Page 40 - Diagnostic delay of endometriosis

months). Mean time since diagnosis was 3.8 years (range 0.5 – 9 years, SD 2.6 y). Two women were referred to the gynaecologist because of infertility, the other women had pelvic pain or other symptoms related to endometriosis. Twenty-one women (91.3%) reported a laparoscopy or MRI for confirming the diagnosis of endometriosis; the other two were diagnosed by gynaecologic examination including ultrasound imaging.
Analysis of the focus group interviews generated three main themes based on grouping of the most frequent codes and categories: 1) knowledge about normal menstruation and endometriosis in both the general population and medical professionals, 2) being believed and acknowledged by medical professionals, and 3) collaboration between health care providers including fast referral to a gynaecologist.
Knowledge about normal menstruation and about endometriosis
Many of the participating women reported problematic menstruation starting shortly after menarche or in adolescence. Help seeking behaviour was predominantly influenced by the interpretation of these complaints not only by the women themselves, but also by relatives and friends, in particular the mother. If participants had been told that their complaints were within a normal range, or that they were just unlucky to have pain, they started to dissimilate as well. When their mother, or significant others supported them in their feeling something was wrong, they were more likely to consult a doctor for their complaints. Some women mentioned that they suspected their mother had suffered from endometriosis as well, based on comparison of symptoms, without ever being diagnosed. These women were more frequently told that they just had to learn to live with the pain, or take pain medication.
“My mom told me it was normal and that I was just unlucky” [31y/o, delay 18 years]
A few women, who considered their complaints as normal, were directed to their general practitioner by a friend or relative who incidentally captured them during a painful period and told them it was not normal. Although many participants had compared their menstruation with their friends at young age, some also mentioned feelings of shame and perception of taboo.
“I was on a trip to Greece with a friend. I was lying on a chair like I was dying and she looked at me and said “what are you doing?” Then I told her
38 | Chapter 3