Affecting approximately 2-10% of women of reproductive age, endometriosis can cause debilitating pain, problems with fertility and have a devastating effect on the lives of women with the condition and those around them. As we mark Endometriosis Awareness Week 2018 (3-11 March), we consider how we can continue to raise awareness and improve the care and support of those affected by the condition.
The Centre for Reproduction Research has been studying endometriosis for several years; our work includes the ENDOCUL study, which examines the ways the condition affects women from Black and Minority Ethnic groups and how cultural barriers might prevent women from receiving appropriate care, and our ESRC-funded ENDOPART study. This latter study demonstrated the complex and multifaceted effects the condition can have on not only women, but also partners and couple relationships. In partnership with leading UK charity Endometriosis UK, this research led to the development of couple-focused resources including online information and support (written text and a film) and a support group session. Our current research activity now involves investigating endometriosis specialist nursing and how this can be better developed to meet women’s needs.
If you have not heard of endometriosis you are not alone. Public awareness of the condition is low and many women still suffer for years before getting a diagnosis. The condition occurs when the endometrium – the lining of the uterus – grows outside the uterus, such as in the ovaries, fallopian tubes or elsewhere in the pelvis. It might also grow on the bladder or bowel, or in some cases on other organs such as the liver or lungs. This can cause inflammation and pain, as well as adhesions and cysts. Nobody knows exactly why some women get endometriosis, and there is no definitive cure. Common symptoms include chronic pelvic pain, heavy and painful periods, fatigue, pain during sex and fertility problems. A range of treatments are available to relieve symptoms, including analgesics, hormonal treatments, and surgery. However, these treatments may cause side effects, and are often are only partially effective, or only effective in the short term. As such, finding an effective way of managing and treating the condition is an ongoing battle for many women.
A particularly enigmatic condition, the ‘gold standard’ for diagnosis is via a laparoscopy – keyhole surgery through the abdomen – and many women experience huge delays in getting a diagnosis (our review of research suggests the average delay between symptom onset and diagnosis can range from 5 to 8.9 years). Thinking that their pain is normal, or that they are simply unlucky rather than unwell, women often refrain from visiting their GP or are embarrassed to do so. Furthermore, when women do pursue investigation, whilst some report receiving excellent care, others report having their symptoms trivialised, normalised or dismissed by GPs who have little knowledge of the condition.
A condition of much uncertainty, endometriosis also affects all women differently: some women with endometriosis have few or no symptoms, whereas others experience debilitating pain and find that endometriosis affects their ability to work, socialise, and have relationships and children. In addition, the severity of symptoms does not correlate to the stage of the disease (determined by factors as location, extent, and depth of endometriosis). As such, campaigning organisations, healthcare providers and health researchers continue to ask, how can we better improve diagnosis and support for women with endometriosis?
On Wednesday 7 March we hosted a wellbeing seminar ‘Living with Endometriosis: Understanding its Impact and Management’, open to all De Montfort University staff and students. Chaired by our Centre Director, Prof Nicky Hudson, we were honoured to have Cathy Dean, an Endometriosis Clinical Nurse Specialist at The Portland Hospital, London, deliver the seminar, discussing what endometriosis is, signs and symptoms, issues with diagnosis, treatment options, and support and care for women with the condition. Following this Caroline Law, Research Fellow with the Centre, discussed the social impacts the condition can have – particularly on working lives, education and study, and having children. Questions and discussion focused on how women can access effective treatment given the variance in care across the UK, and how the new NICE guidelines Endometriosis: Diagnosis and Management should be implemented in practice – particularly what this will mean for women in terms of accessing both diagnosis and appropriate care.
Great strides have been made in recent years towards increasing awareness of endometriosis. Well-known actors such as Lena Dunham of ‘Girls’ as well as ‘Star Wars’ actor Daisy Ridley have spoken honestly and publicly about their battle with the condition. 2017 also saw our research being showcased on BBC Radio 5 Live and BBC Radio 4 Women’s Hour, as well as the publication of the first endometriosis NICE guidelines on the condition.
Endometriosis UK continue to do outstanding work in supporting those affected by the condition, and advocating for improved diagnosis procedures and better management. Within the Centre we now look forward to pursuing future research opportunities to ultimately help improve the quality of life of women with endometriosis and those around them.
More information about our research can be found here.
Links to resources and patient information provided by Endometriosis UK can also be found here.
 Culley, L, Law, C, Hudson, N, Denny, E, Mitchell, H, Baumgarten, M, Raine-Fenning, N (2013) The social and psychological impact of endometriosis on women’s lives: a critical narrative review, Hum Reprod Update, 19, 6, 625-639.
 Denny, E (2009) ‘I never know from one day to another how I will feel’: pain and uncertainty in women with endometriosis, Qual Health Res, 19, 7, 985–995.