“Know Your Body Know the Symptoms” say ovarian cancer campaigners

Raising awareness of ovarian cancer

Grabbing ten minutes with the women behind Ireland’s only two ovarian cancer charities for gynaecology awareness month is by no means an easy task. These women are super busy, but more than willing to talk. 

Dearbhla Bayle, works as an auditor and volunteers her time as chairperson of Supporting Ovarian Cancer Knowledge, or SOCK. A few years ago, her friend Jane Keating was diagnosed with ovarian cancer at just 28. “She wasn’t a high risk case,” Dearbhla tells me, and she’s right. Around 315 women are diagnosed with ovarian cancer in Ireland each year – most of whom are over 50 – but the disease can affect women of any age.

Jane set up SOCK as a way to promote awareness as she quickly realised there was limited information available on ovarian cancer, and the charity has grown ever since. “Jane didn’t ask us, she told us: I need you to help me with this” recalls Dearbhla. “SOCK started because we wanted all the funds we raised to go directly to ovarian cancer and some other charities couldn’t guarantee that for us.” Jane sadly passed almost three years ago, but the charity continues to grow from strength to strength.

Women just don’t know

SOCK is focused on increasing awareness of the symptoms of ovarian cancer as abdominal pain, bloating and feeling full quickly are all too often confused with illnesses like irritable bowel syndrome. The charity decided to produce information leaflets for doctor’s surgeries throughout Ireland – 200,000 of which have “flown off the shelves” in Dearbhla’s words. The advice contained encourages women to monitor what feels normal and “Know your Body, Know the Symptoms” to catch cancer in its earliest stages. Dearbhla recalls Jane’s frustration as she sat in a doctor’s surgery, flicking through information leaflets for different diseases after she had been misdiagnosed. “If there was just more information out there, she may have spotted the symptoms herself” she says. “Women just don’t know.”

Sharon O’Toole agrees – she’s a Mother who volunteers her time on the medical panel of OvaCare and works full-time as a research scientist at Trinity College Dublin, specialising in gynaecological and ovarian cancer. “OvaCare are an advocacy and support group” she tells me. “We organise coffee mornings, information days and talks from clinicians and psychologists for patients. We also have an online community and a blog which is another support mechanism.”

There is a common misconception that smear tests can detect all types of gynaecological cancer when actually they are just for cervical cancer

Although Sharon understands the medical discourse behind cancer, she’s also keen to facilitate clear discussion amongst women when it comes to their bodies, and believes women shouldn’t hesitate in seeing their GP if they suspect something is wrong. “It’s important for post-menopausal women to know that bloating, abdominal pain, and weight change may not just be down to the middle aged spread” she says. Sharon has also educated young women about the confusion surrounding smear tests. “There is a common misconception that smear tests can detect all types of gynaecological cancer when actually they are just for cervical cancer,” she says.

Both Sharon and Jane are inspired by Una Crudden, the Belfast woman who, despite being terminally ill with cancer, has fought tirelessly to have an ovarian cancer awareness campaign launched in Northern Ireland recently. “We need to get all women talking about ovarian cancer in the same way” says Dearbhla. The two women are keen to embrace some of Una’s methods and combine their efforts with the Emer Casey Foundation (a Cork based charity which raises funds specifically for research into uterine and ovarian cancer) to ensure that more women will be talking about ovarian cancer in this country– and sooner.

Breast cancer used to be taboo but now the message for women to check themselves is very in your face” Sharon explains. We need a similar push with ovarian cancer

Today SOCK, OvaCare and the Emery Casey foundation are a combined force to be reckoned with. Last year all three worked together for the first ever World Ovarian Cancer day. Today, members of SOCK (based in Dublin) and OvaCare (also based in Cork) now meet regularly to complete their joint project – an online information portal on ovarian cancer – after receiving a grant from ENGAGe, the European Network of Gynaecological Cancer Advocacy Groups. “There aren’t many great online resources out there so we’re putting the final touches to our site at the moment” Dearbhla tells me.

Both Sharon and Dearbhla are adamant that a national campaign on gynaecological and in particular ovarian cancers is needed in Ireland. “Breast cancer used to be taboo but now the message for women to check themselves is very in your face” Sharon explains. “We need a similar push with ovarian cancer to get the word out there on a national level.” Hopefully it’s just a matter of time.

Lloyds Online Doctor are promoting gynaecological awareness all this month. For more information on female and sexual health see our blog

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