Young People and Endometriosis

Young people can have endometriosis and should be taken seriously. Teenagers and young people can experience endometriosis symptoms. Severe period pain should not be dismissed as “normal puberty”, especially when it affects school, sleep, sport, friendships, confidence, mood or everyday life. For parents and carers, it can be difficult to know what is “normal” period pain and what needs medical review. A helpful rule is this: if pain regularly stops a young person doing normal activities, it deserves attention.

Severe period pain is not something to just put up with

Some period discomfort can be common, especially in the first few years after periods start. But pain that is severe, worsening, disruptive or not helped by usual pain relief should be discussed with a healthcare professional. It is worth asking for help if a young person:

  • misses school, work, sport or social activities because of pain
  • vomits, faints or feels very unwell with periods
  • needs to stay in bed because of period pain
  • has pain that is not helped by usual pain relief
  • has pelvic pain outside periods
  • has bowel or bladder symptoms that flare with periods
  • has heavy bleeding that affects daily life
  • has fatigue that feels more than ordinary tiredness
  • feels anxious, embarrassed or ashamed because of symptoms

Being young does not rule out endometriosis.

Symptoms worth discussing

Symptoms can be physical, emotional and practical. They may not all happen at once. Things to mention include:

  • painful periods
  • pelvic pain between periods
  • pain before a period starts
  • pain when opening the bowels
  • constipation, diarrhoea or bloating that follows a cycle
  • pain when weeing, urinary urgency or blood in wee around periods
  • back, hip, groin or leg pain
  • nausea, vomiting or fainting with periods
  • pain using tampons or menstrual cups
  • pain during or after sex, where relevant
  • severe tiredness or difficulty concentrating
  • repeated absence from school or activities

Young people may not use the word “pelvic”. They may describe tummy pain, cramps, stabbing pain, pressure, back pain, bowel pain or pain that spreads into the hips or legs.

Why symptoms can be missed

Endometriosis in young people can be missed because symptoms may be normalised. A young person may be told:

  • “periods are meant to hurt”
  • “it will settle as you get older”
  • “everyone gets cramps”
  • “it is just stress”
  • “you are too young for endometriosis”

These comments can delay care. Pain that affects daily life should be assessed, even if scans are normal or symptoms are difficult to explain.

Support at home

Parents, carers and trusted adults can help by listening without minimising symptoms. Useful support may include:

  • helping the young person write down symptoms
  • noting missed school, sleep disruption or vomiting
  • helping book and attend appointments, if the young person wants this
  • asking what support they want before speaking for them
  • respecting privacy around periods, sex, bowel or bladder symptoms
  • helping them explain pain clearly
  • reassuring them that needing help is not weakness

A young person should feel believed, not blamed.

Support at school or college

Symptoms can affect attendance, concentration, exams, sport and confidence. Support may include:

  • access to toilets when needed
  • permission to carry suitable medication, if allowed and agreed
  • a quiet place to rest during severe pain
  • flexibility with PE or sport during flares
  • support catching up after absences
  • exam or attendance support where appropriate
  • a named staff member or school nurse to speak to

School support should reduce shame, not draw unwanted attention.

Care should be age-appropriate

Healthcare should be respectful, clear and suitable for the young person’s age and circumstances. Good care should include:

  • explaining options in plain language
  • asking consent before examinations
  • offering choices where possible
  • involving parents or carers where appropriate
  • respecting confidentiality
  • considering safeguarding if needed
  • recognising pain even when tests are normal
  • referring when symptoms need specialist review

A young person should not feel pressured into an examination or treatment they do not understand.

When referral may be needed

Referral may be considered if symptoms are severe, persistent, recurrent, affecting daily life, or not improving with initial treatment. Specialist advice may be particularly important if there are:

  • ongoing symptoms despite treatment
  • bowel or bladder symptoms
  • suspected endometrioma
  • severe pelvic pain
  • nerve-like symptoms, such as shooting, burning, numbness or leg pain
  • symptoms that suggest deep or complex endometriosis
  • significant impact on school, mental health or daily life

A normal ultrasound does not always rule out endometriosis, so ongoing symptoms still deserve follow-up.

Questions to ask

You may want to ask:

  • Could this be endometriosis even though I am young?
  • What else could cause these symptoms?
  • What can we do to manage pain safely?
  • What should we track before the next appointment?
  • Should an ultrasound or further assessment be considered?
  • Does a normal scan rule out endometriosis?
  • When should referral be considered?
  • Should adolescent gynaecology or a specialist endometriosis service be involved?
  • What support can school or college provide?
  • What symptoms should be treated as urgent?

Prepare before you speak with a healthcare professional

Use our Prepare for Appointment Tool to organise symptoms, questions, previous treatments and priorities before the appointment. Try to record:

  • when pain happens
  • whether it links with periods
  • how severe it feels
  • whether school or activities are missed
  • bleeding pattern
  • bowel or bladder symptoms
  • vomiting, fainting or fatigue
  • what pain relief has been tried
  • what helps or does not help
  • family history of endometriosis, if known

You do not need a perfect diary. A clear summary of what is happening and how it affects life can help the conversation feel more focused.

Finding the right type of care

Use the Endometriosis Care Directory to explore endometriosis-related care providers, including adolescent gynaecology services, pelvic physiotherapists, pain specialists and specialist endometriosis services. The directory is for research and information only. It is not a recommendation, referral service, ranking or medical advice. Always check details directly with the provider and speak with an appropriate healthcare professional before making decisions about care.

Final reminder

Young people can have endometriosis, and severe period pain should not be dismissed. Parents, carers and healthcare professionals can help by listening early, taking symptoms seriously, supporting school life, and asking for referral when symptoms are persistent, severe or affecting daily life. This resource is here to support understanding, not replace medical advice from a qualified healthcare professional.