Pain is one of the most common reasons people with endometriosis seek help, but endometriosis pain does not always feel the same for everyone.
Some people have severe period pain. Others have pelvic pain, bowel pain, bladder pain, pain during or after sex, back or hip pain, nerve-like pain, pain around ovulation, or pain that continues throughout the month.
Pain linked with endometriosis can be complex. It may be caused or worsened by inflammation, lesions, adhesions, scar tissue, nerve irritation, pelvic floor muscle tension, organ involvement, or changes in how the nervous system responds to ongoing pain.
Pain is not always only during a period
Painful periods can be one symptom of endometriosis, but pain may also happen before bleeding starts, after bleeding ends, around ovulation, during bowel movements, when passing urine, during or after sex, after exercise, after sitting for long periods, during flare-ups, or most days.
If pain does not fit a neat monthly pattern, that does not mean it cannot be linked with endometriosis.
What endometriosis pain may feel like
People describe endometriosis pain in many different ways. It may feel sharp, stabbing, burning, cramping, aching, dragging, pulling, heavy, deep, electric, shooting, tearing or pressure-like.
Some people feel pain in one area. Others feel pain that spreads or changes location. Pain may also be felt in the back, hips, groin, thighs, rectum, bladder area, abdomen, ribs, chest, shoulder or legs.
Pain severity can vary
Pain may be mild, moderate, severe or disabling. It may come in waves, build gradually, flare suddenly, last for hours or days, improve and then return, worsen over time, affect sleep, stop school or work, or make normal movement difficult.
The amount of visible endometriosis does not always match the amount of pain. Severe pain should not be dismissed because a scan is normal or because disease is described as mild.
Period pain that needs attention
Mild cramps can happen with periods, but severe pain should not be treated as normal.
Speak with a healthcare professional if period pain stops normal activities, causes vomiting or fainting, regularly requires strong pain relief, is getting worse, starts before bleeding and continues after, affects sleep or daily life, is linked with bowel/bladder/nausea/fatigue symptoms, or does not improve enough with usual support.
A person should not have to plan life around pain every month.
Pain outside a period
Pain outside bleeding can be especially confusing. It may be linked with ovulation, inflammation, adhesions, bowel or bladder involvement, pelvic floor muscle tension, nerve irritation, deep endometriosis or other overlapping conditions.
Pain outside a period is worth tracking, especially if it is recurring, worsening, linked with the cycle, or affecting daily life.
Pain and the pelvic floor
When the body is in pain, muscles may tighten to protect the area. Over time, this can affect the pelvic floor and nearby muscles.
Pelvic floor symptoms may include pelvic tightness, pain with sitting, pain with tampons or menstrual cups, pain during pelvic examinations, pain during or after sex, bladder urgency, constipation, or hip, glute or back pain.
Pelvic physiotherapy may help some people, especially where pelvic floor tension is part of the picture.
Pain and the nervous system
Long-term pain can affect how the nervous system processes pain signals. This does not mean pain is imagined. It means the body can become more sensitive after repeated pain or inflammation.
Some people may experience pain that spreads, pain that feels stronger than expected, burning or electric pain, sensitivity to touch, pain after movement or sex, or flares after stress, poor sleep or illness.
Pain management support may be useful for some people, especially where pain has become persistent or complex.
What to track
Users should use the Prepare for Appointment Tool to organise their pain pattern before speaking with a healthcare professional.
It can help to record where the pain is, what it feels like, how severe it is, when it happens, how long it lasts, whether it links to the cycle, whether it links to bowel movements, urination, sex, movement or food, what helps, what makes it worse, what pain relief is used, and whether pain affects school, work, sleep, care, movement or relationships.
When to seek urgent help
Seek urgent medical help for sudden severe pain, fainting, fever, severe pain with vomiting, heavy bleeding that feels unsafe, chest pain, shortness of breath, coughing blood, new weakness or numbness, or new loss of bladder or bowel control.
Final reminder
Endometriosis pain is real, and it can be complex. People should not have to minimise pain, hide it, or wait until they cannot cope before asking for help.