Table 4 Open comments on information and resources provided by respondents

insufficient information

72 [59.5]

 ◦ “There really wasn't a lot given to me except your typical PCOS lose weight and it frustrated me so I went and researched myself and have restored my menstrual cycle naturally”

 ◦ “Basically, wasn't given anything. I wasn't actively trying to conceive yet so all my other symptoms and concerns were dismissed.”

lack of expert knowledge

20 [16.5]

 ◦ “Only there is a weird idea about how its just a women thing. Most of the doctor's I have seen would not deal with it due to it being a woman related problem.”

 ◦ “I wonder how well-educated male doctors are about female fertility and how these issues affect more than just our ability to reproduce.”

no follow-up or referral

13 [10.7]

 ◦ “He refuses to listen to my request for a referral.”

 ◦ “Doctors should give information or refer to a PCOS specialist.”

lack of treatment options

12 [9.9]

 ◦ “Just nutrition. No other evaluations were completed by the gyno except sending me to a nutritionist and advising me to lose weight”

 ◦ “Much of the focus of treatment was in the future when trying to have kids only, not lifestyle management for preventative health.”

lack of adequate health care

11 [9.1]

 ◦ “It was very little and felt like a death sentence in terms of getting diabetes, having to be on the pill for life and would struggle with fertility and would need fertility supports to get pregnant. It was discouraging that the only options I was given was to lose weight and take prescribed medication. No one tried to treat the root problem”

 ◦ “The Doctor just told me that they could drain the cysts but they would keep coming back.”

insufficient resources

10 [8.3]

 ◦ “What resources? Or information? I was given nothing. And this was from a fertility specialist who knew I was trying to get pregnant. “

 ◦ “Doctors did not know much to be able to provide information or resources.”

lack of mental health care

5 [4.1]

 ◦ “It's not just the medical condition that's a factor. There's also mental health to consider, primarily depression and anxiety. Depression, from personal experience, can hinder the want to lead a healthy life.”

 ◦ “Being young and hearing having kids would be extremely difficult without help was extremely mentally challenging. I was put on anti depressants shortly after that. I wish I had more in-depth information then, and now I wish I had access to a good dietician to help with the weight lose issues that come with PCOS.”

no complaints, received adequate care

4 [3.3]

Themes: information and resources provided by health care professionals at follow-up [N = 116]

lack of support

53 [45.7]

 ◦ “I think more physicians should be taught about reproductive issues and that each individual deals with pain and issues differently so they shouldn't be judged based on pain tolerance or to say it's "all in your head" or "it's just what women have to deal with.”

 ◦ “I had doctors who didn't believe me. I have fertility specialist that laughed me out of their office. I feel it's pretty difficult when dealing with PCOS I have managed to completely ostracize myself in some ways because of having to go through some of the hurdles without any supports.”

insufficient information

42 [36.2]

 ◦ “I did not receive enough information to understand the different options. I started taking birth control but I am not sure what would be my other options, or how I could manage the symptoms without birth control.”

 ◦ “I am craving information and feel like I have been hunting for answers for years. Still don't feel grounded in a treatment plan.”

insufficient follow-up care

39 [33.6]

 ◦ “They offer no form of treatment. They just expect you to live with it and deal with on your own.”

 ◦ “After having my first child and being monitored by an OB there was no follow up on care or living with PCOS”

lack of resources

12 [10.3]

 ◦ “I received zero resourses or information from any healthcare providers”

 ◦ “My GP never provided me any resources. The Gynecologist I saw twice, once to do a physical assessment and once to review my ultrasound results, never gave me any resources.”

lack of referral

5 [4.3]

 ◦ “There were no referrals for more information or treatment options provided”

 ◦ “I do wish I could be referred to a dietician or naturopath perhaps to see what more could be done, but currently that doesn't seem to be an option by my doctor.”

no comments

5 [4.3]