Design for who
Listen to their voices：
"My whole life is affected by my PCOS, not just my ability to carry children"
"I first started noticing that things weren't right at the age of 13 or 14. The main symptom for me was the irregular periods, but I also have hair loss, acne, pelvic pain (especially when/if I ovulate), fatigue and easy weight gain. Four years after the initial doctor’s appointment I got an “official” PCOS diagnosis. I was prescribed Metformin to help ease my symptoms. For me all it did was make me sick, dizzy and lacking in appetite. I tried slow release Metformin but that had the same effect. Currently I am not undergoing any treatment for my PCOS.
My experience with the healthcare system has been pretty bad, if I am honest. The general attitude of the doctors I have visited has been “You don't want to get pregnant, therefore we don't want to know.” Whenever I went to a gyno appointment all they wanted to discuss was fertility treatment. At the time I was 17/18 years old I wasn't interested in getting pregnant (I'm still not interested at 21). I feel it is wrong that they seem to concentrate on either the getting pregnant aspect of having PCOS or the weight gain aspect of the condition. No one seems to remember that the fatigue and the hair loss also have a profound effect on my life and self esteem. I would love for doctors to be more aware of how my whole life is affected by my PCOS not just my ability to carry children."——Abi, female, UK, 21
"The NHS regard PCOS as primarily a condition affecting fertility, and will only treat you if you're trying to conceive"
"I was recently told by my GP that 'they don't even test for or attempt to diagnose PCOS unless it's causing problems with fertility'. I don't plan on having kids but is it generally the case that the NHS regard PCOS as primarily a condition affecting fertility, and will only treat you if you're trying to conceive? I'm wondering if I should try another (perhaps younger, female …) GP in the practice as I'm suffering with quite a few symptoms that I believe to be PCOS and it's making me quite depressed, but I left the last appointment feeling quite humiliated and I don't really know what to do now."——Anonymous, female, UK
"I was told by doctors that unless I was trying for a baby there was no treatment available"
"I am infertile, very heavy periods, having to have iron infusions every other month because of them, hirsutism, weight gain (until I had weight loss surgery). I was diagnosed at 16. I was very lucky, my GP sent me for tests after taking the pill caused me to bleed for 6 months solid and he realised there was something wrong with me hormonally. I was prescribed metformin, it made me very sick. And I was told by doctors that unless I was trying for a baby there was no treatment available.
At times it has felt like PCOS has robbed me of my womanhood, adulthood and independence, but there is a life possible with PCOS. While it's not curable, it is manageable if you push your health care professionals hard enough and join a great support group."——Anonymous
Many patients without plan to have children feel disrespected by the healthcare system. Their individual subjectivity is compromised while healthcare system only pays attention on infertility.
Why not patients who are in preparation of pregnancy?
1. Different motivation:
Patients with a clear plan to conceive tend to have stronger motivation and dedication for treatment in order to have a baby. Under such strong motivation they would seek treatment more proactively, and thusly receive more help and support.
2. Different accessibility:
Information regarding symptoms and complications other than infertility is much more difficult to find filter and find from the massive information on the Internet. Patients without reproductive intention are likely to neglect risks of PCOS and therefore drop attention on management of PCOS.
