Interpretation
Endometriosis can cause significant sequelae for patients, including chronic pelvic pain and subfertility. If not recognised in a timely manner, patients can transition from experiencing cyclical dysmenorrhoea to chronic pelvic pain.
Although laparoscopic assessment of the pelvis is regarded as the ‘Gold Standard’ of care, it should not always be offered as the first line of management. Medical options are generally worth trialling in patients not desiring fertility with normal imaging. Historically, length of time to diagnosis tends to be unacceptably long and treatments may vary significantly between specialists. The National Action Plan for Endometriosis has been instigated to address this delay and streamline treatment options.
In the current era of digital technology, patients have the option of resorting to online resources for medical information. While these resources provide a more personal experience of various chronic diseases and present information that is easily consumed[16], their use can be hazardous as there is no regulation of the content of the information that patients have access to with regards to accuracy and appropriateness. Furthermore, there is a tendency for patients to report negative experiences more readily on social media.
Although many studies exist reporting on endometriosis and its treatment options, there is a paucity of data investigating patient awareness and understanding of endometriosis and available sources of information. Surprisingly, in this study, one third of patients were unable to differentiate between pain or subfertility as their primary concern. Twice as many patients had undergone surgery as opposed to medical treatment at initial presentation to the clinic. Despite universal access to the Internet and online medical forums, nearly 50% of patients had not built a clear picture of the potential causes of endometriosis. Interestingly 60% of patients had previously undergone surgical treatment, presumably by a specialist gynaecologist, yet were unaware of the aetiology of endometriosis. Prior treatment and severity of symptoms had no impact on degree of patient satisfaction with respect to knowledge regarding the condition. There were two major sources of information, namely gynaecologists and internet search engines. Patients were overall more positive that their symptoms would improve following medical treatment, and less certain that their fertility would. Patient expectations placed on surgical treatments were higher. Those patients who relied on their GP for information, rather than Facebook, had more optimistic beliefs regarding the value of medical treatment.
Sixty per cent of patients had undergone previous surgery yet, overall, 88.7% expected a significant improvement in pain, and 94.3% expected an improvement in quality of life. Thus, even those patients with recurrence of pain after previous surgery for endometriosis expected a high rate of success of repeat surgery. The results were not as high for medical treatment.