTION

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.

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This PLAIN summary is based on the PanCareFollowUp guideline about “Male fertility problems and sexual dysfunction” [1], which is itself based on the corresponding IGHG* guideline [2].

PLAIN version 2.1: 27/05/2024

Fertility problems, testosterone deficiency and sexual dysfunction in men

The reproductive organs must function properly both for fertility and for overall health. In men, the most important sexual organs are the penis and testicles (testes).

Important functions of the testes are:

  • Production of sperm: When trying to have a baby, the testes must produce enough sperm of good quality. If sperm production and quality are low, this may cause fertility problems and reduces the man’s chances of fathering a baby.
  • Production of testosterone: Testosterone is a male sex which is important for normal development of the reproductive organs (pubertal development), good sexual function and overall health. When the testes do not produce enough testosterone, this is called testosterone deficiency.

Sometimes problems can occur such as reduced sexual desire or difficulty having an erection (when the penis becomes hard) or 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.

fertility problems, testosterone deficiency and/or sexual dysfunction can be caused by damage to the reproductive organs or to the nerves that control them.

Male reproductive organs 1 2 3

Male reproductive organs
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Am I at higher risk of fertility problems, testosterone deficiency or sexual dysfunction?

Any man, including men who have never had cancer treatment, may develop fertility problems, testosterone deficiency and/or sexual dysfunction. However, there are some medical conditions or cancer treatments that may increase the risk of having these problems in men later in life. The problems that can occur depends on the type of medical condition or cancer treatment received.

The following treatments can increase the risk of fertility problems:

  • A group of chemotherapy drugs called alkylating agents such as cyclophosphamide and procarbazine. Fertility problems are more common after higher doses of alkylating agents, but can occasionally occur after low doses
  • Any dose of radiotherapy to the testes or an area that includes the testes

The following treatments can increase the risk of testosterone deficiency:

  • Radiotherapy (of 12 Gy or more) to the testes or an area that includes the testes can affect the production of testosterone, which may lead to testosterone deficiency. Testosterone deficiency is more common after higher doses of radiotherapy, but can occasionally occur after doses lower than 12 Gy

The following medical condition can increase the risk of sexual dysfunction:

  • Hypogonadism, where the testes do not produce enough testosterone

The following treatments can increase the risk of sexual dysfunction:

  • Any dose of radiotherapy to the pelvis or an area that includes the pelvis
  • Surgery to the pelvis, spinal cord or nerves that control the reproductive organs

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 fertility problems, testosterone deficiency or sexual dysfunctions, it does not always mean that this is caused by your cancer treatment. Fertility problems, testosterone deficiency or sexual dysfunctions may have other causes.

What are the symptoms and signs of fertility problems, testosterone deficiency or sexual dysfunction?

There are symptoms and signs that may suggest you could be experiencing fertility problems, testosterone deficiency or sexual dysfunction. 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 fertility problems, testosterone deficiency and sexual dysfunction are:

Fertility problems
  • No success while trying to have a baby for at least 6 months
  • Low sperm count (below 5 million sperm cells per ml)
  • Low sperm quality
Testosterone deficiency
In children In adults 
  • No signs of puberty (such as growth of the penis, testicles, pubic and underarm hair) by the age of 14 or no progress of puberty for at least 6 months
  • Little sexual desire
  • Difficulty with having or maintaining an erection as often or strongly as expected.
  • Decrease in muscle mass
  • Loss of body hairs
  • Difficulty with having an orgasm, more often than expected
Sexual dysfunction
  • Difficulty with having or maintaining an erection as often or strongly as expected
  • Difficulty with having an orgasm often or easily
  • Early, delayed or absent ejaculation

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

I am at higher risk of fertility problems, testosterone deficiency and sexual dysfunction. What tests should I have and when?

If you are at higher risk of fertility problems, testosterone deficiency and sexual dysfunction, 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 at 10-12 years of age. This is usually done if treatment included radiotherapy (12 Gy or more) to the testes or an area including the testes.
  • Have a sperm test done (semen analysis) following puberty to measure fertility. With a semen analysis the number and quality of sperm can be measured. You can choose to have this test done if you wish to have a baby soon, or if you wish to know your chances of having a baby in the future. If you have problems in having a baby, the results of a semen analysis can help your treating doctor to advise you on different treatment options. If it is not possible or if you prefer not to have a semen analysis, please discuss with your general practitioner or follow-up care specialist if another test can be helpful.
  • Have a blood test done to measure testosterone at least every 2-3 years. This is usually done if treatment included radiotherapy (12 Gy or more) to the testes or an area including the testes. Your general practitioner or follow-up care specialist can tell you how often this test is necessary for you. If you have any symptoms or signs of hypogonadism or if your testosterone levels have been low before, your general practitioner or follow-up care specialist may additionally measure Luteinizing hormone (LH).
  • Discuss your sexual history and whether you experience(d) any symptoms and signs of sexual dysfunction with your general practitioner or follow-up care specialist at least every 5 years. This is especially done if you had surgery to the pelvis, spinal cord, or nerves that control the reproductive organs. The follow-up care specialist may also ask about your sexual history when you have low levels of testosterone in the blood.

What happens if I have fertility problems, testosterone deficiency and/or sexual dysfunction?

If you have fertility problems, testosterone deficiency and/or sexual dysfunction, 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:

  • Endocrinologist (physician specialised in hormones)
  • Andrologist or fertility specialist (physician specialised in male fertility)
  • Urologist (physician specialised in the urinary tract and the male reproductive organs)

The specialist may discuss different treatment options with you, such as assisted reproductive treatment or hormone replacement therapy (HRT). It is important to never take any testosterone supplements without consulting a medical doctor first.

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 sperm from another man, or using your own sperm if you had some stored before cancer treatment. Adoption may also be an option to consider.

Experiencing fertility problems, testosterone deficiency and/or sexual dysfunction can be difficult. They may affect your relationships, including your sexual relationships. Talking to friends and family can be helpful as well as specialist counselling and/or contact with support groups, such as patient organisations. For more information on taking care of your mental health, please read: Mental health problems.

Although it may not influence fertility problems, testosterone deficiency and/or sexual dysfunction, 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 both 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 fertility problems, testosterone deficiency and/or sexual dysfunction 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 fertility problems, testosterone deficiency and/or sexual dysfunction 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:

  • Fertility Network UK: Here you can find more information about information about fertility in general and how to find support groups in the UK
  • Macmillan Cancer Support: Here you can find more information about fertility in men after cancer treatment
  • 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 “Male fertility problems and sexual dysfunction” [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] Skinner, R. et al. (2017) Recommendations for gonadotoxicity surveillance in male childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. Available at: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(17)30026-8/fulltext