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.