Endometriosis
Summary
Endometriosis is a chronic, oestrogen-dependent condition characterised by the presence of endometrial-like tissue (glands and stroma) outside the uterus. Common sites include the ovaries (Endometrioma – "Chocolate Cyst"), Pouch of Douglas, Uterosacral ligaments, Bowel, and Bladder. The ectopic tissue undergoes cyclical bleeding, causing chronic inflammation, fibrosis, and adhesions. Classic symptoms include Cyclical pelvic pain, Dysmenorrhoea (Painful periods), Deep dyspareunia (Pain deep during sex), and Infertility. Diagnosis is often delayed; the Gold Standard is Laparoscopy with histological confirmation. Management options include Analgesia, Hormonal suppression (COCP, Mirena IUS, GnRH analogues), and Surgical excision/ablation. Severe disease (Deep Infiltrating Endometriosis – DIE) involving bowel or bladder requires specialist MDT management. ESHRE 2022 guidelines provide evidence-based guidance.
Key Facts
- Definition: Endometrial-like tissue outside the uterus.
- Incidence: ~10% of reproductive-age women.
- Sites: Ovaries (Endometrioma), Pouch of Douglas, Uterosacral ligaments, Bowel, Bladder.
- Classic Symptoms: Cyclical Pelvic Pain, Dysmenorrhoea, Deep Dyspareunia, Infertility.
- Gold Standard Diagnosis: Laparoscopy + Biopsy.
- Treatment: Hormonal (COCP, Mirena, GnRH Analogues). Surgical Excision.
Clinical Pearls
"The 4 Ds": Dysmenorrhoea, Deep Dyspareunia, Dyschezia (Painful defecation), Difficulty conceiving (Infertility).
"Chocolate Cyst = Endometrioma": Dark, old blood within an ovarian cyst from cyclical bleeding.
"Diagnostic Delay Averages 7-10 Years": Endometriosis is often normalised or misdiagnosed.
"GnRH Analogues = Chemical Menopause": Effective but side effects limit long-term use.
Why This Matters Clinically
Endometriosis is common and debilitating. It significantly impacts quality of life and fertility. Early recognition reduces diagnostic delay.
Incidence
- Prevalence: ~10% of reproductive-age women.
- Infertility Population: ~25-50% of infertile women have endometriosis.
- Peak Age: 25-35 years.
Risk Factors
| Factor | Notes |
|---|---|
| Early Menarche | Longer lifetime oestrogen exposure. |
| Short Menstrual Cycles | More frequent menstruation. |
| Heavy Menstrual Flow | |
| Nulliparity | |
| Family History | First-degree relative: 7x risk. |
| Müllerian Anomalies | Obstructed outflow. |
Theories
| Theory | Mechanism |
|---|---|
| Sampson's Theory (Retrograde Menstruation) | Endometrial tissue refluxes through Fallopian tubes during menstruation and implants on peritoneal surfaces. Most widely accepted. |
| Coelomic Metaplasia | Peritoneal cells differentiate into endometrial cells. |
| Lymphatic/Vascular Spread | Explains distant sites (e.g., Lungs). |
| Stem Cell Theory | Bone marrow stem cells differentiate into endometrial tissue. |
| Immune Dysfunction | Failure to clear ectopic tissue. |
Oestrogen Dependence
- Endometriotic tissue expresses oestrogen receptors.
- Local oestrogen production (Aromatase).
- Regresses after menopause.
| Site | Frequency | Notes |
|---|---|---|
| Ovaries (Endometrioma) | Very Common | "Chocolate cyst" – Old blood. |
| Pouch of Douglas | Very Common | Nodules. Uterosacral ligaments. |
| Pelvic Peritoneum | Common | Powder-burn lesions. Red, White, Blue lesions. |
| Uterosacral Ligaments | Common | Nodularity on exam. |
| Bowel (Rectosigmoid) | ~10-20% | Deep Infiltrating Endometriosis (DIE). Catamenial symptoms. |
| Bladder | ~5% | DIE. Haematuria during menses. |
| Vagina / Rectovaginal Septum | Palpable nodules. | |
| Distant Sites (Rare) | Lungs, Diaphragm, Umbilicus, Surgical Scars. | Catamenial pneumothorax. |
Symptoms (The 4 Ds)
| Symptom | Notes |
|---|---|
| Dysmenorrhoea | Painful periods. Often severe, worsens over time. |
| Deep Dyspareunia | Pain deep inside during sex (Uterosacral involvement). |
| Dyschezia | Painful defecation (Bowel involvement). |
| Difficulty Conceiving | Infertility (~30-50%). Adhesions, Altered pelvic anatomy, Peritoneal factors. |
Other Symptoms
| Symptom | Notes |
|---|---|
| Chronic Pelvic Pain | Non-cyclical in advanced disease. |
| Menorrhagia | Heavy periods (Often co-exists with Adenomyosis). |
| Fatigue | |
| Bladder Symptoms | Frequency, Urgency (Bladder involvement). |
| Cyclical Rectal Bleeding | Bowel endometriosis. |
Examination
| Finding | Notes |
|---|---|
| Often Normal | |
| Tender Nodules (Uterosacral) | On bimanual exam (Esp. during menstruation). |
| Fixed Retroverted Uterus | Adhesions. |
| Adnexal Mass | Endometrioma. |
| Visible Lesions | Vagina, Cervix (Rare). |
| Stage | Description |
|---|---|
| I – Minimal | Few superficial implants. |
| II – Mild | More implants. Superficial. <5cm. |
| III – Moderate | Deep implants. Small endometriomas. Adhesions. |
| IV – Severe | Large endometriomas. Extensive adhesions. Frozen pelvis. |
Note: rASRM score does NOT correlate well with symptoms or pain.
First-Line
| Investigation | Purpose |
|---|---|
| Clinical Assessment | History of 4 Ds. Examination. |
| Pelvic Ultrasound (TVUSS) | Endometriomas ("Ground glass" appearance). May miss superficial disease. |
Specialist
| Investigation | Purpose |
|---|---|
| MRI Pelvis | Deep Infiltrating Endometriosis (DIE). Bowel/Bladder involvement. |
| Laparoscopy | Gold Standard. Diagnosis + Treatment. Histological confirmation (Endometrial glands/stroma). |
Laparoscopy is required for definitive diagnosis, but empirical treatment is often started based on clinical suspicion.
Tumour Markers
| Test | Notes |
|---|---|
| CA-125 | Often elevated. Non-specific. NOT diagnostic. May correlate with disease burden. |
Principles
- Multidisciplinary Approach (Gynaecology, Pain team, Fertility specialist if indicated, Colorectal/Urology for DIE).
- Individualized treatment based on symptoms, fertility wishes, and severity.
- Chronic disease management (Long-term).
Conservative / Supportive
| Intervention | Notes |
|---|---|
| Exercise / Lifestyle | May help pain. |
| Psychological Support | Chronic pain. Impact on QoL. |
| Complementary Therapies | Heat, Acupuncture (Limited evidence). |
Medical (Hormonal Suppression)
| Drug | Mechanism | Notes |
|---|---|---|
| Simple Analgesia | NSAIDs, Paracetamol. | First-line for pain. |
| COCP (Continuous) | Suppresses ovulation. Stabilises endometrium. | Often first-line. Can use continuously (No pill-free week) to reduce withdrawal bleeds. |
| Progestogens (Oral/Injectable) | Decidualisation then atrophy. | Norethisterone, Medroxyprogesterone. |
| Mirena IUS (LNG-IUS) | Local progestogen. Endometrial atrophy. | Effective. Especially for adenomyosis. |
| GnRH Agonists (e.g., Goserelin) | Downregulates hypothalamic-pituitary axis. "Chemical Menopause". | Very effective. Limited to 6 months due to bone loss and menopausal side effects. Add-back HRT may allow longer use. |
| GnRH Antagonists (e.g., Elagolix) | Competitive inhibition. Oral option. | Newer. Dose-dependent oestrogen suppression. |
| Aromatase Inhibitors (e.g., Letrozole) | Blocks local oestrogen production. | For refractory disease. Off-label. Research ongoing. |
Surgical
| Procedure | Indication | Notes |
|---|---|---|
| Laparoscopy – Excision/Ablation | Diagnosis + Treatment. Symptom relief. Fertility improvement. | Excision preferred over ablation (More complete removal). |
| Cystectomy (Endometrioma) | Large endometriomas. Fertility planning. | Strip cyst wall. Risk to ovarian reserve. |
| Deep Excision (DIE) | Bowel/Bladder involvement. | Specialist MDT. May involve colorectal/urology surgeons. |
| Hysterectomy +/- BSO | Refractory cases. Family complete. | Definitive if ovaries removed. Risk of recurrence if ovaries remain. |
Fertility
| Scenario | Option |
|---|---|
| Mild Disease | Conservative. May conceive naturally. |
| Stage III-IV / Fallopian Tube Involvement | Consider IVF. |
| Endometrioma | Cystectomy may be required before IVF. Discuss impact on ovarian reserve. |
| Complication | Notes |
|---|---|
| Chronic Pelvic Pain | |
| Infertility | ~30-50%. |
| Adhesions | Frozen pelvis. Bowel obstruction. |
| Endometrioma Rupture | Acute abdomen. Chemical peritonitis. |
| Ovarian Cancer Risk | Slightly increased (Endometrioid, Clear cell). |
| Bowel/Bladder Involvement | Stricture. Bleeding. |
| Impact on Mental Health | Depression. Anxiety. Quality of life. |
| Scenario | Outcome |
|---|---|
| Medical Treatment | Symptom relief. Does NOT cure. Recurrence on stopping treatment. |
| Surgical Excision | High success for pain relief. Recurrence ~20-50% at 5 years. |
| Hysterectomy + BSO | Definitive if ovaries removed. Menopause symptoms. |
| Fertility | Improved after surgery. IVF success rates reasonable. |
| Feature | Adenomyosis |
|---|---|
| Definition | Endometrial tissue WITHIN the myometrium (Muscle wall of uterus). |
| Symptoms | Dysmenorrhoea, Menorrhagia, Enlarged uterus. |
| Diagnosis | TVUSS (Asymmetric myometrium, Heterogeneous texture). MRI. |
| Treatment | Mirena IUS. Hormonal. Hysterectomy (Definitive). |
Endometriosis and Adenomyosis often coexist.
Key Guidelines
| Guideline | Organisation | Notes |
|---|---|---|
| ESHRE Guideline (2022) | European Society of Human Reproduction and Embryology | Gold Standard. |
| NICE NG73 | NICE | Endometriosis: Diagnosis and Management. |
Scenario 1:
- Stem: A 28-year-old woman presents with severe dysmenorrhoea, deep dyspareunia, and 2 years of trying to conceive. Pelvic USS shows a 5cm "ground glass" cyst on the left ovary. What is the likely diagnosis?
- Answer: Endometriosis with Endometrioma ("Chocolate Cyst").
Scenario 2:
- Stem: What is the Gold Standard investigation for definitive diagnosis of endometriosis?
- Answer: Laparoscopy with Histological Biopsy.
Scenario 3:
- Stem: A patient with endometriosis wishes to avoid surgery. What hormonal treatments can suppress the disease?
- Answer: COCP (Continuous), Progestogens, Mirena IUS, GnRH Agonists ("Chemical Menopause").
| Scenario | Urgency | Action |
|---|---|---|
| Suspected Endometriosis (4 Ds) | Routine | GP trial of hormonal treatment. Refer Gynaecology. |
| Endometrioma on Scan | Routine | Gynaecology. |
| Infertility with Suspected Endometriosis | Urgent | Fertility Clinic / Gynaecology. |
| Deep Infiltrating Endometriosis (Bowel/Bladder) | Urgent | Specialist Endometriosis Centre (MDT). |
| Acute Abdomen (Rupture) | Emergency | A&E. Surgical review. |
What is Endometriosis?
Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries, pelvis, or bowel. This tissue responds to hormones and causes pain and inflammation.
What are the symptoms?
- Very painful periods.
- Pain during or after sex.
- Difficulty getting pregnant.
- Pain when going to the toilet during your period.
How is it treated?
- Painkillers.
- Hormonal treatments: Pill, Coil (Mirena), Injections.
- Surgery: Keyhole surgery to remove the tissue.
Key Counselling Points
- It's Not In Your Head: "Endometriosis is a real medical condition."
- Chronic Condition: "There is no cure, but symptoms can be managed."
- Fertility: "Many women with endometriosis can still conceive, with or without help."
| Standard | Target |
|---|---|
| Referral to specialist centre for DIE | 100% |
| Laparoscopic diagnosis confirmed histologically | >0% |
| Hormonal treatment offered if not trying to conceive | >0% |
| Diagnostic delay <3 years | Aspirational |
- Sampson (1927): Proposed retrograde menstruation theory.
- Laparoscopic Era (1970s-80s): Enabled diagnosis and surgical treatment.
- GnRH Agonists (1980s): Introduced for medical management.
- Recent Advances: GnRH antagonists (Oral), Endometriosis centres, Research into biomarkers.
- NICE NG73. Endometriosis: Diagnosis and Management. nice.org.uk
- ESHRE Guideline. Endometriosis (2022). eshre.eu
Last Reviewed: 2025-12-24 | MedVellum Editorial Team
Medical Disclaimer: MedVellum content is for educational purposes and clinical reference. If you have symptoms of endometriosis, please consult a healthcare professional.