Dr Hazel Wallace BSc MSc MBBCh ANutr
Former NHS Doctor, Nutritionist, Author and Founder of The Food Medic
Endometriosis affects 10% of people who menstruate globally. Uncover the challenges, disparities and urgent need for prioritised research.
Globally, around 1.9 billion people menstruate and, on average, have a period from age 13 to 51 every 28 days (give or take). This equals 456 periods over 38 years of their life.1 Approximately 10% of those people (178 million) experience debilitating symptoms monthly, including chronic pelvic pain, heavy bleeding, painful sex and infertility, caused by the disease endometriosis.2
Endometriosis neglect and racial disparities
Until recently, endometriosis remained relatively invisible in the media and essentially ignored by government policy. Moreover, even though more women are affected by endometriosis in the UK than diabetes — taking, on average, 7.5 years to get a diagnosis3 — it is even worse for black women. Research suggests they are 50% less likely to be diagnosed with endometriosis compared to white women.4
As a doctor, I can confirm that endometriosis receives disproportionately less attention in medical school, compared to diseases with similar or lower prevalence in our population.
Reasons for diagnosis delay
Delays have largely been attributed to the current gold-standard diagnosis method, which is laparoscopic (keyhole) surgery to see inside the pelvic cavity, visualising the endometriosis.
However, I suspect that the normalisation of menstruation pains also plays a part. A recent inquiry found that before receiving a diagnosis, over 58% of women visited their GP 10 or more times with symptoms; 53% visited A&E with symptoms; and 21% visited doctors in hospital 10 or more times with symptoms.5 Many expressed a feeling of dismissal and disbelief of their symptoms by health professionals.
Improving endometriosis care
As a doctor, I can confirm that endometriosis receives disproportionately less attention in medical school — and clinical practice (except specialist centres) — compared to diseases with similar or lower prevalence in our population.
For too long, endometriosis has been neglected on the health agenda, with insufficient funding and research. We mustdo better. Quoting researcher Nicky Hudson: “The wilful ignorance around women’s lived experiences of endometriosis and long-standing silencing of their claims have shaped, and continue to shape, the ways in which the condition has come to be defined, indelibly marking it as a disease which is complex, difficult and enigmatic.”
Learn more about endometriosis from Royal College of Obstetricians and Gynaecologists, Endometriosis UK or NHS.
References
[1] Regional Health-Americas TL. Menstrual health: a neglected public health problem. Lancet Reg Health Am. 2022 Nov 11;15:100399. doi: 10.1016/j.lana.2022.100399. PMID: 36778065; PMCID: PMC9903918.
[2] Rogers PA, D’Hooghe TM, Fazleabas A, Gargett CE, Giudice LC, Montgomery GW, Rombauts L, Salamonsen LA, Zondervan KT. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci. 2009 Apr;16(4):335-46. doi: 10.1177/1933719108330568. Epub 2009 Feb 5. PMID: 19196878; PMCID: PMC3682634.
[3] NICE. National Institute for Health and Clinical Excellence; 2017. Endometriosis: Diagnosis and Management. Full Guideline. https://www.nice.org.uk/guidance/ng73.
[4] Bougie O, Healey J, Singh SS. Behind the times: revisiting endometriosis and race. Am J Obstet Gynecol. 2019 Jul;221(1):35.e1-35.e5. doi: 10.1016/j.ajog.2019.01.238. Epub 2019 Feb 6. PMID: 30738028.
[5] Endometriosis in the UK: time for change an APPG on Endometriosis Inquiry Report 2020 (PDF)
[6] Hudson N. The missed disease? Endometriosis as an example of ‘undone science’. Reprod Biomed Soc Online. 2021 Aug 13;14:20-27. doi: 10.1016/j.rbms.2021.07.003. PMID: 34693042; PMCID: PMC8517707.
