Table 6 Recommendations and advice
Themes: Recommendations for health care improvement for women with PCOS [N = 137]a | N [%] |
more resources, more support | 49 [35.8] |
◦ “Mayby give more resources instead of leaving the patient to figure it out saying just lose the weight doesn’t help.” ◦ “More doctors at women's clinics that can offer resources and help.” | |
better information, more options | 44 [32.1] |
◦ “Provide more information regarding PCOS Additional screening / testing for future complications of PCOS (diabetes, heart problems, pelvic ultrasound, etc.).” ◦ “Give patients the info right there and then. Follow up.” | |
educate/train clinicians | 35 [25.5] |
◦ “More doctors need to know about PCOS! They need to know what blood work needs to be done, from what I've seen, they don't.” ◦ “Maybe more training and compassion from primary care physicians so I don't want to avoid going.” | |
prompt referral to specialists | 26 [19.0] |
◦ “I think that there should be faster referrals to OB's or GYN'S for any reproductive issue.” ◦ “Referrals to a natural path or dietitian would be helpful. We are left to navigate this alone.” | |
more compassion and understanding | 23 [16.8] |
◦ “Often times I've felt neglected and alone with my condition, doctors didn't take me seriously or allow me to believe that not having my period isn't normal.” ◦ “Treat women as more than child-bearers. PCOS affects more than just ovaries. It also affects our mental health.” | |
more pain management | 3 [2.2] |
◦ “Listen better to patients who seek help for severe pain.” ◦ “Take our pain seriously. Help us find solutions and not band aid.” | |
no comments | 3 [2.2] |
Themes: Advice for young women with PCOS in Alberta [N = 136]a | |
be your own advocate, do your own research | 71 [52.2] |
◦ “Advocate for yourself, don't be afraid to ask questions and don't let doctors invalid or minimize your symptoms.” ◦ “Do you research before going to an appointment. Stick up for what you want and the path you want to go.” | |
ask questions, get information, more options | 38 [27.9] |
◦ “Go see a gynaecologist right away and ask questions and what can be done for it.” ◦ “Ask questions! Seek help for fertility that goes to the root of the issue.” | |
see multiple physicians or specialists, get 2nd opinion | 32 [23.5] |
◦ “Find a physician / dietician / therapist, etc. that specializes with PCOS patients.” ◦ “Always do your own research and get more than one opinion on things if you still feel unsure” | |
ask for referral | 20 [14.7] |
◦ “If you don't feel heard ask for a new referral, try a naturopath osteopath or even acupuncture it won't damage and it might help.” ◦ “Ask her family doctor to refer her to any specialist she may needs, especially for mental health as it can be an overwhelming diagnosis.” | |
find someone (clinician/support group) who listens | 17 [12.5] |
◦ “I would tell her to reach out to local groups of women that have PCOS I would ask her to find a proper physician that will recognize PCOS is a problem and knows a little bit about it and is open to working with them they may not know everything about it but they're willing to send referrals and find different ways to help them find success.” ◦ “Find a friend or hire a coach, nutritionist or dietician who has been through it before and will help you navigate. Someone who can tell you where to start and show you how to design a lifestyle you can keep up for life that doesn't deprive you or cause/worsen eating disorders.” | |
maintain a healthy lifestyle, listen to your body | 13 [9.6] |
◦ “Watch what you eat and stay physically healthy.” ◦ “Concentrate on staying healthy, without shame.” | |
don't know where to get help, no advice | 6 [4.4] |