Endometriosis can be difficult to diagnose because symptoms vary from person to person. Some people have severe pain. Some have bowel, bladder, fatigue, fertility or nerve-like symptoms. Some have symptoms that come and go. Others have symptoms most days.
There is no single symptom that proves someone has endometriosis. There is also no single test that gives every answer in every case.
Diagnosis usually involves building a picture from your symptoms, medical history, examination where appropriate, imaging, specialist review and sometimes surgery.
Start with symptoms and history
A healthcare professional should ask about your symptoms, when they happen and how they affect your life.
Important details may include:
- period pain
- pelvic pain
- pain outside your period
- pain around ovulation
- pain during or after sex
- bowel symptoms
- bladder symptoms
- fatigue
- nausea
- heavy bleeding
- bleeding between periods
- fertility concerns
- symptoms outside the pelvis
- family history of endometriosis
- missed school, work or activities
- impact on sleep, relationships and daily life
You should use our Prepare for Appointment Tool before your appointment. It will help you organise your symptoms, timing, questions and key concerns.
Symptom patterns matter
Endometriosis symptoms may be cyclical, constant or unpredictable.
A cyclical symptom follows a pattern around the menstrual cycle. For example, bowel pain, bladder pain, shoulder pain, leg pain or fatigue may worsen before or during a period.
A symptom does not have to be pelvic to be important. If it keeps returning, follows a pattern, or affects your life, it is worth discussing.
Examination may be offered
A healthcare professional may offer an abdominal or pelvic examination. This can sometimes identify tenderness, masses, reduced movement of pelvic organs, nodules or other signs that need further investigation.
You should be asked for consent before any examination. You can ask what the examination involves, why it is being suggested, and whether there are alternatives. You can also decline an internal examination.
If an internal examination is not suitable or you do not want one, ask what other assessment or referral options are available.
Ultrasound may be used
Ultrasound is often used as part of assessment. It may help identify endometriomas, some deep endometriosis, bowel, bladder or ureter involvement, or other conditions that could be causing symptoms.
A normal ultrasound does not always rule out endometriosis. Some types of disease are harder to see, especially if imaging is not specialist or the disease is superficial.
MRI may be used
MRI can be useful for mapping suspected deep endometriosis or complex disease. It may help assess the extent of disease before surgery, especially where bowel, bladder, ureter or other deeper involvement is suspected.
MRI should ideally be planned and interpreted by professionals with experience in endometriosis imaging.
A normal MRI does not always rule out endometriosis.
Referral may be needed
Referral may be appropriate if symptoms are persistent, recurrent, affecting daily life, not improving with initial treatment, or if deep, complex or extra-pelvic endometriosis is suspected.
A person may be referred to:
- a gynaecology service
- an endometriosis specialist
- a specialist endometriosis centre
- paediatric and adolescent gynaecology for young people
- colorectal, urology, thoracic, pain, fertility or other specialists depending on symptoms
Laparoscopy may be considered
Laparoscopy is a type of keyhole surgery. It allows a surgeon to look inside the pelvis and abdomen and, where appropriate, treat endometriosis during the same procedure.
Laparoscopy may be considered even if ultrasound or MRI is normal, especially if symptoms strongly suggest endometriosis or continue to affect daily life.
If surgery is discussed, ask whether the surgeon has experience recognising and treating different appearances and locations of endometriosis, including deep or complex disease.
Biopsy and histology
If tissue is removed during surgery, it may be sent to a laboratory for histology. Histology means the tissue is examined under a microscope.
Histology can help confirm endometriosis, but a negative result does not always exclude it. This can happen if the sampled tissue does not contain endometriosis, if the disease was missed, or if the visual findings and tissue sample do not match clearly.
Diagnosis is not only about one test
Endometriosis diagnosis is often a process. It may involve:
- listening to symptoms
- recognising patterns
- ruling out other causes
- imaging
- referral
- specialist assessment
- laparoscopy in some cases
- reviewing response to treatment
You deserve to be taken seriously throughout this process.
Questions to ask
You may want to ask:
- Could my symptoms suggest endometriosis?
- What else could be causing these symptoms?
- Should I have an ultrasound?
- Would specialist ultrasound or MRI be appropriate?
- Does a normal scan rule out endometriosis?
- Should I be referred to gynaecology or an endometriosis specialist?
- Could bowel, bladder, ureter, diaphragm or nerve involvement be considered?
- What are the next steps if symptoms continue?
- When would laparoscopy be considered?
- What should I do if symptoms worsen?
Final reminder
Endometriosis can be difficult to diagnose, but your symptoms still matter.
A normal scan, a short appointment or being told pain is common should not be the end of the conversation if symptoms continue to affect your life.
Use the Prepare for Appointment Tool to make your symptoms, questions and concerns clear before you speak with a healthcare professional.