Pain can occur in a variety of areas, depending on where the endometrial-like tissue is located. Pain is the most common and often the most debilitating symptom. The pain may be localised or radiating and can affect multiple systems in the body.
Endometriosis is a chronic condition where tissue similar to the lining of the uterus (the endometrial stroma and glands) grows in areas outside the womb. These cells respond to hormonal changes during the menstrual cycle, causing pain, inflammation, and sometimes scar tissue (adhesions).
How Common Is Endometriosis?
Endometriosis affects around 10% of women and people assigned female at birth during their reproductive years. This equates to approximately 190 million individuals globally [1].
Despite its prevalence, diagnosis is often delayed due to symptom overlap with other conditions. Understanding the locations and nature of endometriosis pain is key to recognising the condition and seeking appropriate help.
Where Does Endometriosis Occur?
The location of endometriosis lesions determines where pain may be experienced. Common anatomical sites include:
- Ovaries – may develop endometriomas (blood-filled cysts)
- Fallopian tubes
- Peritoneum – lining of the abdominal cavity
- Uterosacral ligaments – supporting structures at the base of the uterus
- Bladder and ureters – parts of the urinary tract
- Bowel, rectum, and sigmoid colon
- Pouch of Douglas – the space behind the uterus
Less commonly, endometrial-like tissue may be found in the diaphragm, lungs, abdominal wall, or post-surgical scars.
Common Pain Locations and Presentations
1. Pelvic Pain
Most individuals with endometriosis report chronic pelvic pain. It may be:
- Constant or cyclical (worsening before or during menstruation)
- Deep and aching, often described as a heavy or dragging sensation
- Localised to one or both sides of the lower abdomen
Pain may worsen with prolonged sitting, standing, or physical activity.
2. Menstrual Pain (Dysmenorrhoea)
Severe period pain is a hallmark symptom. It often starts before menstruation begins and can persist for several days.
Unlike normal cramps, endometriosis-related pain:
- May not respond to over-the-counter painkillers
- Can interfere with daily life, work, or education
- May be accompanied by nausea, fatigue, or faintness
3. Pain During or After Sex (Dyspareunia)
Painful intercourse is common when endometriosis affects the:
- Uterosacral ligaments
- Cervix or posterior fornix of the vagina
- Rectovaginal septum (tissue between rectum and vagina)
The pain may be sharp or deep and can linger for hours after sexual activity.
4. Bowel Pain
If endometrial tissue is present on the bowel or rectum, individuals may experience:
- Pain during bowel movements, especially during menstruation
- Bloating, cramping, or diarrhoea
- Constipation or a sensation of incomplete emptying
In rare cases, lesions can cause bowel obstruction, requiring urgent medical attention.
5. Bladder and Urinary Tract Pain
Endometriosis involving the bladder or ureters can cause:
- Painful urination (dysuria), particularly during menstruation
- Pelvic discomfort or bladder pressure
- Blood in the urine during periods (haematuria)
Some individuals may also develop urinary urgency or incontinence.
6. Lower Back and Leg Pain
When the sciatic nerve or pelvic sidewall is involved, pain can radiate to the:
- Lower back
- Hips
- Buttocks
- Legs, especially down one side
This type of pain may mimic sciatica and is typically cyclical.
7. Upper Abdominal or Chest Pain
Less commonly, pain may be felt in the:
- Upper abdomen or under the ribs (when the diaphragm is affected)
- Chest or shoulders (if endometriosis reaches the lungs or pleura)
Thoracic endometriosis can cause chest pain, shortness of breath, or even cyclical coughing up blood (catamenial haemoptysis), though this is rare.
Potential Complications of Endometriosis Pain
Chronic pain can lead to:
- Reduced mobility and physical activity
- Fatigue and sleep disruption
- Mental health issues, including anxiety, depression, and isolation
- Relationship and sexual health difficulties
- Absenteeism from work or education
Pain may also persist even after treatment, a condition known as central sensitisation, where the nervous system becomes overly responsive to pain signals.
Misconceptions About Endometriosis Pain
Myth: Pain during periods is normal
Fact: Mild cramps can be normal, but pain that affects daily life should be evaluated by a healthcare provider.
Myth: Endometriosis pain only occurs during periods
Fact: Pain can occur at any time, including ovulation, intercourse, bowel movements, or even at rest.
Myth: The severity of pain matches disease severity
Fact: Individuals with mild disease may have severe pain, while those with advanced disease may have little or no pain.
When to Seek Medical Advice
See a GP or gynaecologist if you experience:
- Persistent pelvic or abdominal pain
- Severe period pain unrelieved by standard medication
- Painful intercourse
- Bowel or bladder symptoms around menstruation
- Fatigue, emotional distress, or disruption to daily life
Documenting your symptoms in a diary can help clinicians identify patterns and make an informed diagnosis.
Managing Endometriosis Pain
Treatment options depend on individual circumstances and may include:
- Pain relief – NSAIDs (e.g. ibuprofen), paracetamol
- Hormonal therapies – oral contraceptives, progestogens, or GnRH analogues
- Surgical intervention – laparoscopic removal of endometriosis
- Complementary therapies – physiotherapy, acupuncture, psychological support
A multidisciplinary approach often provides the best outcomes.
Conclusion
Endometriosis pain can affect many different parts of the body and significantly impact physical and emotional wellbeing. It may be localised, radiating, cyclical, or constant.
Understanding the potential pain locations helps in recognising the condition and seeking early medical advice. Accurate diagnosis and individualised treatment can significantly reduce pain and improve quality of life.
References
[1] Giudice, L.C. Endometriosis: Science and Practice
[2] Vercellini, P., et al. Clinical Management of Endometriosis
