Women's health: Endometriosis

Endometriosis is a life challenging disorder that affects around 1.5 million women and those assigned female at birth in the UK - around 1 in 10 from puberty to menopause. 

Evidence suggests that care can be delayed due to a lack of awareness and understanding of the disease amongst health care workers, which can lead to a lengthy diagnosis. 

The RCN factsheet on Endometriosis (2021) can be found by visiting the publications section.

Deb Panes, Nurse Practitioner and former Women’s Heath Forum committee member, explains more about Endometriosis on the clinical pages for RCN Magazines.

As a commissioned service within complex specialist care there are dedicated specialist centres which have been accredited by the British Society for Gynaecological Endoscopy (BSGE).

See: NHS Standard Contract for Complex Gynaecology - Severe Endometriosis Schedule 2 Service Specifications.

As part of that commissioning review, it was confirmed that women attending these centres would benefit from improved quality of care by having direct access to an endometriosis clinical nurse specialist (CNS) and BSGE accreditation of specialist centres is dependant on having an endometriosis nurse specialist in place. This role has been further recognised by the NICE guidelines (NICE, 2017), which expanded the role of the nurse supporting women with endometriosis or suspected endometriosis. This will have a future impact on the nurses who were originally employed to support complex cases.

Recognising the lack of a national standard to define this role, in 2018, the RCN Women’s Health Forum, in collaboration with Endometriosis UK and the BSGE, devised a skills and knowledge framework that would inform and enhance local practice and establish a base line standard across the UK. This publication was reviewed and updated in 2021 Clinical Nurse Specialist in Endometriosis. Deb Panes, Nurse Practitioner and former Women’s Heath Forum committee member, explains more about her role, see: The role of the specialist nurse in supporting patients with endometriosis self-management.

Defining the breadth and depth of the endometriosis clinical nurse specialist role will enhance career opportunities for nurses seeking to develop their own skills to become a CNS. It is envisaged that master's level academic learning should complement the development of this role.

Listen now to ‘How Nurses can support those suffering with Endometriosis’ (podcast)

How to become a Clinical Nurse Specialist in endometriosis

As endometriosis centres develop and expand, the CNS role is crucial in promoting smooth pathway management for women. This is an opportunity for CNS's to develop effective clinical and leadership skills through further education and training, and understanding resource management and business planning, to demonstrate the value of the endometriosis CNS role in both economic terms and patient-centred services.

Research by Norton, W. et al (July 2020) demonstrates that becoming a CNS in endometriosis can be challenging, as most nurses have additional clinical roles. The limited time dedicated to the endometriosis role, makes it difficult for nurses to achieve all the CNS role domains, especially those relating to education, creating patient support groups, raising the profile of endometriosis, developing leadership skills to enhance practice, and exercising levels of autonomy.

If you are interested in developing your role as a CNS in endometriosis, the British Society for Gynaecological Endoscopy (BSGE) nurses group may be a useful place to start. 

All-Party Parliamentary Group (APPG) on Endometriosis Group (2020) highlighted the devastating impact endometriosis can have on all aspects of a person’s life, and urged Ministers to take bold action to ensure those with endometriosis have access to the right care at the right time. See: Endometriosis in the UK: time for change. 

In March 2024, Endometriosis UK published its report ‘Dismissed, ignored and belittled,’ highlighting the need for better care in terms of diagnosis, recognition and treatment pathways.