Stage 4 endometriosis is the most severe form of the disease. It is classified based on the location, depth, and spread of endometrial lesions (implants), as well as the presence of scar tissue (adhesions) and ovarian cysts.
Endometriosis is a chronic condition where tissue similar to the lining of the uterus (the endometrial stroma and glands) grows in locations outside the womb. This tissue responds to hormonal changes, leading to inflammation, pain, and sometimes scarring.
How Common Is Endometriosis?
An estimated 10% of women and people assigned female at birth during their reproductive years are affected by endometriosis worldwide—roughly 190 million individuals [1].
Stage 4 is the least common but most extensive form of the condition. The classification is based on the revised American Society for Reproductive Medicine (rASRM) staging system, ranging from Stage 1 (minimal) to Stage 4 (severe) [2].
Staging helps clinicians plan treatment but does not always reflect the intensity of symptoms.
Where Endometriosis Occurs in Stage 4
In stage 4 endometriosis, lesions are widespread and often deeply embedded in surrounding structures. Common anatomical sites affected include:
- Both ovaries – often with large endometriomas (chocolate cysts)
- Fallopian tubes – may be blocked or adhered to other organs
- Uterus – frequently fixed due to adhesions
- Bowel and rectum – deep lesions may disrupt function
- Bladder – may be affected in severe cases
- Peritoneum – the abdominal cavity lining
Organs may be fused together in a condition called a “frozen pelvis” due to dense scarring.
Common Symptoms of Stage 4 Endometriosis
While symptoms vary, common complaints include:
- Severe pelvic pain, often chronic and menstruation-related
- Heavy or irregular periods
- Pain during or after sex
- Digestive symptoms like constipation, diarrhoea, painful bowel movements
- Bladder pain or discomfort during urination
- Extreme fatigue
- Infertility
Note: Some with Stage 4 may have mild or no symptoms. Severity of symptoms doesn’t always correlate with disease stage.
How Is Stage 4 Diagnosed?
Diagnosis is confirmed via laparoscopy, a minimally invasive surgical procedure using a camera to inspect the pelvic area. During the procedure, clinicians evaluate:
- Depth and number of lesions
- Extent of adhesions
- Size/number of ovarian cysts
- Organ displacement or fusion
Biopsies may be taken for microscopic confirmation. Ultrasound and MRI can detect endometriomas and deep disease but are not definitive for diagnosis.
Complications and Advanced Features
Stage 4 endometriosis can lead to:
- Large ovarian cysts that may rupture
- Severe adhesions affecting organ mobility
- Distorted pelvic anatomy
- Infertility due to tubal damage or blockage
- Bowel/bladder obstruction in extreme cases
- Chronic pain syndrome
Psychological effects like depression, anxiety, and isolation are also common due to long-term pain and reduced quality of life.
Misconceptions About Stage 4 Endometriosis
Myth: All Stage 4 patients have severe symptoms
Fact: Some have minimal or no symptoms.
Myth: Surgery is always necessary
Fact: Surgery is diagnostic but not the only treatment path. Medical management is often the first step.
Myth: Stage 4 means guaranteed infertility
Fact: Many can conceive naturally or with fertility treatments like IVF.
Managing Stage 4 Endometriosis
Management is personalised and may include:
1. Hormonal Treatments
These aim to reduce or stop menstruation:
- Combined oral contraceptives
- Progestogens
- GnRH analogues (agonists or antagonists)
- Hormonal IUDs (e.g. Mirena)
Hormones help control symptoms but are not curative.
2. Surgical Management
May involve:
- Removing lesions and adhesions
- Draining or excising cysts
- Restoring anatomy
Laparoscopic surgery is preferred. A multidisciplinary team may be needed for bowel/bladder involvement.
3. Pain Management and Support
- NSAIDs and pain relievers
- Pelvic physiotherapy
- Cognitive behavioural therapy (CBT)
- Diet and stress management
4. Fertility Treatment
- Surgical preparation to improve fertility outcomes
- IVF and other ART options
- Early referral to a fertility specialist is key
When to Seek Help
If you have persistent pelvic pain, heavy periods, or difficulty conceiving, consult your GP. Ask for referral to a specialist in endometriosis.
Remember
Stage 4 is the most advanced form of endometriosis, involving extensive damage. But with proper treatment and support, many individuals find relief and maintain a good quality of life.
Seek medical attention early and advocate for yourself to access the care you need.
References
[1] Giudice, L.C. Endometriosis: Science and Practice
[2] Vercellini, P., et al. Clinical Management of Endometriosis
[3] Rizk, B., et al. Endometriosis and Infertility: A Comprehensive Guide
