Relationships, Sex & Fertility

Living with a pituitary condition

A pituitary condition can affect many different aspects of life including relationships, intimacy, sexual health and fertility.

While having a pituitary condition does not mean that you cannot have a fulfilling relationship, have a satisfying sex life or become a parent, hormone deficiencies and the symptoms associated with pituitary conditions can sometimes create additional challenges.

Fatigue, changes in mood, pain, reduced confidence, changes in body image, sexual difficulties and the demands of managing a long-term condition can all affect how you feel about yourself and how you interact with partners, family and friends.

Understanding these effects can help you and the people close to you find ways of managing them together.

How can a pituitary condition affect relationships?

People living with pituitary conditions can have and maintain loving, healthy and fulfilling relationships.

However, living with a long-term condition can sometimes change how you live your life.

Physical effects

Symptoms such as:

• Fatigue and low energy
• Headaches or pain
• Reduced physical stamina
• Sleep difficulties
• Hormonal changes
• Sexual difficulties
• Changes in weight or body composition
• The need to take medication throughout the day
• Frequent medical appointments

may make socialising, dating or spending time together more difficult at times.

Some people may need to plan activities around their energy levels or treatment needs.

Emotional effects

Living with a pituitary condition can also affect emotional wellbeing.

You may experience:

• Reduced confidence
• Anxiety
• Low mood
• Irritability
• Changes in self-esteem
• Concerns about your appearance
• Worry about the future
• Frustration about having a condition that other people may not understand

These experiences can sometimes affect communication and relationships.

When symptoms are unpredictable

Some pituitary conditions can involve symptoms or treatment requirements that are difficult to predict.

For example, someone living with Arginine Vasopressin Deficiency (AVP-D) may need frequent access to fluids and toilets.

Someone with adrenal insufficiency may need to carefully manage steroid replacement and have a plan for illness or emergencies.

These requirements can influence where you go, how long you stay somewhere and how much planning is needed.

This does not mean that you cannot enjoy an active social life or relationships. It may simply mean finding ways of adapting your plans to your needs.

Talking to your partner

It can sometimes be difficult to explain a condition that other people cannot see.

Being open about your pituitary condition, when you feel comfortable doing so, can help your partner understand what you are experiencing.

You might want to explain:

• What your pituitary condition is
• How it affects you day to day
• Which symptoms are particularly difficult
• What medications you take
• Why you sometimes need to rest
• What support you may need
• What happens if you become unwell
• How your condition may affect intimacy or sexual function

You do not have to explain everything at once.

Communication is a process, and what you need from your partner may change over time.

Sex and pituitary conditions

Having a pituitary condition does not mean that you cannot have a sexual relationship.

However, changes in hormone levels can affect sexual health and desire.

Depending on your individual condition, this may include deficiencies in:

• Testosterone
• Oestrogen
• Other reproductive hormones
• Thyroid hormones
• Growth hormone
• Cortisol

Symptoms such as fatigue, low mood, anxiety, changes in body image and medication side effects may also affect sexual wellbeing.

Reduced libido

A reduced sex drive can have many possible causes.

In someone with a pituitary condition, hormone deficiencies may be one contributing factor, but they are not necessarily the only cause.

If you notice a significant change in your libido, speak with your GP, endocrinologist or endocrine nurse.

It is completely appropriate to discuss sexual health with your healthcare team.

Sexual difficulties

Depending on the underlying hormone deficiency, some people may experience:

Men

• Reduced libido
• Erectile difficulties
• Reduced spontaneous erections
• Reduced testosterone
• Reduced sperm production

Women

• Reduced libido
• Vaginal dryness
• Pain or discomfort during sex
• Menstrual changes
• Reduced oestrogen levels

Other factors, including tiredness, anxiety, depression, relationship difficulties and some medications, can also affect sexual function.

Your healthcare team can help determine whether hormonal treatment or another form of support may be appropriate.

Pituitary conditions and fertility

Many people with pituitary conditions are able to have children.

However, some pituitary conditions can affect fertility because the pituitary gland plays an important role in controlling the reproductive system.

The pituitary produces two important reproductive hormones:

• Luteinising hormone (LH)
• Follicle-stimulating hormone (FSH)

These hormones act on the ovaries in women and the testes in men.

If the pituitary does not produce enough LH and FSH, reproductive function can be affected.

How can pituitary conditions affect fertility in women?

LH and FSH are important for normal ovarian function and ovulation.

When these hormones are deficient, a woman may experience:

• Irregular periods
• Absent periods
• Reduced oestrogen production
• Lack of ovulation
• Difficulty becoming pregnant

This type of fertility problem may occur with hypopituitarism or central hypogonadism.

However, pituitary-related infertility does not necessarily mean that pregnancy is impossible.

Depending on the underlying cause, fertility treatment may be able to stimulate ovulation.

The HSE recognises hormonal and ovulation problems as possible causes of fertility difficulties and provides fertility assessment and treatment through its Regional Fertility Hubs. HSE.ie

How can pituitary conditions affect fertility in men?

LH and FSH are also essential for normal testicular function.

LH stimulates testosterone production, while FSH plays an important role in sperm production.

A deficiency of these hormones can therefore cause:

• Low testosterone
• Reduced sperm production
• Very low sperm numbers
• In some cases, no sperm in the semen
• Difficulty conceiving

Importantly, testosterone replacement is not a fertility treatment.

In men who wish to have children, testosterone treatment can suppress sperm production. Fertility-focused treatment may instead involve gonadotrophin therapy under specialist supervision.

What if I want to have children?

If you have a pituitary condition and are considering having children, talk to your endocrinologist and GP.

It is a good idea to discuss your plans before trying to conceive, where possible.

Your healthcare team can review:

• Your pituitary hormone function
• Your current medications
• Your reproductive hormones
• Your menstrual cycle or sperm production
• Any other factors that may affect fertility
• Whether specialist fertility assessment is appropriate
• Whether treatment needs to be adjusted before pregnancy

Even if you have not experienced fertility problems, discussing pregnancy with your healthcare team can be important because pregnancy can affect some pituitary conditions and hormone replacement requirements.

What if I don't want children now but may in the future?

If you have been diagnosed with a pituitary condition and may want children in the future, it is worth discussing fertility with your endocrinology team.

Some treatments can affect fertility, and planning ahead may sometimes provide additional options.

Depending on your individual circumstances, your healthcare team may discuss:

• Fertility preservation
• Sperm storage
• Egg or embryo preservation
• Future fertility treatment
• Referral to a fertility specialist

The appropriate option depends on your age, diagnosis, treatment and reproductive plans.

Fertility treatment in Ireland

If you are experiencing difficulty becoming pregnant, speak with your GP or consultant.

The HSE has established Regional Fertility Hubs providing fertility assessment and treatment.

The current HSE network includes six hubs across Ireland:

• Coombe Hospital, Dublin
• National Maternity Hospital, Dublin
• Rotunda Hospital, Dublin
• Cork University Maternity Hospital
• University Hospital Galway
• University Hospital Limerick

The HSE fertility service can provide investigations and treatments such as hormone testing, ultrasound, semen analysis, medical management and ovulation induction. HSE.ie

Your GP or consultant can advise whether you meet the current referral criteria.

Eligibility criteria apply and can change, so always check the latest information directly with the HSE.

Assisted fertility treatment

For people who meet the relevant HSE eligibility criteria, publicly funded assisted human reproduction services include:

• IUI — intrauterine insemination
• IVF — in vitro fertilisation
• ICSI — intracytoplasmic sperm injection

Referral to these services is through a GP or consultant and a Regional Fertility Hub. There are specific eligibility requirements relating to factors such as age, residency and other circumstances. HSE.ie

Private fertility treatment is also available in Ireland, although costs and eligibility will vary.

Fertility difficulties can affect relationships too

Experiencing difficulties with fertility can be emotionally challenging.

You may experience:

• Sadness
• Frustration
• Anxiety
• Disappointment
• Anger
• Guilt
• Stress
• Fear about the future

Fertility difficulties can also put pressure on relationships.

Partners may experience and cope with these emotions differently.

Try to give each other opportunities to talk openly about how you are feeling.

It can also be helpful to seek professional support if fertility difficulties are affecting your emotional wellbeing or relationship.

You don't have to face it alone

If fertility or sexual health is becoming difficult to talk about, you can speak with:

• Your GP
• Your endocrinologist
• An endocrine nurse
• A fertility specialist
• A reproductive medicine team
• A counsellor or psychologist
• Your partner or someone you trust

There is no need to feel embarrassed about raising questions about sex, relationships or fertility with your healthcare team.

These are legitimate and important aspects of your health.

Information from outside Ireland

You may find useful information about pituitary conditions, relationships and fertility from organisations in other countries, including the Pituitary Foundation UK.

However, information from the UK may not always apply to people living in the Republic of Ireland.

Healthcare systems, referral pathways, eligibility criteria, fertility services, treatment availability and funding arrangements can differ between Ireland and the UK.

For this reason, always check Irish information with the HSE, your GP, endocrinologist or fertility specialist.

Pituitary patient registries and fertility statistics

There is currently no national pituitary patient registry in the Republic of Ireland that provides a comprehensive population-level picture of people living with pituitary conditions.

As a result, reliable Ireland-specific figures for the number of people living with individual pituitary conditions, and some fertility outcomes associated with pituitary disease, may not be available.

Figures quoted in research or information from the UK or other countries may therefore come from international studies, national registries, specialist centres or other datasets and should not automatically be interpreted as representing the Irish population.

For example, international research and disease registries are used to improve understanding of rare pituitary conditions, but their populations may differ considerably from the population of the Republic of Ireland. PubMed

Pituitary Ireland will clearly identify where statistics or research findings come from outside Ireland wherever possible.

A note about research and patient registries

The absence of a national pituitary patient registry in Ireland means that there are limitations in our ability to accurately estimate the number of people living with pituitary conditions nationally.

International registries and research programmes can nevertheless provide valuable information about:

• The number of people affected
• Symptoms and quality of life
• Treatment outcomes
• Fertility
• Pregnancy
• Long-term health
• Patient experiences

One example is the European Registry for Rare Endocrine & Bone Conditions (EuRREB), which is being used to support research into rare endocrine conditions, including pituitary disease. PubMed

Other international patient registries also exist for specific hypothalamic-pituitary conditions. HP Tumor Registry

These resources are valuable for research, but their data should not be assumed to represent people living with pituitary conditions in Ireland.

Support from Pituitary Ireland

At Pituitary Ireland, we recognise that pituitary conditions can affect much more than physical health.

Relationships, intimacy, sexual health, fertility, family planning and emotional wellbeing are all important parts of living a full life.

We aim to provide:

• Information about pituitary conditions
• Information about relationships and sexual health
• Fertility information and signposting
• Support for people planning pregnancy
• Information for partners, families and carers
• Connections to relevant Irish and international organisations
• Awareness of the challenges experienced by people living with pituitary conditions

We are committed to providing information that is relevant to people living in the Republic of Ireland, while clearly identifying when evidence or statistics come from international sources.

You are not alone

Having a pituitary condition does not mean that you cannot have a loving relationship, enjoy intimacy or become a parent.

There may be additional challenges, but support and treatment options are available.

If you have concerns about your hormones, sexual health, fertility or pregnancy plans, talk to your GP or endocrinology team.

Your relationships, fertility and quality of life matter too.

Important disclaimer

The information on this page is for general information and educational purposes only. Pituitary Ireland does not provide individual medical, fertility or relationship advice and does not diagnose conditions or recommend specific treatments.

Healthcare services, eligibility criteria and treatment options can change. Always discuss your individual circumstances with an appropriate healthcare professional and check the latest information from the HSE.

Dr Sue Jackson, Chartered Psychologist, (UK) discussing self confidence and pituitary
⬇️ conditions. ⬇️

Fertility with Prof William Ledge (UK)
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