PCOS Diagnosis in the UK Question Title * 1. Have you been diagnosed with PCOS? Yes No In progress / Suspected Question Title * 2. Where did you live when you were diagnosed with PCOS? Ireland: Connaught Ireland: Leinster Ireland: Munster Ireland: Ulster Northern Ireland Scotland: Central Lowlands Scotland: Highlands Scotland: Southern Uplands Wales: North Wales: South Wales: East Wales: West England: North East England: North West England: East Midlands England: West Midlands England: East England: South East England: Greater London England: South West England: Yorkshire and The Humber UK other e.g. Isle of Man Outside of the UK (please specify) Question Title * 3. Which race/ethnicity best describes you? Asian Black / Afri-Caribbean Hispanic Middle Eastern Mixed: Asian and White Mixed: Black and Asian Mixed: Black and White Mixed: Other White / Caucasian Other (please specify) Question Title * 4. At what age were you diagnosed? Under 18 18-24 25-34 35-44 45-54 55-64 65+ Question Title * 5. How long did it take to receive a diagnosis from when you first went to the Dr? Up to 1 year 1-2 years 2-3 years 4-5 years 5-6 years 7-8 years 8-9 years 10-11 years 11-12 years 12-13 years 13-14 years 14-15 years 15 years + Question Title * 6. Which healthcare professionals were involved in your diagnosis? (Select all that apply) GP Gynaecologist Endocrinologist Dermatologist Nurse Practitioner Ultrasound technician Other (please specify) Question Title * 7. What tests were involved in your diagnosis? (select all that apply) Ultrasound (to check appearance of ovaries) Blood test to check hormone levels (e.g. testosterone, LH, FSH, prolactin, thyroid) Blood test to check AMH (Anti-Müllerian Hormone) Blood test to check HbA1c (average blood sugar levels) Fasting glucose or insulin test (to check for insulin resistance) Based on symptoms only (e.g. irregular periods, acne, excess hair) I’m not sure / I don’t remember Other (please specify) Question Title * 8. What challenges did you face in getting diagnosed? (Select all that apply) Difficulty in being taken seriously Told to go away and lose weight Told to come back when I want to have a baby Told I'm lucky to not have periods regularly Lack of condition awareness among healthcare professionals Weight stigma and bias Long wait times for tests/appointments Lack of cultural awareness among healthcare professionals Other (please specify) None of the above Question Title * 9. What were the biggest barriers to getting a timely diagnosis? Question Title * 10. How would you rate your PCOS diagnosis experience? Very poor Excellent Clear i We adjusted the number you entered based on the slider’s scale. Question Title * 11. How well did healthcare professionals communicate with you about your PCOS diagnosis? Very poor Excellent Clear i We adjusted the number you entered based on the slider’s scale. Question Title * 12. After your PCOS diagnosis, were you given any of the following? (Select all that apply) An explanation of what PCOS is Advice on managing symptoms (e.g. acne, excess hair, weight changes, mood) Information about treatment options (e.g. hormonal contraception, metformin, fertility treatments) Referral to a specialist (e.g. endocrinologist, gynaecologist, dermatologist, dietitian) Printed or digital resources to take away Follow-up appointment or monitoring plan Recommendation to follow Verity Recommendation to follow other patient organisation None / nothing I don't remember Other (please specify) Question Title * 13. Did you feel supported and informed after your diagnosis? I felt supported and well-informed I felt somewhat supported, but had unanswered questions I felt dismissed or not taken seriously I felt gaslit or not believed I felt overwhelmed or confused I felt like I was to blame for my symptoms I felt hopeful and relieved to have an explanation I don’t remember Anything to add? Question Title * 14. Many with PCOS report hearing comments like the ones below during diagnosis. Even if the wording was different, did you hear anything with a similar message? (leave blank if this doesn't relate to your experience) Go away and lose weight Come back when you want to have children Why are you complaining about having periods There's not much we can do You may struggle to have kids It's just a cosmetic condition, nothing to worry about Just go on the pill You're too young to worry about it Were you told anything else? Question Title * 15. Do you have anything else you would like to share about your diagnosis experience? Done
