Feeling let down by the medical profession, women diagnosed with life changing condition are seeking advice and help from social media support groups and medical websites.
Danielle Mortimer, founder of PCOS Aware, said a recent survey conducted by the organisation found almost 20 per cent of respondents turned to social media to help better understand Polycystic Ovary Syndrome (PCOS).
“Out of the 1,110 women who responded to the survey, over a fifth reported they had not received a lot of support or information from their doctor,” Danielle said.
“This means they had to go searching for answers. For women diagnosed 20 years ago, social media especially Facebook support groups have been a real lifeline.”
“Facebook has a number of support groups and closed groups where women can discussed the nasty symptoms of PCOS.
“Over 20 had not sought support at all.”
Danielle said PCOS affects one in 20 women.
“It’s a condition that impacts the lives of over 1 1/2 million Australian women…it causes masculine facial hair growth, flappy skin tags, floppy body and the gloomy prospect of never having children,” she said.
“It is a scourge of womanhood but no one talks about it and women with it suffer in silence and shame.”
Danielle said the survey revealed heartbreaking stories of misdiagnosis and misunderstandings.
“Reading comments like ‘I should have discussed with a professional who understood PCOS about what it was, consequences, symptoms’ or ‘I should have pushed for help’ is hard,” Danielle said.
“The medical profession does a great job but it seems, for this condition, there is still not a lot know about it.
“This results in the wrong diagnosis and many women are left adrift, not sure what is wrong with them and feeling isolated and alone.”
Danielle said PCOS Aware is working on programs and services to create awareness and resilience for those with PCOS.
“Sometimes just telling your story can be healing and that is why social media is so powerful,” she said.
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