Table 1 Additional quotes

“The whole package deal”

Intrinsic, complex disorder

“There’d be at least one in three women that have it and are dealing with it on a constant basis. Whether they find that through infertility or weight loss or whatever else other things. I think the down side of it is that it’s so intrinsic with the rest of your health. You actually don’t realise it until you’ve got it. Someone says, hey have a look at this do you know that this affects lots of things. Insulin resistance being the biggest factor of it. But it’s also intertwined and you don’t realise until you’ve actually been told” - Annabelle, not TTC

Lack of control

“So I think the health benefits of it are that if you can get control of all of it then you end up with a better life I guess at the end. Because you’re not controlled by the PCOS and it’s not damaging the rest of the things that go wrong while you have it” – Annabelle, not TTC

Everything is linked

“So the weight management and the fertility would be my top things. Because I think that if I maintained a healthy weight, if I got to a healthy weight and maintained it, I think that would help with the self-confidence and stuff” - Grace, TTC

Diagnosis

Delayed diagnosis

“So after that I found it’s hard to get pregnant. That’s when the doctor told me that you know that’s the reason and I took the pill for so long and all of that. Yeah, I wish someone had told me before” - Harriet, not TTC.

“I know for me until I was diagnosed with PCOS trying to have my third child I didn’t know I had it at all. So I would have had no clue. But when I look at what it was and I’ve had irregular periods from the time I was 13 years of age and heavy periods not just normal periods and that’s what constituted the hysterectomy” - Annabelle, not TTC.

Lack of information after diagnosis

“I went to the doctor and the doctor just gave me the tablets, the contraception, the pill. I was only 16. I’ve had it for years and I’m sick of it. Then I have a lot of acne. I have a lot. And hair. I got a lot of hair. Thank god for hair lasers. So all my facial hair is gone but I wasted a lot of money on it. But I hadn’t been told. I hadn’t been told for a long time. All I had been told was take the pill” – Annabelle, not TTC

Negative experiences on online forums and social media, and the need for peer support

Negative experiences online

“I generally skip over the positive ones just because I think good luck to them and all the best but that’s not me. I’m like you, that’s not happening to me so [I don’t like it]” Keira, TTC

Need for support

“The support group. For me that would be something I would probably look forward to” – Chloe, TTC

Isolation

“I would. I don’t know anyone else that has PCOS. Sometimes I’ll talk to my girlfriends and stuff and they just don’t get it. So it [a support group] would be good…” - Grace, TTC

No cure

No cure

“I personally, I find it interesting. With me, I would definitely give it a go. Because of the fact that I have tried so many other things and they’ve not worked, so I would 100% give it a goal. Other people, I reckon - I would imagine that there is a lot of other females that have PCOS that have had similar [unclear” – Grace, TTC

Altruism

“So I guess having the incentive there to do a trial and a study, and also help the university out as well, so I guess, yeah, it’s a bit of an incentive to do it...A bit of a push, and there’s someone relying - not so much relying on me, but you get what I mean” – Georgia, not TTC

PCOS symptoms and long term sequelae

PCOS symptoms

“I get a lot of facial hair that I get really self-conscious about” - Grace, TTC

“Now everything is like, I don’t know if it’s too personal or not, but even things such as hormone levels, sexual desire. All that sort of stuff I think has a lot to do with PCOS itself because you’re not firing on all eight cylinders like you should be” - Annabelle, not TTC

“I have pretty irregular periods and pretty emotional too; like I guess just the mental health [outcomes] as well - I’m very hormonal, so probably look at that” - Georgia, not TTC

“Yeah, I think that the depression and how you feeling mentally about it they should because you said we get anxiety and things like that” - Jessica, TTC.

“Because I suffer with depression a lot and I was told that that can sometimes go hand-in-hand with having the PCOS. So, dealing with the self-esteem side of it, that would be a big thing for me” - Grace, TTC.

“I think at the moment, my top two priorities would be the healthy weight and then dealing with the fertility...So the weight management and the fertility would be my top things. Because I think that if I maintained a healthy weight, if I got to a healthy weight and maintained it, I think that would help with the self-confidence and stuff” - Grace, TTC

Chronic disease risk

“But I think the blood pressure, yeah, the heart and the anxiety is really controlling and I know, yeah, that’s my problem” – Harriet, not TTC

Psychological aspects

“Because I suffer with depression a lot and I was told that that can sometimes go hand-in-hand with having the PCOS. So dealing with the self-esteem side of it, that would be a big thing for me” - Grace, TTC