Introduction
Endometriosis is a chronic, inflammatory condition affecting 10% of the
reproductive age group[1-3]. Endometriosis can be
associated with debilitating symptoms including pain and
subfertility[3-5]. The aetiology of endometriosis
remains unclear and is probably multifactorial, involving hormonal,
immunological and environmental factors[6].
Endometriosis is ‘incurable’, therefore numerous medical and surgical
treatment options, aimed at suppression of symptoms and prevention of
disease progression, exist ranging from hormonal therapies to
laparoscopic excision or ablation[4, 5, 7, 8]. An
average delay of 10 years between onset of symptoms and formal diagnosis
has been reported. Whilst many disease related factors are known to
contribute to this issue[9], a lack of patient
awareness of endometriosis is known to play a major role, as does
accessibility of high quality patient information[4,
10]. Unsurprisingly, patients who lack information experience higher
levels of emotional distress when diagnosed with
endometriosis[2]. This, in turn, contributes to
delays in diagnosis as patients may be unaware of the significance of
their symptoms.
Recently, the impact of endometriosis on patients’ lives has been
recognised. The National Action Plan for Endometriosis, which was
launched in Australia in 2018[11], formally
acknowledged its burden as a chronic condition. One of the first
priorities is to increase awareness and education in Australia, for both
patients and health professionals, in an effort to reduce delays to
diagnosis. In an era where unauthorised information is widely available
online[12], there is a lack of data demonstrating
which sources are regularly utilised by patients to obtain such
information and the authenticity of the different sources. In addition,
there is minimal understanding regarding what knowledge patients have in
relation to the various treatment options available, and a lack of
insight into how patients perceive these treatments.
The objective of this pilot study was threefold: to ascertain what
patients understand about endometriosis, where they obtain their
information from and to gain an understanding of perceptions of
treatment options for endometriosis.