Project Overview
Endometriosis is a disease affecting around 10% of women in their reproductive years, resulting in severe pain in the lower abdomen.
Endometriosis is the most common known cause of pelvic pain and occurs when the cells that usually line the womb are found elsewhere in the body, most commonly in the ovaries and the pelvis, but occasionally in other parts of the body such as the lungs. The most common symptoms are pelvic and abdominal pain, lower back pain and painful intercourse. Endometriosis is also associated with infertility. It affects approximately 2 million women in the UK, most of whom are diagnosed between the ages of 25 and 40, although many have been suffering for some years before diagnosis. In some cases it can have a negative impact on quality of life.
Even though there are a growing number of minority ethnic women living in the UK little is known about the experiences of women from minority ethnic groups with endometriosis. This study aims to explore the impact that living with endometriosis has on the lives of women from five minority ethnic groups, that is African Caribbean, Chinese, Greek/Greek Cypriot, Indian and Pakistani women.
An important outcome of the research will be the development of resources for use by health professionals and women from minority ethnic communities. These resources will be made available in English and community languages and should assist in improving the quality of care for minority ethnic women.
Members of the minority ethnic communities will play an important part in carrying out the project and drawing the findings together to inform the community resources. We will be collaborating with community groups and organisations and we will be carrying out group interviews with women from minority ethnic communities in Birmingham, Leicester and London. We will also carry out individual interviews with women with endometriosis from these communities as well as with health professionals involved in the care of women with endometriosis.
The study is being funded by the National Institute for Health Research. The study will be organised and undertaken by researchers from Birmingham Women’s Hospital, Birmingham City University, De Montfort University, Leicester and Middlesex University. The project is guided by a management committee and an advisory group which are committed to working towards research outcomes that will be of direct benefit to the communities concerned.
Aims of the project

To develop, in collaboration with community groups and patients, evidence based and culturally sensitive resources for women with endometriosis and to develop good practice guidance for the health professional providing services to women of minority ethnic origin
To explore the impact of the socio-cultural context on the meanings of endometriosis among minority ethnic women (African Caribbean, Chinese, Greek/Greek Cypriot, Indian and Pakistani women)
To develop and pilot a culturally appropriate resource for women with endometriosis in English, Chinese, Greek, Gujarati and Urdu.
To develop and pilot good practice in the provision of culturally competent care for providers of endometriosis services in primary and secondary care


