Polycystic Ovary Syndrome (PCOS) is a common hormonal issue that can undermine a woman’s health and sense of self, as well as her self-confidence and quality of life.
The prevalence varies according to the criteria used in diagnosis, however, the numbers are staggering… and growing. (1)
As the study Epidemiology, diagnosis, and management of polycystic ovary syndrome noted, when the European Society for Human Reproduction and Embryology/American Society for Reproductive Medicine criteria are used, the statistics could approximate 15%–20% of women of reproductive age. (2)
The symptoms can include weight gain, infertility, acne, irregular or absent periods, anovulation, excess facial and body hair, dark patches on the skin, skin tags, depression, increased anger, higher rates if bulimia…
And that’s not to touch on how many women feel unfeminine and, in effect, held back by their bodies.
Add in the loneliness and isolation women feel because it seems like they are struggling alone.
Plus, the overwhelming fact that there is much misinformation circulating about PCOS, and that most people don’t have a comprehensive idea of what the syndrome entails…
In fact, public awareness is so low that many doctors and other health professionals don’t know much, if anything, about this super common syndrome.
There is also little awareness about how this condition, not to mention the myths and stereotypes surrounding it, can affect women’s lifestyles and mental health.
To gain a better understanding of this syndrome from the women that experience it firsthand, we asked women with PCOS what they wish people knew about this condition.
What do you wish people knew about PCOS?
1. “It changes your life. Hair loss, weight gain, inflammation and its effects on your body. I’ve experienced joint pain, upset stomach and other gastric issues. Your cycles are rare or non-existent. I’ve gone from not having one to having one, but have had major PMS symptoms monthly, including night sweats and hot flashes, since I was 35…
Memory loss or just feeling foggy. Irritability for no apparent reason. Insulin resistance which makes losing weight difficult.
Infertility is the worst for me. It took me thirteen years to conceive.
I’ve developed food allergies and intolerances in my 40’s. Doctors don’t know what to do to help you. They offer you the pill, Metformin, and maybe something to help with the excess hair on your face…
There is no quick fix for PCOS. It’s hard to explain to people and it takes so long that I feel like people lose interest and don’t really get an understanding.” – Crystal A.
2. “That even though you can’t see anything, it is affecting me physically and mentally every day–some days more than others.” – Rebecca
3. “1. That I know I’m fat, you don’t need to tell me. 2. I diet and diet and the weight doesn’t go anywhere. 3. That I crave food ALL THE TIME, even when I’m not hungry. 4. It takes everything in me not to eat us out of house and home, so if I slip and have an ice cream I don’t need you giving me shit.” – Hayley
4. “How exhausted I feel after being social. That the anxiety is real, and that it can’t be talked away in a psychological session! That depression can hit you whenever, wherever, with no warning or triggers. How long it lasts and how bad it is varies, and it isn’t always the same.”
5. “That it doesn’t display the same in every woman.” – Caroline
6. “That my weight is a symptom and not the cause. I’m not lazy. PCOS adds extra obstacles for me to be ‘normal.’ For GPs to realise that I just can’t lose weight as easily as everyone else and that a mainstream diet won’t work. For GPs to actually understand what PCOS is!!!” – A.
7. “That there is so much information out in the world about the condition, and yet, most doctors still have no idea how to handle the condition. We often walk through this journey blind. We start a particular treatment plan, and then six months later it is decided to be detrimental to us and we have to start from square one all over again.” – Jessica
8. “That it existed. Even a lot of GPs I have spoken to haven’t heard of it, or they’ve heard of it but don’t know anything about it.” – Sherree
9. “That everyone’s suggestions to help me improve my skin won’t work.” – J. Po
10. “The relation of PCOS to other things like inflammation sicknesses… it’s not just the hormones and the fertility problems.” – Sherry K.
11. “That we know we have moustaches, beards, and body hair… There is no need to point it out to us. We struggle/deal with/cry over it every day.” – Kristy
12. “The pain we live through each and every day… the struggle to digest food and the constant vomiting.” – Amy
13. “That it’s a hard task to lose weight, and the shame you have about having dark spots on your elbows and knees. The worst part is losing your hair — being bald is so embarrassing.” – Monica
14. “I wish people knew that it is metabolic. Also, the cysts… that not all people with PCOS have cysts… That it is so different for each person.” – Sarah
15. “That it’s embarrassing, painful and sometimes debilitating. It affects every aspect of your life.” – Nicole
16. “How hard it is to lose weight; the facial hair problems; how hard it is to get pregnant; the mood swings and the mental health problems that come with PCOS.” – Bec
17. “That the excess hair can’t always be controlled and shouldn’t be made fun of. There are many, many, many symptoms of PCOS and not everyone faces the same symptoms.” – Rachel
18. “That infertility and PCOS as a problem with our periods is the least of concerns for many of us.” – Swati
19. “That it’s hard for us to lose weight (especially without medication) so we’re not dieting because ‘we want to.’” – Tess
20. “Some symptoms are debilitating and embarrassing.” – Anonymous
21. “How it makes you feel like less of a woman… we don’t choose to have these issues.”
22. “What it is. That it exists.” – Suzan
23. “That the pain is not just at ovulation… that it can make you lethargic and ill for no apparent reason.” – Dannii
24. “That we have to work three times harder to get no weight loss. I am so sick of being seen as lazy. I have a great diet and exercise and still have not lost weight. That this is a cruel, cruel syndrome. Being fat and hairy is horrible.” – Alanna
25. “How much it screws with weight and weight gain.” – Anonymous
26. “That it is a disease and not just a minor hormonal problem. That… it bothers women who have it on a daily basis. It should be taken more seriously.” – Esmée
If you have PCOS, it’s important you take care of yourself. Practice self-love and kindness. Reach out for help and support.
If you don’t have PCOS, it’s even more important that you expand your understanding, practice empathy and realise that this is a serious, life-changing – and potentially life claiming – illness. Women need your support.