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].