Page 41 - Diagnostic delay of endometriosis

I felt like this every month and we started to talk about it [menstruation] and then I realised it was not normal. I was 30 years old at the time.”[M, 37 y/o, delay 14 years]
Being acknowledged by medical professionals
Almost all women with pelvic pain reported repeated consultations at the general practitioner’s office for a diversity of symptoms which could later be attributed to endometriosis. Almost all of these women felt their symptoms were normalized or not taken seriously by the general practitioner. They perceived a lack of knowledge and skills concerning endometriosis resulting in insufficient acknowledgment in their call for help. Some were submitted to non-discriminatory tests or referred to the wrong medical specialist, or given numerous prescriptions for pain medication or contraceptive pills, often without the advice to take them continuously. Some of the participants never had a gynaecologic examination by their general practitioner despite repetitive consultations for abdominal pain or problematic menstruation. Five participants experienced restraint in further testing or referral because they were too young. Others were referred to the gynaecologist only after seeing a different general practitioner or during an emergency hospitalization. The gender of the general practitioner did not seem to affect the evaluation of symptoms according to the participants.
“My general practitioner never took it seriously because I didn’t want to get pregnant yet. I was 15 or 16 years old... I got prescribed different contraceptive pills all the time. I got referred when I was 20 years old and was trying to conceive.” [H, 29 y/o, delay 10 years]
There were participants with a fast referral to a gynaecologist as well. This was more likely if the patients reported specific complaints related to the menstruation, if they had tried to conceive for more than one year, if the women suggested endometriosis themselves or if they persisted in requesting referral.
“It was left in the middle for a while by the general practitioner. At some point I demanded a referral to a gynaecologist. My general practitioner thought it was ridiculous en unnecessary. But I persisted and then he said fine let’s do it.” [M, 37 y/o, delay 14 years]
Strengths and weaknesses in the diagnostic process | 39