Endometriosis can be found in different areas of the body.
It happens when tissue similar to the lining of the uterus is found outside the uterus. This tissue can form lesions, cause inflammation, create scar tissue and adhesions, and affect how organs, tissues and nerves function.
Endometriosis is often discussed as a pelvic condition, but it should not be thought of as only a pelvic or period-related disease. It can involve different body systems, and symptoms may depend on where the disease is, how deep it is, and how the body responds.
Endometriosis can involve pelvic and extra-pelvic areas
Endometriosis may be found on or around:
- the ovaries
- the fallopian tubes
- the outside of the uterus
- the pelvic lining
- the pouch of Douglas
- the uterosacral ligaments
- the bowel
- the rectum
- the bladder
- the ureters
- the pelvic sidewall
- nerves in or near the pelvis
- the diaphragm
- the lungs or chest cavity
- the abdominal wall
- the belly button
- C-section or surgical scars
- other abdominal or extra-pelvic sites
Some reported sites are uncommon, but symptoms outside the pelvis should not be ignored, especially when they follow a pattern around the menstrual cycle or occur alongside other endometriosis symptoms.
Ovaries and endometriomas
Endometriosis can affect the ovaries.
One type of endometriosis linked with the ovaries is an endometrioma. This is a cyst associated with endometriosis. Endometriomas are sometimes called “chocolate cysts” because they may contain old, dark blood.
Endometriomas can be linked with pain, inflammation, ovarian function and fertility concerns for some people. They should be assessed by a healthcare professional with appropriate experience.
Fallopian tubes and fertility
Endometriosis may involve the area around the fallopian tubes.
Inflammation, adhesions or scarring may affect the way pelvic organs move or how the ovaries and tubes sit in relation to each other. This can contribute to fertility difficulties for some people.
Not everyone with endometriosis has fertility problems, but fertility should be discussed if it matters to you now or may matter in the future.
Bowel and rectal area
Endometriosis can involve the bowel or tissues around the bowel.
Symptoms may include:
- pain when opening the bowels
- constipation
- diarrhoea
- bloating
- rectal pain
- pressure or heaviness
- pain before, during or after bowel movements
- feeling like the bowel has not fully emptied
- rectal bleeding, especially if cyclical
Bowel symptoms can be mistaken for irritable bowel syndrome or other digestive conditions. Some people may have both bowel conditions and endometriosis, so symptoms need careful assessment.
If bowel endometriosis is suspected, care may involve a gynaecologist with endometriosis expertise and, in some cases, a colorectal surgeon.
Bladder, ureters and urinary tract
Endometriosis can involve the bladder, ureters or surrounding urinary tract structures.
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
- blood in the urine, especially if cyclical
- repeated UTI-like symptoms with negative tests
Ureter involvement matters because the ureters are the tubes that carry urine from the kidneys to the bladder. If disease affects the ureters, specialist assessment is important because kidney drainage can be affected.
Bladder symptoms, blood in the urine, severe pain, fever or signs of infection should always be discussed with a healthcare professional.
Diaphragm, chest and lungs
Endometriosis can involve the diaphragm, lungs or chest cavity.
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
These symptoms should be taken seriously. Chest pain, shortness of breath, coughing blood or a suspected collapsed lung are urgent symptoms and need immediate medical assessment.
Thoracic or diaphragm endometriosis may require specialist input, which can include gynaecology and thoracic surgery.
Nerves, hip, leg and sciatic-type symptoms
Endometriosis can be linked with nerve-like symptoms, especially if inflammation, deep disease, adhesions, scarring or pelvic floor tension affects nerves or nearby tissues.
Symptoms may include:
- burning pain
- shooting pain
- electric shock-like pain
- pain travelling into the buttock, hip, groin or leg
- numbness or tingling
- sciatic-type pain
- weakness or changes in walking during flares
New or worsening weakness, numbness, foot drop, or problems with bladder or bowel control should be assessed urgently.
Nerve-like symptoms may have different causes, so they should be properly reviewed.
Abdominal wall, belly button and surgical scars
Endometriosis can sometimes appear in the abdominal wall, belly button or surgical scars, including scars after a C-section or other abdominal surgery.
Symptoms may include:
- pain in or near a scar
- swelling or a lump near a scar
- tenderness
- colour change
- bleeding or discharge from the belly button or scar area
- symptoms that worsen around the menstrual cycle
A painful lump or changing scar should be checked by a healthcare professional.
Adhesions can affect where pain is felt
Endometriosis can lead to adhesions. Adhesions are bands of scar-like tissue that can make organs or tissues stick together.
This can sometimes cause pain in areas that feel difficult to explain. For example, pain may feel like pulling, dragging or tightness. It may change with movement, sitting, bowel movements, sex or bladder fullness.
Adhesions may involve the ovaries, bowel, bladder, uterus, pelvic sidewall or other tissues.
Symptoms depend on location and body response
The symptoms of endometriosis are not always predictable.
Two people with endometriosis in similar areas may have different symptoms. A person with a small amount of disease may have severe pain. A person with more visible disease may have fewer symptoms.
Symptoms can be influenced by:
- inflammation
- lesion location
- disease depth
- adhesions and scarring
- nerve involvement
- pelvic floor muscle response
- other conditions
- pain sensitivity
- previous surgery
- hormonal changes
- immune response
This is why endometriosis care often needs to be individualised.
Why multidisciplinary care may be needed
Because endometriosis can involve different organs and tissues, some people may need more than one type of specialist.
Depending on symptoms and findings, care may involve:
- gynaecology
- excision surgery
- colorectal surgery
- urology
- thoracic surgery
- neurology
- pain management
- pelvic physiotherapy
- fertility care
- nutrition or dietetic support
- psychological or emotional wellbeing support
Multidisciplinary care does not mean everyone needs every specialist. It means the care team should match the person’s symptoms, disease location and goals.
What to do if your symptoms are outside the pelvis
Symptoms outside the pelvis can be confusing, especially if previous appointments have focused only on periods or pelvic pain.
It may help to track:
- where the symptom is
- what it feels like
- when it happens
- whether it links to your cycle
- whether it happens with bowel movements, urination, sex, breathing or movement
- how long it lasts
- what makes it better or worse
- whether it affects school, work, sleep or daily life
Use our Prepare for Appointment Tool to organise your symptoms and questions before speaking with a healthcare professional.
Final reminder
Endometriosis can be found in different areas of the body. It is not limited to the uterus, and it should not be dismissed as only a period problem.
If symptoms are persistent, worsening, cyclical, unusual or affecting your life, they deserve proper attention.
You know your body. If something does not feel right, it is reasonable to ask for it to be investigated.