Endometriosis can be found outside the pelvis, and symptoms may depend on which organs, tissues or nerves are involved.

Extra-pelvic endometriosis means endometriosis found outside the pelvic cavity. It is important because symptoms may be missed when endometriosis is described only as period pain or only as a pelvic condition. Symptoms that follow a menstrual pattern, flare cyclically, or occur alongside other endometriosis symptoms deserve attention.

What extra-pelvic means

The pelvis includes structures such as the uterus, ovaries, fallopian tubes, pelvic lining, bowel, bladder, ureters, pelvic ligaments and pelvic nerves. Extra-pelvic endometriosis refers to endometriosis found beyond the pelvic cavity. This may include areas such as the diaphragm, chest cavity, lungs, abdominal wall, belly button, surgical scars or other distant tissues. Endometriosis can also affect structures that cross or connect with the pelvis, such as nerves, bowel, bladder and ureters. These may need specialist assessment even when symptoms are not only “gynaecological”.

Why it matters

Extra-pelvic symptoms may be overlooked if endometriosis is framed too narrowly. This matters because someone may have symptoms such as shoulder pain, chest symptoms, scar pain, urinary symptoms, bowel symptoms or nerve-like leg pain and not realise these could be relevant to an endometriosis discussion. This does not mean every symptom is endometriosis. It means symptoms should be assessed properly, especially if they are cyclical, worsening, unusual, or linked with pelvic pain, painful periods, bowel symptoms, bladder symptoms, painful sex, fatigue or fertility concerns.

Possible areas involved

Endometriosis has been described in areas such as:

  • bowel
  • bladder
  • ureters
  • diaphragm
  • chest cavity
  • lungs
  • abdominal wall
  • belly button
  • surgical scars
  • pelvic nerves
  • sciatic nerve area
  • pudendal nerve area
  • other extra-pelvic tissues

Symptoms may depend on location

Symptoms may vary depending on the area involved. Possible examples include:

  • bowel pain, painful bowel movements, constipation, diarrhoea or rectal bleeding
  • bladder pain, urinary urgency, pain passing urine or blood in urine
  • flank pain or kidney-related concerns if the ureter is involved
  • shoulder tip pain, upper abdominal pain or pain under the ribs
  • chest pain, shortness of breath, coughing blood or recurring collapsed lung around a period
  • pain, swelling, bleeding or tenderness in a surgical scar or belly button
  • burning, shooting, tingling, numb or sciatic-type leg pain
  • vulval, perineal or rectal nerve-type pain that worsens with sitting

Specialist assessment may be needed

Extra-pelvic or multi-system symptoms may need more than standard gynaecology care. Depending on symptoms, assessment may involve:

  • gynaecology
  • endometriosis excision surgery
  • colorectal surgery
  • urology
  • thoracic surgery
  • neurology
  • pain management
  • pelvic physiotherapy
  • specialist imaging
  • fertility care, where relevant

Imaging and diagnosis

Imaging may help identify some forms of deep or organ-involving endometriosis, especially when planned and interpreted by clinicians with relevant expertise. A normal scan does not always mean symptoms are not real or that referral is unnecessary.

Questions to ask

You may want to ask:

  • Could these symptoms be linked with extra-pelvic endometriosis?
  • Could bowel, bladder, ureter, diaphragm, chest or nerve involvement be relevant?
  • Which specialist should assess this area?
  • Would specialist ultrasound, MRI or other imaging help?
  • Who will interpret the imaging?
  • Should I be referred to a specialist endometriosis service?
  • Would multidisciplinary team input be needed?
  • What symptoms should I treat as urgent?

Prepare before you speak with a healthcare professional

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

  • where the symptom is
  • what it feels like
  • whether it follows your cycle
  • whether it happens with pelvic, bowel, bladder or fatigue symptoms
  • whether it is worsening
  • how it affects daily life
  • what feels different from your usual symptoms

You do not need a perfect diary. A clear summary can help the conversation feel more focused.

Finding the right type of care

Use the Endometriosis Care Directory to explore different types of endometriosis-related care providers. 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 your care.

Final reminder

Endometriosis can be found outside the pelvis. Symptoms may depend on location and may need specialist assessment. You deserve care that takes the full symptom picture seriously, especially where symptoms are cyclical, multi-system, severe, worsening or affecting daily life. This resource is here to support your understanding, not replace medical advice from a qualified healthcare professional.