‘How are your periods?’ A simple question to find a complex condition.

Naga Munchetty, a well known newsreader and journalist, has been raising the public profile of endometriosis through a combination of radio broadcasts and written articles. Additionally, she has given evidence to the Women and Equalities Committee as part of an enquiry into women’s reproductive health. 

One of the key issues with endometriosis is the long time taken to reach a diagnosis. On average there is a lag of 7.5 years from presentation to diagnosis (CKS). During this window women are often left without effective management of their symptoms. Endometriosis can have a wide-ranging impact on all areas of life; from missed education and employment opportunities, to relationships and social life. Further, progression of disease can lead to establishment of complex chronic pain, scarring and impaired fertility. Naga herself reports a 32 year wait for diagnosis of the related condition adenomyosis during which she suffered severe pain, heavy bleeding, and insomnia. 

In her recent article Naga talks to scientists from The Centre for Reproductive Health at the University of Edinburgh about their interesting research into diagnostic tools for detecting endometriosis, exploring analysis of menstrual blood and MRI techniques. However, these are only at an experimental stage at present so what can we do now to improve the diagnosis of endometriosis? Dame Lesley Regan (Women’s Health Ambassador for England and Professor of Obstetrics and Gynaecology) suggests we need to start by encouraging people to talk more openly, with the simple question ‘How are your periods’? The taboo around discussing periods can otherwise lead people to think that symptoms such as disabling dysmenorrhoea or flooding equates to just ‘normal periods’ and wrongly assume they just must live with it. 

A timely clinical practice article in this month’s BJGP ‘Assessment and management of endometriosis in young people in primary care’ provides a helpful focus on early diagnosis, reminding us that symptoms often begin in the teenage years. This challenges the incorrect notion that it takes a number of years after menarche to develop. For the first time the European Society of Human Reproduction and Embryology (ESHRE) guidelines 2022 contain recommendations for diagnosis of endometriosis in adolescents, including those under the age of 17. They highlight the risk factors most relevant to young people; namely family history, obstructive genital malformations, early menarche and a short menstrual cycle. Key symptoms suggestive of endometriosis in adolescents include chronic or acyclical pelvic pain (especially combined with nausea), dysmenorrhoea, dyschezia, dysuria and chronic cyclical pelvic pain. A full holistic history is important- endometriosis should be a differential for young women presenting with regular absence from school, use of oral contraceptives for management of dysmenorrhea, or significant fatigue. 

So, is raising awareness enough? An interesting article published in the BJGP 2021 looked at the perspectives of GPs navigating possible endometriosis in primary care. They conducted semi-structured interviews based on a clinical scenario suggestive of endometriosis. Whilst knowledge was a pre-requisite, many other factors influencing diagnosis were identified. One of the identified barriers was menstrual stigma and inappropriate normalization of menstrual pain in both the community and clinicians. This suggests Dame Regan’s advice to routinely ask about periods could add value. However, a major challenge noted in this study is the multisystem and heterogeneric presentation of endometriosis. Symptoms can range from more classically gynaecological (e.g. dysmenorrhoea, dyspareunia, pelvic pain), to GI (e.g. dyschezia), to MSK (back pain/ sciatica), to GU (e.g. dysuria, increased urinary frequency, cyclical haematuria) to non-specific systemic symptoms such as fatigue. This can contribute to diagnostic delays. 

The takeaway message is that the delay in diagnosis of endometriosis is multifactorial, with clinician awareness being one part of the overall picture. Both patients and clinicians agree that the speed of diagnosis of endometriosis needs to be improved. In time, hopefully new diagnostic techniques will be developed. At present, we need to be aware of the diverse ways in which endometriosis can present. Asking about periods should be a routine part of history taking, including for patients presenting with GI, GU or even MSK symptoms. Finally, and most importantly, we need to take care to validate distressing symptoms especially when the diagnosis is not yet clear. 

If this has triggered a ‘learning need’ for you, for NB Plus members we have a recently updated CPD module on endometriosis and we also cover this important topic on our current Hot Topics GP Update course, available now on demand.