17 Q11 Felt unable to cope with the pain? This question asks if the respondent has felt unable to cope/deal with/put up with the pain caused by their endometriosis during the last 4 weeks. Developer: ok 18 Q12 Generally felt unwell? This question asks if the respondent has generally felt unwell/ill/sick because of their endometriosis during the last 4 weeks. Developer: ie. the effect of endometriosis has not been pain alone 19 Q13 Felt frustrated because your symptoms are not getting better? This question asks if the respondent has felt frustrated during the past 4 weeks because the symptoms of their endometriosis are currently not improving/getting better. Frustration is a feeling of agitation and annoyance that comes from being unable to do something or feeling powerless over something. Developer: ok 20 Q14 Felt frustrated because you are not able to control your symptoms? This question asks if the respondent has felt frustrated during the past 4 weeks because they feel unable to do anything that will influence the symptoms of their endometriosis. Frustration is a feeling of agitation and annoyance that comes from being unable to do something or feeling powerless over something. Developer: ok 21 Q15 Felt unable to forget your symptoms? This question asks if the respondent has felt unable to forget/has felt incapable of forgetting (about) the symptoms of their endometriosis during the last 4 weeks – in other words, times when they could not stop thinking about their symptoms of endometriosis Developer: ok 22 Q16 Felt as though your symptoms are ruling your life? This question asks if the respondent has felt during the past 4 that the symptoms of their endometriosis are ruling their life. ‘Ruling your life’ refers to the way in which the symptoms affect how the respondent lives their life. The symptoms may stop them from doing certain things or cause the respondent to change how and when they do things. They may have to take the symptoms into consideration in everything they do. Developer: ok
be changed to say ‘cross’ or ‘place a cross’ (X) 42 P2 SA Q1 Had to take time off work because of the pain? This question asks if the respondent has had to take time off work because of their endometriosis during the last 4 weeks. ‘Take time off work’ refers to not working (being absent from work) for a period of time when they would normally expect to work. Developer: with or without medical certification 43 P2 SA Q2 Been unable to carry out duties at work because of the pain? This question asks if the respondent has been unable to carry out/perform their duties at work because of their endometriosis during the past 4 weeks. ‘Duties at work’ refers to anything that the respondent has to do or is responsible for as part of their job/work. Developer: ok 44 P2 SA Q3 Felt embarrassed symptoms at work? This question asks if the respondent has felt embarrassed about the symptoms of their endometriosis while at work during the past 4 weeks. ‘Embarrassed’ = self-conscious and uncomfortable. This relates to the respondent’s concerns over other people’s perceptions of them, or to a feeling of unwanted/unintentional exposure of some kind in front of other people. This is not the same as ‘ashamed’, which implies that the person has done something morally wrong. Developer: ok 45 P2 SA Q4 Felt guilty about taking time off work? This question asks if the respondent has felt guilty about taking time off work because of their endometriosis during the past 4 weeks. ‘Take time off work’ refers to not working (being absent from work) for a period of time when they would normally expect to work. Developer: guilty – feeling as if one has committed a wrongdoing
65 P2 SD Q3 Felt frustrated at the doctor(s) lack of knowledge endometriosis? This question asks if the respondent has felt frustrated about the doctor(s) lack of knowledge about endometriosis during the last 4 weeks. The respondent might feel that the doctor does not know enough about the disease and cannot offer the correct treatment/advice/support. This may make the respondent feel frustrated because their symptoms are not being treated adequately. Frustration is a feeling of agitation and annoyance that comes from being unable to do something or feeling powerless over something. 66 P2 SD Q4 Felt like you are wasting the doctor(s) time? This question asks if the respondent has felt that they are wasting the doctor(s) time during the past 4 weeks. ‘Wasting the doctor’s time’ refers to talking to a doctor about mild symptoms that the doctor may feel do not require medical attention. The respondent might have this impression if the doctor does not offer them a treatment for their endometriosis. Developer: Someone may think they are wasting a doctor’s time for a variety of reasons, not just because symptoms are mild (they may believe that their symptoms are severe but that the Dr cannot do anything to help, hence consultations are wasting the doctor’s time) 67 Section E: This is the of the fifth section (Section E) of Part 2 of the questionnaire. 68 These questions concern your feelings during the last 4 weeks about your treatment for endometriosis. This line explains that the questions in this section concern/are about the respondent’s feelings about/regarding the treatment they have received for their endometriosis during the past 4 weeks. Developer: ok 69 Treatment means any surgery or prescribed medication for your endometriosis. This line explains that ‘treatment’ refers to any surgery/operations or recommended and/or prescribed medication that the respondent has had to treat their endometriosis. ‘Prescribed medication’ is medication/medicine that has been officially approved for the respondent Developer: If a doctor recommends a course of action this may be called treatment. Consequently, if a doctor recommends a person takes ‘over- the-counter’ medicine