Demographic and clinical characteristics of participants are provided in Table 1.
Response rate was not calculated in the current study as it was not technically available through the used polling online system. Most items were compulsory in this online survey and submission was possible only by completing all pages, so there were no missing data in this survey.
Of the 903 participants 71.10 % (n=642 ) of participants were born in Australia and 28.90% (n=261) were born outside Australia, in countries including the U.S.A. (82), U.K. (29), New Zealand(34), England(21), Ireland(17), Canada(14), Scotland(7), Republic of South Africa(7), Scotland)7), Germany(5), Netherlands(3), Korea(3), Italy(3), Japan(2), Poland(2), Malaysia(2), Indonesia(2), Wales(1), Slovakia(1), Tanzania(1),Greece(1), Mexico(1), Nigeria(1), Chile(1), Slovenia(1), Trinidad(1), Singapore(1), Bulgaria(1), Barbados(1), Malaya(1), Namibia(1), Honduras(1), Philippines(1), Macedonia(1), South Switzerland(1), Poland(1), Sweden(1), Norway(1).
Participants were aged 16-68 years with self-reported confirmed diagnosis of endometriosis by surgery (86.5%) and the rest had a provisional diagnosis mostly based on ultrasound or symptoms. Mean age at onset of symptoms was 16.61± 5.7 years, at first visit to doctor was 19.98± 7.2 years, and at diagnosis was 24.81±6.9 years, making a delay in diagnosis of 8.1±6.2 years from the onset of symptoms.
The Australian and non-Australian participants were within the age ranges of 16-66 (33.46±8.4) and 18-68 (32.38±9.4) years respectively and there was no statistically significant difference between the two groups (P=0.35). The predominant language in both groups was English (P<0.001). In addition, 39.1% and 43.3% of Australian and non-Australian patients were married, respectively. Approximately 30% and 34.5% of Australian and non-Australian participants had tertiary education, respectively. Additionally, 90.5% and 81.6% of Australian and non-Australian women were employed, respectively. There was no significant difference between the two groups in terms of full-time employment, education level, and part-time and full-time occupation, retirement, and home duties (P>0.05) (Table 1).
Mean ages of Australian and non-Australian women at the onset of the first symptoms were 16.5±5.5 (within the age range of 9-46) and 16.9±6.3 (within the age range of 8-42), respectively. There was no statistically significant difference between the two groups in this regard (P=0.93). Besides, the mean age of Australian and non-Australian women at the time of the diagnosis of symptoms were 24.4±6.9 (within the age range of 12-46) with a delay of 7.9±6.3 years and 25.6±7.1 (within the age range of 14-48) with a delay of 8.6±6, respectively. Although the Australian women were diagnosed at a marginally younger age, the results did not indicate a significant difference between the two groups (P=0.11) (Figure 1).
Participants with delayed fertility was 37.1%, never pregnant 54.8 %, miscarriage or stillbirth 13.4% , hysterectomy because of endometriosis 9.6 %.
Australians (54.4%) and non-Australian participants (55.9%) had never been pregnant, respectively. Furthermore, 37.5% and 36.0% of Australian and non-Australian women with endometriosis were infertile, respectively.
About 13% of people in both groups had a history of miscarriage and stillbirth and more than 30% of them had a history of infertility. Prevalence of hysterectomy due to endometriosis was not significantly different between the two groups (P>0.05) (Table 1).
Self-reported diagnosis of endometriosis was confirmed by surgery in 86.5% of participants including 87.9% of Australian and 83.1% of non-Australian; in which did not indicate a significant difference between the two groups (P=0.06). Australians (48.6%) and non-Australians (64.2%) were referred to the emergency department at least once due to endometriosis symptoms and here was a statistically significant difference between the two groups in this regard (P<0.001).
Endometriosis-related symptoms that Australian participants experienced in their lifetime were period pain 98.6%(n=633), fatigue 93.5%(n=600), bloating 89.7%(n=576), ovulation pain 88.3%(n=567), heavy bleeding 82.6%(n=530), pelvic pain 81.6%(n=553), pain during/before/after sexual activity 81.6%(n=524), Heavy bleeding 82.6%, irregular bleeding 64.6% (n=415), delayed fertility 38.2% (n=245), and other 22.3% (n=143). For the Non- Australian participants symptoms were period pain 96.9%(n=253), fatigue 95.4%(n=249), bloating 93.1%(n=243), pelvic pain 90%(n=235), ovulation pain 89.7%(n=234), pain during/before/after sexual activity 85.4% (n=223), heavy bleeding 81.2% (n=212), irregular bleeding 66.3% (n=173), delayed fertility 37.5% (n=98), and other 25.45% (n=56). The prevalence of symptoms had no significant difference between the two groups (P>0.05) (Figure 2).
Lifetime treatments used for endometriosis by Australian participants included: Pain killers 96.4% (n=619), surgical treatments 84.9% (n=545), hormonal medication 84.1% (n=540), complementary treatments 48.8% (n=313), hormonal IUD 39.4% (n=253), psychologist 27.1% (n=174), nutritionist 22.3% (n=143), physiotherapist 18.2% (n=117), sexual therapist 2.8% (n=18) and other 10.3% (n=66). For the Non- Australian participants, lifetime treatments used were Pain killers 95% (n=248), hormonal medication 86.2% (n=225), surgical treatments 83.5% (n=218), complementary treatments 37.9% (n=99), hormonal IUD 33% (n=86), psychologist 21.5% (n=56), nutritionist 20.3% (n=53), physiotherapist 11.1% (n=29), sexual therapist 1.9% (n=5) and other 14.9% (n=39).
There was no difference between the two groups in terms of the consumption of analgesics, hormone medications, and surgical treatments (P>0.05). However, the use of complementary treatments (P=0.003) and referral to a physiotherapist (P=0.008) was significantly higher in Australian women (Figure 3).