I want to begin with something a patient said to me that I have never forgotten. She was 34, had been experiencing severe pelvic pain since she was 17, and had just received a diagnosis of stage 3 endometriosis. When I told her what it was and what it meant, she was quiet for a moment, and then she said: "So there was a name for it all along."
She had spent 17 years being told her pain was normal. That her periods were just "bad." That she was "sensitive." That pain was part of being a woman. Multiple GPs. A gynaecology referral that resulted in a normal ultrasound and discharge. An A&E visit during which a doctor noted "dysmenorrhoea" and sent her home with ibuprofen.
Seventeen years. And she was not unusual. The average time from symptom onset to endometriosis diagnosis in the UK is 8 years. For Black women, research suggests this gap is even wider.
The myth that endometriosis is rare in Black women — and why it is dangerous
For decades, a clinical myth persisted that endometriosis was predominantly a condition of white women. This belief influenced who was investigated, who was believed, and who received early diagnosis.
The evidence does not support this myth. Studies consistently show that endometriosis occurs across all ethnicities. The disparity is in diagnosis and treatment, not in prevalence.
Why the myth persisted: early research on endometriosis was conducted predominantly in white patient populations. The pattern of symptoms described was based on that population. Black women who presented with similar symptoms were less likely to be investigated and more likely to have their pain attributed to other causes — or to cultural "stoicism" about pain.
The dangerous consequence: later diagnosis means more advanced disease, more extensive scarring, greater impact on fertility, and more difficult treatment.
What endometriosis actually feels like
The symptoms of endometriosis are frequently minimised because they overlap with "normal" menstrual symptoms. The critical distinction is severity and impact on life:
Painful periods (dysmenorrhoea): Pain that is out of proportion to what ibuprofen or paracetamol can manage. Pain that causes vomiting, fainting, or inability to attend school or work. Pain that begins days before the period and continues throughout. This is not normal.
Chronic pelvic pain: Pain throughout the month, not just during periods. This often reflects the inflammatory process continuing independent of the menstrual cycle.
Pain during sex (dyspareunia): Deep pain during intercourse, particularly in certain positions. Often located in the posterior vaginal fornix, behind the uterus.
Bowel and bladder symptoms: Pain during defecation or urination that worsens around menstruation. Bloating, constipation, diarrhoea. Sometimes mistaken for IBS.
Fatigue: Often severe and underrecognised as an endometriosis symptom. Chronic inflammation and pain are exhausting.
Fertility problems: Endometriosis is found in 25–50% of women investigated for infertility.
Case study: Nadia's decade of dismissal
Nadia, 35, came to me after moving to London from Accra, where she had been living for the previous ten years. She had severe pelvic pain that had been present since her early twenties. She had seen three gynaecologists in Ghana who had each performed an ultrasound, found "nothing," and reassured her that her periods were simply painful.
Her pain score during periods was consistently 9–10 out of 10. She took up to 2,400mg of ibuprofen daily during her period — four times the standard recommended dose — just to remain functional. She had stopped attending social events during the first three days of every cycle. She had experienced two unexplained pregnancy losses.
When she came to me, I referred her directly to a specialist endometriosis centre — bypassing the standard gynaecology referral pathway, given the clear clinical picture. A diagnostic laparoscopy revealed stage 3 endometriosis with extensive adhesions and endometriomas (ovarian cysts filled with old blood, also called "chocolate cysts") on both ovaries.
She underwent excision surgery — the gold standard treatment — performed by a specialist endometriosis surgeon. Eight weeks later she described her last period as "a 3 out of 10. I didn't believe it was possible."
"I lost my twenties to this," she told me. "Every plan I made had to account for whether I would be in pain."
Diagnosis — what should actually happen
Step 1: Clinical history. A thorough clinical history — duration of pain, relationship to cycle, impact on daily life, bowel and bladder symptoms, sexual pain, fertility history — should raise suspicion strongly enough to proceed without imaging.
Step 2: Specialist referral. If endometriosis is suspected clinically, referral to a gynaecologist with an interest in endometriosis, or ideally a BSGE-accredited endometriosis centre, is appropriate. Do not accept reassurance from a normal ultrasound if symptoms are severe.
Step 3: Specialist MRI. A specialist pelvic MRI performed in an endometriosis centre (different from a standard pelvic MRI) can identify deep infiltrating endometriosis and endometriomas with reasonable accuracy in experienced hands.
Step 4: Diagnostic laparoscopy. Laparoscopy — keyhole surgery with a camera — remains the definitive diagnostic test. It can also be therapeutic: endometriosis tissue can be treated at the time of diagnosis.
Treatment options — understanding the difference between ablation and excision
Hormonal management: The combined oral contraceptive pill, progestogen-only pill, hormonal IUS (Mirena), GnRH agonists. These manage symptoms by suppressing the hormonal drivers of endometriosis. They do not remove the disease. Symptoms return when hormones are stopped.
Surgery — ablation vs excision:
Ablation (burning/destroying endometriosis tissue): Faster and technically simpler. Associated with high recurrence rates because the roots of the disease may not be fully treated. Often performed by general gynaecologists.
Excision (cutting out endometriosis tissue completely): The gold standard treatment with significantly better long-term outcomes and lower recurrence rates. Requires specialist training. Available at BSGE-accredited endometriosis centres.
If you are considering surgery, specifically ask whether excision will be performed, and by a surgeon with specialist endometriosis training. The distinction matters enormously for long-term outcomes.
Fertility: For women with endometriosis and fertility concerns, specialist reproductive medicine input alongside endometriosis management is essential. IVF success rates are reduced in endometriosis but remain meaningful.
How to advocate for yourself
If you have symptoms consistent with endometriosis, these are the things to say to your GP:
- "My pain is [X out of 10] and significantly impacts my ability to work/attend school/live normally."
- "I would like a referral to a gynaecologist with experience in endometriosis."
- "I understand a normal ultrasound does not rule out endometriosis."
If you are dismissed: ask for the clinical reasoning in writing, request a second opinion, or self-refer to an endometriosis centre. Endometriosis UK (endometriosis-uk.org) maintains a list of BSGE-accredited centres and provides excellent patient resources.
Finding an endometriosis centre
In the UK, BSGE (British Society for Gynaecological Endoscopy)-accredited endometriosis centres are specialist centres where complex endometriosis is managed by multidisciplinary teams. There are approximately 80 in England. Ask your GP for a referral to your nearest centre rather than to a general gynaecology clinic.
Sources: Endometriosis UK — Endometriosis Facts and Figures 2023; Moradi M et al, Journal of Endometriosis 2014 (diagnostic delay); Missmer SA et al, Human Reproduction 2004 (racial differences in endometriosis diagnosis); NICE Clinical Guideline NG73 — Endometriosis: Diagnosis and Management (2017, updated 2023); BSGE Accredited Centres list 2024; Seear K, Sociology of Health & Illness 2009.