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 users 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 someone 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 a 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 people 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 the bowels, constipation, diarrhoea, bloating, nausea, rectal pain, pressure or heaviness, pain before or after a bowel movement, feeling like the bowel has not fully emptied, cyclical bowel symptoms, or rectal bleeding.
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, pain when the bladder is full, pain after emptying the bladder, pelvic pain linked with urination, blood in the urine especially if cyclical, or symptoms that feel like repeated urine infections.
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, or emotional distress linked with painful sex.
Painful sex is not something a person should feel embarrassed about or be 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.
If fertility matters now or may matter in the future, it is reasonable to ask how suspected or confirmed endometriosis could affect options.
Fatigue and whole-body symptoms
Endometriosis can be exhausting. Fatigue is more than feeling a bit tired. It can feel like the 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, poor sleep 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 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, or pain that feels different from usual cramping.
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, or 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.
Possible symptoms may include shoulder tip pain, chest pain, shortness of breath, coughing blood, recurring collapsed lung linked with the menstrual cycle, upper abdominal or diaphragm pain, bowel pain, rectal bleeding, urinary pain, blood in the urine, hip, buttock, leg or sciatic-type pain, numbness, tingling, weakness, or 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.
What to track before an appointment
Before speaking to a healthcare professional, write down what is happening. Symptoms can be hard to remember clearly during an appointment.
Users should use the Prepare for Appointment Tool to organise symptoms, questions and key concerns before speaking with a doctor, specialist or other healthcare professional.
The tool should help users think through pain location, pain type, timing, cycle link, bowel symptoms, bladder symptoms, bleeding pattern, pain during or after sex, fatigue, nausea or dizziness, pain relief and whether it helps, missed school/work/activities, impact on sleep/mood/daily life, and family history if known.
When to seek medical advice
Speak with a healthcare professional if symptoms disrupt daily life, cause missed school or work, keep returning, flare with the cycle, include heavy bleeding or bleeding between periods, affect sex, fertility or energy, are worsening, or are being dismissed but still affecting life.
Seek urgent medical help for severe sudden pain, fainting, fever, heavy bleeding that feels unsafe, chest pain, shortness of breath, coughing blood, or new problems controlling 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.
Symptoms are worth taking seriously. If symptoms are affecting life, they deserve proper attention, investigation and care.