A chronic menstrual health disorder, endometriosis affects around 700,000 women in Australia (Department of Health 2020). To mark Endometriosis Awareness Month, we spoke to Erica O’Donoghue MACN, a nurse leader who is advocating to raise greater awareness around this debilitating condition and has represented the Australian College of Nursing (ACN) on a steering committee about endometriosis. Erica shares with us her journey to becoming an endometriosis advocate and how nurses are shedding light on the issues and challenges associated with treating women living with endometriosis.
- Tell us a bit about yourself and your interest and experience in this area
Our own experiences often shape the reason why we became nurses or why we work in certain speciality areas. I would watch helicopters going to and from the local hospital from my bedroom window. This was the motivation I needed to do the best in my nursing studies, and I ended up working in some of the largest emergency departments in both the United Kingdom (UK) and Australia.
However, my professional training did not prepare me in dealing with period pain (dysmenorrhea), heavy menstrual bleeding (HMB) and chronic pelvic pain. It took more than a decade to receive a diagnosis of endometriosis and adenomyosis. This changed my perspective of gynaecology and I was steered into a completely different direction as compared to acute nursing. My personal experiences have empowered me to drive for change in improving this important area of nursing.
This passion for change started with the launch of the National Action Plan for Endometriosis (NAPE) at Parliament House in Canberra. NAPE outlines the need for more awareness and education, improved outcomes in clinical care and management, and to lead and develop research, such as setting up a national clinical trials network. I was able to attend and speak at the launch alongside an amazing community including key advocacy groups, multiple leading health professionals, and world-class scientists and researchers.
Although the focus is on endometriosis it can also be used in the consideration of other related conditions such as adenomyosis. Some actions from NAPE have already been actioned such as the RANZCOG Endometriosis Online Learning Resources where I am the ACN representative on their steering committee. Also, more work is yet to be implemented such as the anticipated release of Australian guidelines for endometriosis.
- What are the key aspects for nurses in supporting women who live with endometriosis?
Nurses are essential in the support of patients with endometriosis. It can be any setting where nurses may see patients with endometriosis including in emergency departments, schools, medical or surgical wards, perioperative care, mental health facilities, and fertility services.
Nurses themselves are also not immune to experiencing health issues related to endometriosis and we should support each other and encourage self-care, especially for those who are going through their own experiences with this condition.
The nursing profession has an opportunity to positively impact how patients with endometriosis are receiving care in any setting. The most difficult conversations of pain, menstruation and fertility need to be examined further and these topics approached through more open discussions.
- What are some questions that nurses can ask endometriosis patients?
Specific questions should be used to uncover any number of possible presentations to raise suspicion of endometriosis as a potential diagnosis. I wrote an article in The Hive 2019 Women’s Health edition, called ‘Time to Talk, Period’ where I listed examples of some questions that nurses can start asking patients with menstrual pain. Although these questions are related to only one symptom associated with endometriosis, the answers can provide useful information along with completing Figure 1 from The International Federation of Gynecology and Obstetrics (FIGO) System 1.
The aim is to recognise the difference between normal and abnormal menstruation in terms of frequency, duration, regularity and flow volume. The answers can also open the dialogue with the patient regarding how particular issues may have an impact on their quality of life. In Australia, the Raising Awareness Tool for Endometriosis (RATE) is an electronic resource that can be used by health care professionals and patients to ask and answer broader questions.
- Can you highlight the importance of a holistic approach in supporting women with endometriosis?
Endometriosis is a complex and chronic condition to which there is no cure. Patients can be suspected to have endometriosis based on their history and complaints, but there must be an awareness of risk factors and the variation of presentations to raise suspicion. A physical examination and/or ultrasound can show evidence of endometriosis but is not always reliable as ‘lesions’ may not be seen.
Surgery is the ‘gold standard’ approach to confirm the diagnosis and involves treatment of ‘lesions’ of the disease, but the level of expertise of the surgeon can determine if ‘lesions’ are identified and ablated or excised. Also, not all patients will be formally diagnosed or may have recurrence after surgery.
A holistic approach is needed from the beginning to address the physical signs and symptoms and all aspects of a patients’ quality of life including supporting employment or study, maintaining social wellbeing or connection to community, or becoming pregnant and have a family.
- What else can nurses do in order to spread awareness around endometriosis?
There are many activities that nurses can do to spread awareness of endometriosis. Keep in mind that it depends on what activity each nurse is comfortable in undertaking or how much their organisation can provide in terms of resources and ability to incorporate into the nursing role. This can even extend to other activities such as through research, policy or the media and for different target audiences such as nurses, patients or the public.
- What role do nurses play in treating women within culturally diverse settings?
Nurses should incorporate gender and cultural equity into their care due to the stigma and taboo of menstruation or period pain. Endometriosis is mostly considered to be a female gender issue, however, the NAPE identifies that it can also affect transgender, non-binary, and gender-diverse people assigned female at birth.
I believe that when gathering patient admission details, there could be more to identify gender preferences alongside cultural information. This enables nurses to tailor their care accordingly. Nurses also need to be aware of different ways that pain is expressed and views regarding menstruation from different cultural backgrounds. With this knowledge, nurses can aim to reduce the potential isolation or vulnerability and assist with overcoming any barriers for their patients.
- How can nurses educate themselves about this condition?
Patients with endometriosis are often well informed and can be an invaluable source of learning, especially when asked to share their knowledge and experiences of the condition. Another informal learning option is to watch the ‘Shared Perspectives’ videos from EndoActive which covers a wide range of aspects to consider in patients with endometriosis.
For more formal professional development, ACN provides the Endometriosis and Pelvic Pain Course as a single unit of study and as part of the Graduate Certificate in Acute Care Nursing or Graduate Certificate in Community and Primary Health Care Nursing.