It can take two years before most women with polycystic ovary syndrome (PCOS) are finally given a diagnosis, and by then they’ve seen up to three health professionals. But this is only the beginning of their health journey. Now comes the tricky work of managing a complicated condition and working with the doctor to improve symptoms and quality of life.
Overwhelmed? There's no need to be. Here we’ll guide you on the strategies you might like to use to build your knowledge, confidence and communications with your doctor.
PCOS symptoms can come with judgement from others. Whether it’s acne, excess hair or a higher weight, the stigma linked to these symptoms can be intimidating for women, says Dr Anju Joham, an endocrinologist and Senior Research Fellow at the Monash Centre for Health Research and Implementation.
“Women with PCOS often don’t want to be labelled.
“PCOS can look very different from person to person. It can be mild or severe. But it’s important to remember that by seeking help, you can improve symptoms and stop them from deteriorating [getting worse].”
When it comes to PCOS, no two women have the same experience. And complicating things even more is the fact that the condition can change across the life stages – from adolescence to menopause.
The symptoms are wide-ranging: irregular or no periods, excess hair growth on the face or body, loss of hair on the scalp, some women have a higher weight that can seem impossible to shift, delays in getting pregnant, and feeling sad or anxious for long periods of time.
Before your appointment, suggests Dr Joham, set some time aside to think about the symptoms that bother you most so you can talk to the doctor about them. “Make a list of the top three things for you,” she says.
“You might want to look at the list of questions that we [at Monash] have drawn up. They act as prompts for the information you might want from your doctor.”
Visit askpcos.org/ask/qpl (You will have to sign up to access it).
Whether it’s acne, excess hair or a higher weight, the stigma linked to these symptoms can be intimidating for women."
Dr Anju Joham, endocrinologist and Senior Research Fellow
One of the frustrations faced by women with PCOS is the time limit on their consultations with their doctors.
“It’s always a good idea to book a long consultation because in discussing treatments for PCOS, which has such a broad range of symptoms, it’s not possible to address them in 10 minutes,” says Dr Joham.
She explains that if the patient or the doctor feels rushed, none of these things will be discussed well. To counter that, it’s important to book a longer consultation.
Today, thankfully, there’s a greater awareness of the impact of PCOS symptoms on a woman’s quality of life. “I think most doctors are very good at understanding those impacts,” says Dr Joham.
She says that 50% of women with PCOS suffer with anxiety or depression. “It’s very important if a woman is not feeling the best in terms of her mental health to go through her symptoms with her GP.
“You must tell the health professional what’s going on so they can help you.”
Check in on your mental health by completing Beyond Blue’s Anxiety and depression test. It can help you understand what kind of support you might need.
In this video, psychologist Dr Leah Brennan talks about common experiences for women with PCOS, including anxiety, depression and poor body image.
For some women, the most bothersome symptom might be weight gain. Women with PCOS often feel judged for living in a bigger body and, despite trying a range of diets and exercising regularly, they’re unable to shift the weight.
Dr Joham suggests thinking about what you want to say before seeing your doctor.
“You can, for example, say, ‘my weight used to be X and now it is Y, and this is what I’m doing to help my weight’. If you don’t know your weight, you could instead talk about your clothing size. It’s important to give the doctor something concrete to work with,” she says.
Irregular periods can be the trigger for women to seek professional help, especially if they want to become pregnant.
Dr Joham explains that age determines when women with PCOS are advised to seek help for fertility issues. “If you are over the age of 35 and have been trying for a baby without success for six months, then you need to speak to your doctor.
“Seek help after 12 months of trying without success if you are under the age of 35.”
Setting up good health care routines with your doctor is a key part of managing many chronic conditions such as PCOS. Dr Joham says the important aspects of long-term care in PCOS are a healthy lifestyle and having regular screening for PCOS-related conditions. Ask your doctor about screenings and health checks and what is right for you.
As with any chronic condition, arming yourself with knowledge can also help you in your health care journey and in your communications with your doctor.
For trusted advice, go to the PCOS webpages on the Jean Hailes website or visit AskPCOS.
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