Endometriosis can affect people in different ways

Some people have severe symptoms. Some have symptoms that come and go. Some have symptoms that are blamed on periods, digestion, stress, hormones or “normal pain” for years before endometriosis is considered. There is no single symptom that proves someone has endometriosis. There is also no single pattern that everyone follows. Endometriosis symptoms can depend on where the disease is, how deep it is, whether there is inflammation, scarring or adhesions, and how the body’s nerves, muscles and immune system are responding. This guide explains symptoms often linked with endometriosis, so you can better understand what may be worth tracking and discussing with a healthcare professional.

Endometriosis is not just period pain

Painful periods can be one sign of endometriosis, but endometriosis is not only a period problem. Some people have symptoms mainly before or during their period. Others have pain or other symptoms throughout the month. Symptoms may also change over time. Pain or symptoms that stop you going to school, work, social events, exercise or normal daily activities should not be dismissed as “just part of having periods”.

Common pain symptoms

Pain linked with endometriosis can vary in location, timing and intensity. Symptoms may include:

  • very painful periods
  • pelvic pain
  • lower abdominal pain
  • pain that happens outside your period
  • pain around ovulation
  • lower back pain
  • hip, groin or leg pain
  • pain that feels sharp, stabbing, burning, pulling or cramping
  • pain that worsens over time
  • pain that affects sleep, school, work or daily life

Some people describe their pain as deep, heavy, dragging, burning or nerve-like. Others may feel pressure, tightness or a pulling sensation, especially if adhesions or pelvic floor tension are involved. The amount of pain does not always match the amount of endometriosis seen on scans or during surgery. A person can have severe pain even if only a small amount of disease is found.

Period-related symptoms

Endometriosis symptoms may be worse before or during a period, but they can also happen at other times. Symptoms may include:

  • severe period pain
  • heavy bleeding
  • bleeding that lasts longer than expected
  • spotting before or after a period
  • pain before bleeding starts
  • pain that continues after bleeding ends
  • nausea, diarrhoea or bowel changes around a period
  • exhaustion around a period
  • pain that is not helped enough by usual pain relief

Severe pain that regularly disrupts life is not something you should simply be expected to cope with.

Bowel symptoms

Endometriosis can be linked with bowel symptoms, especially when symptoms flare around a period or follow a pattern. Bowel symptoms can also happen because of inflammation, adhesions, pelvic floor dysfunction, pain sensitivity or other overlapping conditions. Symptoms may include:

  • pain when opening your bowels
  • constipation
  • diarrhoea
  • bloating
  • nausea
  • rectal pain
  • pressure or heaviness in the bowel area
  • pain before, during or after a bowel movement
  • feeling like the bowel has not fully emptied
  • symptoms that are worse around your period
  • bleeding from the bowel, especially if it follows a cyclical pattern

Bowel symptoms are sometimes mistaken for irritable bowel syndrome. It is also possible to have bowel symptoms with endometriosis even if endometriosis is not directly growing into the bowel.

Bladder and urinary symptoms

Endometriosis can also be linked with bladder or urinary symptoms. These may be worse around a period or may happen more regularly. Symptoms may include:

  • pain when passing urine
  • bladder pressure
  • needing to wee more often
  • urgency to wee
  • pain when the bladder is full
  • pain after emptying the bladder
  • pelvic pain linked with urination
  • blood in the urine, especially if it happens cyclically
  • symptoms that feel like repeated urine infections, but tests are often negative

Bladder symptoms should always be discussed with a healthcare professional, especially if there is blood in the urine, severe pain, fever or symptoms of infection.

Pain during or after sex

Endometriosis can cause pain during or after sex, especially deep pain. This may feel like:

  • deep pelvic pain during penetration
  • pain that continues after sex
  • cramping after sex
  • sharp pain in certain positions
  • pain that makes sex difficult or impossible
  • emotional distress linked with painful sex

Painful sex is not something you should feel embarrassed about or expected to tolerate. It is a valid symptom and should be taken seriously.

Fertility-related symptoms

Some people first discover they may have endometriosis when they have difficulty getting pregnant. Endometriosis can affect fertility for some people, although not everyone with endometriosis will have fertility problems. Possible fertility-related signs include:

  • difficulty getting pregnant
  • needing fertility investigations
  • a history of pelvic pain with fertility concerns
  • known endometriomas or adhesions
  • pain symptoms alongside difficulty conceiving

If fertility matters to you now or may matter in the future, it is reasonable to ask how suspected or confirmed endometriosis could affect your options.

Fatigue and whole-body symptoms

Endometriosis can be exhausting. Fatigue is more than feeling a bit tired. It can feel like your body is heavy, drained or unable to recover properly. Symptoms may include:

  • extreme tiredness
  • needing more rest than usual
  • feeling wiped out after normal activities
  • brain fog
  • difficulty concentrating
  • sleep disruption because of pain
  • feeling physically unwell around flares
  • nausea
  • reduced stamina
  • low mood or anxiety linked with ongoing symptoms

Living with long-term pain and uncertainty can affect mental health too. This does not mean the symptoms are “in your head”. It means the impact of the condition is real and can affect the whole person.

Nerve-like symptoms

Some people with endometriosis describe symptoms that feel nerve-related. These symptoms should be discussed with a healthcare professional, especially if they are severe, worsening or affecting walking, bladder or bowel control. Symptoms may include:

  • burning pain
  • shooting pain
  • electric shock-like pain
  • numbness or tingling
  • pain travelling into the hip, groin, buttock or leg
  • sciatic-type pain
  • weakness or difficulty moving normally during pain flares
  • pain that feels different from usual cramping

Nerve-like symptoms can have different causes, so they need proper assessment.

Pelvic floor and muscle symptoms

Endometriosis-related pain can affect the pelvic floor and surrounding muscles. Muscles may tighten in response to pain, inflammation or repeated guarding. Symptoms may include:

  • pelvic tightness
  • pain with sitting
  • pain with inserting tampons or menstrual cups
  • pain during pelvic examinations
  • urinary urgency
  • constipation or difficulty emptying the bowel
  • pain after exercise
  • hip, back or glute pain
  • a feeling of pressure or heaviness

Pelvic physiotherapy may help some people, especially when pelvic floor tension or ongoing pelvic pain is part of the picture.

Symptoms outside the pelvis

Endometriosis can be found in areas outside the pelvis. Symptoms may depend on which organs, tissues or nerves are involved. These symptoms are important to recognise, especially when they follow a pattern around the menstrual cycle or happen alongside other endometriosis symptoms. Possible symptoms may include:

  • shoulder tip pain around a period
  • chest pain around a period
  • shortness of breath around a period
  • coughing blood around a period
  • recurring collapsed lung linked with the menstrual cycle
  • upper abdominal or diaphragm pain
  • bowel pain, rectal bleeding or significant bowel changes
  • urinary pain, blood in the urine or bladder symptoms that flare cyclically
  • hip, buttock, leg or sciatic-type pain
  • numbness, tingling or weakness in the leg
  • pain, swelling or bleeding from a surgical scar, belly button or abdominal wall that changes with the cycle

Chest pain, shortness of breath, coughing blood, fainting, severe sudden pain, or new weakness or loss of bladder or bowel control should be treated as urgent symptoms and assessed immediately. Endometriosis outside the pelvis may need input from different specialists, depending on the area affected. This could include gynaecology, colorectal surgery, urology, thoracic surgery, neurology, pain management, pelvic physiotherapy or other specialist care.

Symptoms in teenagers and young people

Teenagers and young people can have endometriosis. Severe period pain in young people should not be automatically dismissed as normal. Symptoms worth discussing include:

  • period pain that causes missed school
  • vomiting, fainting or being unable to function with periods
  • pain that is not helped enough by usual pain relief
  • bowel or bladder symptoms around periods
  • pelvic pain outside periods
  • needing to plan life around pain
  • exhaustion or distress linked with symptoms

A young person does not need to “wait and see for years” before their symptoms are taken seriously.

Symptoms can be cyclical, constant or unpredictable

One reason endometriosis can be confusing is that symptoms do not always behave the same way. They may be:

  • cyclical, happening before or during a period
  • related to ovulation
  • triggered by sex, bowel movements, urination or exercise
  • constant in the background
  • unpredictable
  • worse during flares
  • affected by stress, tiredness, other illness or lack of sleep

Tracking symptoms can help you see patterns that may be hard to remember during an appointment.

What to track before an appointment

Before speaking to a healthcare professional, write down what you are experiencing. Symptoms can be hard to remember clearly during an appointment, especially if you have been living with pain or uncertainty for a long time. You should use our Prepare for Appointment Tool to organise your symptoms, questions and key concerns before you speak with a doctor, specialist or other healthcare professional. The tool will help you think through:

  • where the pain is
  • what the pain feels like
  • when symptoms happen
  • whether symptoms link to your cycle
  • bowel symptoms
  • bladder symptoms
  • bleeding pattern
  • pain during or after sex
  • fatigue
  • nausea or dizziness
  • pain relief used and whether it helps
  • missed school, work or activities
  • impact on sleep, mood and daily life
  • family history of endometriosis, if known

You do not need a perfect diary. Even a few notes can help you explain what is happening and make the most of your appointment.

When to seek medical advice

Speak with a healthcare professional if you have:

  • pain that disrupts daily life
  • period pain that causes missed school, work or activities
  • pelvic pain that keeps coming back
  • pain during or after sex
  • bowel or bladder symptoms that flare with your cycle
  • very heavy bleeding
  • bleeding between periods
  • difficulty getting pregnant
  • fatigue that feels extreme or ongoing
  • symptoms that are worsening
  • symptoms that are being dismissed but still affecting your life

Seek urgent medical help if you have severe sudden pain, fainting, fever, heavy bleeding that feels unsafe, chest pain, shortness of breath, coughing blood, or new problems controlling your bladder or bowel.

Final reminder

Endometriosis can affect far more than periods. It can involve pain, digestion, bladder symptoms, fatigue, fertility, sex, movement, emotional wellbeing and everyday life. Your symptoms are worth taking seriously. You do not need to prove that your pain is “bad enough” before asking for help. If symptoms are affecting your life, they deserve proper attention, investigation and care.

Helpful next step

Prepare for an appointment