
Endometriosis — Diagnosis, Pain & Fertility
Endometriosis is tissue like the lining of the womb growing outside the uterus, most often on the ovaries and pelvic peritoneum; it causes inflammation, pain and infertility
About 10% of women of reproductive age are affected, roughly 190 million worldwide (WHO)
It takes on average 4 to 12 years to be diagnosed; painful periods are too often dismissed as normal
There is no cure; treatment controls symptoms and protects fertility, and it can start without surgery
25–50% of women with infertility have endometriosis (WHO)
Lesions respond to hormones, bleed and cause inflammation and scarring; deep endometriosis means lesions more than 5 mm below the peritoneal surface
Main forms: superficial peritoneal disease, ovarian endometrioma (the “chocolate cyst”), and deep endometriosis involving bowel, bladder, ureter or uterosacral ligaments
Most likely mechanisms: retrograde menstruation (Sampson’s theory) together with immune, hormonal and genetic factors; the cause is not fully known (from memory)
Risk factors: family history, early menarche, short cycles, and conditions that obstruct menstrual outflow
It can occur outside the pelvis, in the abdomen or chest, and may be present after menopause
Severe period pain (dysmenorrhoea)
Deep pain during sex (dyspareunia)
Chronic pelvic pain; shoulder-tip pain
Painful bowel movements (dyschezia)
Cyclical bloating, nausea or diarrhoea
Painful urination at periods
Heavy periods or spotting
Difficulty getting pregnant
Tiredness and low mood
School or work absence
Effects on relationships and sex
Anxiety and depression
Examination can find deep nodules or an endometrioma, but its accuracy is low; a normal examination does not rule it out
Use ultrasound or MRI; a negative scan does not exclude superficial disease
Do not use blood, menstrual or tissue biomarkers (including CA-125) to diagnose it
Laparoscopy is no longer the gold standard; use it when imaging is negative and empirical treatment failed or is not suitable. Histology confirms lesions but a negative result does not exclude disease
Consider the Endometriosis Fertility Index (EFI) when planning fertility after surgery
Adolescents: suspect it with chronic or cyclical pelvic pain, school absence, family history, early menarche or an obstructed outflow tract
Use transvaginal ultrasound where appropriate; CA-125 is not recommended
First line: hormonal contraceptive or progestogen, including the LNG-IUS; NSAIDs when hormones are not an option
Tell adolescents how the disease can affect ovarian reserve
After menopause: disease can remain active; surgery may confirm the diagnosis, and aromatase inhibitors may help if surgery is not possible
| Step | Options | Points to remember |
|---|---|---|
| 1 · Analgesia | NSAIDs or other analgesics, alone or together | Offer from the start; take with food; check kidney and stomach risks (from memory) |
| 2 · Hormones, first line | Combined pill (may be taken continuously for period pain), progestogens (for example dienogest), LNG-IUS, etonogestrel implant | Hormonal treatment is an option for all; use shared decision-making. Irregular bleeding is common with progestogens |
| 3 · Second line | GnRH agonists with combined add-back therapy; GnRH antagonists may be considered | Add-back therapy prevents bone loss; antagonists are a second-line option for pain |
| 4 · Refractory pain | Aromatase inhibitors, alone or with other hormones | For pain that has not responded to other medical or surgical treatment; may not suit women who want to conceive |
| Supportive care | Physiotherapy, cognitive behavioural therapy, pain services | Include psychological support, especially with deep or ovarian disease |
Surgery is one option for pain, by laparoscopy; excision may be considered over ablation
Endometrioma: cystectomy rather than drainage and coagulation, taking care to protect the ovary
Deep endometriosis: surgery may reduce pain and improve quality of life; refer to a centre of expertise
Hysterectomy: only for women who no longer want children and did not respond to conservative treatment; it may not cure the symptoms
Recurrence is common without postoperative hormonal treatment, so discuss it before the operation
Hormonal suppression does not improve fertility; do not use it for that purpose, and do not use it after surgery just to raise pregnancy rates
Mild disease (stage I/II): laparoscopic surgery may be offered; IUI with ovarian stimulation may be used
Endometrioma or deep disease: surgery may help natural conception in symptomatic women, but weigh the risk to ovarian reserve
Assisted reproduction (IVF/ICSI) is indicated for tubal damage, male factor, a low EFI, or failure of other treatment; it does not raise the recurrence rate
Do not routinely operate before IVF for stage I/II disease or endometrioma; operate for pain or if follicles cannot be reached
Discuss fertility preservation when ovarian disease is extensive; its benefit is not yet certain
Telling a girl that painful periods are normal
Waiting for laparoscopy before starting treatment
Relying on CA-125 or a normal scan to rule it out
Using GnRH analogues without add-back therapy
Treating the scan and ignoring the woman’s pain and distress
Operating on an endometrioma before IVF without a clear reason
Using oestrogen-only hormone therapy after menopause in a woman with endometriosis

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