“When you’ve been through endometriosis journeys as we have, you do kind of go – this is so unfair. The system is loaded against women,” says Bébhinn Nic Liam, board member of the Endometriosis Association of Ireland.
Endometriosis is one of the most common gynaecological diseases affecting up to one in 10 women, yet it is poorly understood, and a diagnosis takes an average of seven years.
"There's a real injustice being done to women, so you put your fatigue and your own pain to one side and you go – right, this can't happen," Nic Liam tells Kathy Sheridan on the latest episode of the Women's Podcast.
The association is a voluntary organisation providing information and support for women with endometriosis, run mostly by women who have the condition themselves.
Also on the board is 32-year-old Julie Ronaghan, who says she knew from her first period that she was not experiencing the same symptoms as her friends each month.
While they complained of cramps, she soon realised that the severe pain in her lower back and down into her thighs was not usual among her peers.
Her GP put her on the oral contraceptive pill and that helped to suppress the symptoms for a few years, but it was not until her mid-20s when she and her husband were having difficulty trying for a baby – and after many misdiagnoses – that Ronaghan was finally told that she had endometriosis.
“It started a road that has been quite difficult,” she says.
“It can be a struggle to find the positives. One was that at least I had the diagnosis and there have been other things, but it has been a total rollercoaster since then. It changes you as a person.”
On the podcast, Ronaghan and Nic Liam speak about their journeys with endometriosis to date, their hopes for the future and why they are passionate about sharing accurate information about it.
Also, consultant gynaecologist Dr Aoife O’Neill, who works with women who have endometriosis, speaks about how the disease is dealt with in Ireland and the work that needs to be done to improve treatment in this country.
You can find information from the Endometriosis Association of Ireland here: www.endometriosis.ie
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