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The role of the specialist nurse in supporting patients with endometriosis self-management

Deb Panes 21 Mar 2022

March is Endometriosis awareness month, and this offers the opportunity to raise awareness of the condition and the impact it can have on women living with it. The specialist nurse is a key healthcare practitioner in providing expert care to all women with endometriosis.

March is endometriosis awareness and action month, and many events are taking place globally to raise awareness of this chronic and often debilitating disease. Research continues to highlight that 1 in 10 women suffer with this common gynaecological condition and the average time to diagnosis is 8 years. I have been an endometriosis nurse in a specialist centre for over 7 years and despite there being new guidelines, enquiries, research, more media coverage, and an increasing numbers of specialist treatment centres the headlines have not vastly improved. Women are still battling to get a diagnosis, not being offered the treatment they expect and experiencing lengthy waits for surgery.

It has been and continues to be an enormous challenge working as an endometriosis nurse over the last two years. Many patients have had surgery cancelled, been unable to get consultations with their GP during flares ups, experienced delays in accessing repeat prescriptions, delayed hospital appointments, social isolation, and fear of how catching covid may make their condition worse. Contact from patients by phone and email has noticeably risen over this time. Much of the contact I receive now is not just a quick enquiry about medication side effects or treatment options but complex stories of physical, psychological, and emotional symptoms.

It is understandable how patients are feeling let down by treatment delays and cancelled appointments - with many choosing to vent their distress on social media or offload to their nurse specialist. There have been times when I have felt lost with and no quick fixes to offer my patients at their time of crisis, despite the overwhelming urge to answer all their questions and resolve all their problems. At times like this the supportive communication skills of the specialist nurse have been vital. Often all I have done is listened, validated their symptoms, acknowledged their concerns, and created a management plan with them.

Lots of patients have taken the opportunity the pandemic has given them to focus on the self-management of their condition. They understand that surgery will be a while off or the hormones aren’t helping and think “what else can I do?”. I find it immensely satisfying spending time with patients discussing self-management strategies and signposting them. What is the best exercise for me to do? how can I lose weight? what are the specific diets that help? who can I talk to get support for my mental health? are their support groups I can join? should I have acupuncture? Many patients have been overwhelming grateful for the role the nurse specialists plays and the time I’ve spent talking with them or even simply taking the time to email them a link to resources.

The principle clinical roles of the specialist nurse certainly include coordinating care and managing treatment. But for patients with chronic health conditions such as endometriosis the need to provide support with long term self care is essential. With expert knowledge on the condition the specialist nurse can identify both the physical and emotional needs of the patient and provide focused support and help patients apply self-management principles.

Further resources:

Deb Panes

Endometriosis Nurse Practitioner, University Hospitals Bristol and Weston NHS Trust

Experienced gynaecology nurse with an interest in endometriosis

Page last updated - 21/03/2022