Main findings
This pilot study has highlighted that patients with endometriosis
experience significant symptoms. The average pain score for patients was
8.5/10 for 13.6 days per month, with an impact score of 6.9. This is a
significant pain score for almost 2 weeks per month. Considering the
burden that endometriosis places on society, and the overall prevalence,
this equates to a significant number of patients who are affected by
this condition. The severity of the symptoms experienced by the
patients, and the treatment they undergo, does not have a correlation
with their level of knowledge. Almost half of patients were unsure of
the causes of endometriosis.
It would appear that patients rely heavily on Internet search engines
and gynaecologists for their information. Patients’ level of optimism
regarding treatment options was influenced by their sources of
information. Patients were more optimistic about medical treatment and
surgical treatment if information was sought from general practitioners
and gynaecologists respectively, compared to online sources. This would
indicate that imparting accurate, relevant information is more
beneficial. Patients’ expectations of medical treatment were compared
with the sources of information they utilised for self-education. We
found a statistically significant negative association between reliance
on Facebook for information and expectations of medical treatment with
regard to symptom control (Table 2). A statistically significant
positive association, however, was found between a reliance on the GP
for information and a high expectation of medical treatment for relief
of pain (Table 2). In other words, patients who relied on GPs for
information expected their symptoms and pain to improve on medical
treatment. Similarly, there was a statistically significant positive
association between surgical treatment and reliance on gynaecologists
for information with regard to symptoms and quality of life, but a
negative association if information was sought from other clinic staff
(Table 2).
Surprisingly over half of patients in this study thought that medical
treatment would improve their fertility. In reality, most medical
treatments preclude pregnancy. This would suggest that patients are not
properly informed. A body of evidence supports the positive benefits of
surgery with regard to fertility. Sixty-four per cent of patients
thought that surgery would be beneficial with regard to fertility. The
effect of surgery on fertility depends on the severity of the disease.
Oocyte quality will have a significant impact as well. Two RCT’s
compared laparoscopic excision of mild and minimal endometriosis with
diagnostic laparoscopy alone [13, 14]. Whilst one
group reported a positive effect [13], the other
group found no positive benefit.
Ninety per cent of patients expected an improvement in their pain after
surgery despite 60% of these patients having undergone previous
surgery. Although comprehensive data is lacking, in a systemic review,
the number of patients who did not experience a decrease in pain after
surgery for endometriosis was 11.8% [15].