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.
This article explains symptoms outside the pelvis that may be worth tracking and discussing with a healthcare professional.
Endometriosis is not limited to pelvic symptoms
Endometriosis is often discussed in relation to pelvic pain and periods, but it can involve other areas of the body.
It may be found in or around areas such as bowel, bladder, ureters, diaphragm, lungs or chest cavity, abdominal wall, belly button, surgical scars, sciatic nerve or nearby nerves, and other extra-pelvic sites.
Symptoms may look very different depending on the area affected.
Diaphragm, chest and lung symptoms
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 rib pain
- pain with breathing during flares
Chest pain, shortness of breath, coughing blood or a suspected collapsed lung should be treated as urgent symptoms and assessed immediately.
Abdominal wall, belly button and scar symptoms
Endometriosis can sometimes involve the abdominal wall, belly button or surgical scars.
Symptoms may include pain in or near a scar, swelling or a lump near a scar, bleeding or discharge from the belly button or scar area, tenderness, colour change, or symptoms that worsen around the menstrual cycle.
A painful lump, changing scar or bleeding from a scar or belly button should be checked by a healthcare professional.
Urinary tract symptoms outside the pelvis
Endometriosis involving the ureters can matter because the ureters carry urine from the kidneys to the bladder.
Symptoms may include urinary pain, blood in the urine, flank or back pain, bladder symptoms that flare cyclically, recurrent UTI-like symptoms, or kidney-related concerns.
Blood in the urine, severe back or flank pain, fever or signs of kidney infection should be assessed promptly.
Nerve and leg symptoms
Symptoms may include sciatic-type pain, buttock/hip/groin/leg pain, numbness or tingling, burning or electric pain, weakness during flares, or difficulty walking normally.
New weakness, foot drop, loss of bladder or bowel control, or numbness around the genitals or saddle area should be treated as urgent.
What to track before an appointment
Users should use the Prepare for Appointment Tool to organise symptoms outside the pelvis.
It can help record where the symptom is, what it feels like, whether it links to the cycle, whether it links to breathing/urination/bowel movements/sex/movement, how long it lasts, whether it is worsening, whether there are urgent symptoms, and whether symptoms happen with pelvic pain, fatigue or bleeding.
Questions to ask
Users may want to ask:
- Could these symptoms be linked with endometriosis?
- Could extra-pelvic endometriosis be considered?
- Would specialist imaging help?
- Should another specialist be involved?
- Do I need gynaecology, colorectal, urology, thoracic, neurology or pain input?
- What symptoms should I treat as urgent?
Final reminder
Symptoms outside the pelvis should not be dismissed, especially if they follow a menstrual pattern or happen alongside other endometriosis symptoms.
Endometriosis can affect different areas of the body, and the right care may need more than one type of specialist.