HEART Women & Girls wants to hear about your experiences with PCOS!

Polycystic ovary syndrome (PCOS) is a chronic hormonal disorder that affects approximately 1 in 10 women of reproductive age. PCOS is a multifaceted condition characterized by symptoms that result from a hormonal imbalance and may have metabolic, reproductive and psychological manifestations such as: irregular or missed periods (oligomenorrhoea), increased facial and body hair (hirsutism), ovarian cysts, acne, depression, obesity, among other symptoms. PCOS is also a common and treatable cause of infertility. There is currently no cure for PCOS, but the symptoms can be managed with various forms of treatment.

Despite the high frequency of this disorder, it is rarely discussed in the Muslim community. We at HEART Women & Girls are looking to raise awareness and address specific concerns about this condition for our community.

If you are a female-bodied Muslim woman with PCOS, please take this survey so that we can better understand how this disorder affects Muslimahs in the community, and learn about the personal experiences of those with this condition.

All responses are confidential and anonymous. Data and findings with no personal identifying information may be publicly shared for research purposes.

If you’re looking for more information on what we do at HEART, check us out at: http://www.heartwomenandgirls.org/.
To learn more about PCOS, some websites with more information are: http://www.pcosaa.org/ & https://www.nichd.nih.gov/health/topics/pcos/Pages/default.aspx

If you have any questions/comments, please contact Wajihah at wajihahbhatti@gmail.com

We thank you for your time!

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* 1. Do you have PCOS (Polycystic Ovarian Syndrome)?

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* 2. Do you identify as female bodied and Muslim?

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* 3. What is your current age?:

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* 4. How do you ethnically identify? (PCOS symptoms can manifest differently among ethnicity due to genetics and sociocultural differences) (Please check all that apply):

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* 5. At what age did you first discover symptoms of PCOS?

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* 6. Do you have any immediate family members with PCOS?

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* 7. If so, who?

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* 8. What were the symptoms that led you to seek treatment? (Check all that apply):

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* 9. Were there any barriers in you getting diagnosed or seeking treatment? (Check all that apply):

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* 10. Did you know anything about PCOS before you were diagnosed?

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* 11. If so, what did you know?

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* 12. At what age did you seek medical help for your PCOS?

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* 13. How was your experience in discussing your PCOS with your medical provider?

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* 14. Were you able to discuss it with someone other than you medical provider? If so, who? (Check all that apply):

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* 15. What was the criteria your medical provider used to diagnose you (check all that apply):

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* 16. How did you feel when you were first diagnosed with PCOS? (Did you feel supported/unsupported, did you feel adequately/inadequately informed, etc.)

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* 17. What kind of treatment are you currently undergoing, if any? (check all that apply)

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* 18. Any co-occurring additional disease or disorders?

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* 19. If yes, please indicate which?

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* 20. If you’ve attempted to conceive a child while having PCOS, were you successful? (Skip if not applicable):

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* 21. Has PCOS affected your fertility?

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* 22. If you have a significant other/partner, has having PCOS affected your relationship? (Skip if not applicable):

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* 23. If yes, can you please elaborate?

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* 24. Has having PCOS affected your self-esteem?

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* 25. Have you ever been shamed for any of your PCOS symptoms?

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* 26. If you care to elaborate, please do so here:

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* 27. How has PCOS affected your quality of life?

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* 28. Do you feel that PCOS is adequately addressed in the Muslim community? If not, what are some changes you’d like to see?

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* 29. Is there any other information about PCOS that you don't know/wish you had access to?

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* 30. Do you have any concerns/fears about having PCOS?

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* 31. Is there anything else you’d like to share with us?

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