Campaigners and sufferers of the condition known as Endometriosis gathered at a press conference today in Dublin to convey the debilitating nature of the illness and to outline their view that there needs to be more awareness of the condition.
Endometriosis affects 1 in 10 women, yet many people are completely unaware of this debilitating condition. Amongst its symptoms, crippling pain and fertility related difficulties cause untold distress for many women. It is one of the most regularly seen gynaecological diseases, yet it is poorly understood and not commonly talked about.
Gino Kenny TD said: “It is important that as an elected representative to raise awareness around those who are living with endometriosis in Ireland. Hopefully today shines a light on those who have been suffering in silence for too long.
Kathleen King has supported and advocated for Irish women living with endometriosis for over 20 years. She is the Chairperson of the Endometriosis Association of Ireland and has recently completed research into online information and its impact on those living with endometriosis. She has lived with symptoms of endometriosis and adenomyosis for over 30 years and represents Irish women through her voluntary work nationally and internationally with the World Endometriosis Organisations and international bodies such as ESHRE.
She said: “In my 30 years living with endometriosis, I have seen little or no change in Ireland. I see women entering debt due to travel for surgery and fertility treatment. Ireland, with the support of our government, can become a leader in reducing the diagnostic delay by introducing education for both the public and medical community and by working with the EAI to develop a multidisciplinary centre of excellence for endometriosis within Ireland, taking lead from our European colleagues.”
Aimee Brown, who sufferers from the condition said: “The reason I’m here is because Endometriosis has completely destroyed my life in every possible aspect. I want to make change now for the millions of young girls inevitability facing this cruel condition in years to come.”
Sarah Moloney said: “I am trying desperately to live an active healthy life despite endometriosis and the after effects of surgery affecting every facet of my life.
“I would like my story to educate women on what the treatment options are, to help them avoid the pitfalls of the treatment that is currently available and to let them know that there is hope of pulling back at least some of the life they had before their symptoms had such a profound impact on their lives.”
Jeanne Sutton is a recent graduate of DCU’s Science Communication MSc and was diagnosed with endometriosis in 2011.
She said: “We’re seeing governments around the world wake up to endometriosis thanks to patient activism. Ireland has an opportunity to help the estimated 1 in 10 women with endometriosis receive a less stressful diagnostic pathway, but in the near 10 years since I was diagnosed nothing has changed. Women are still in the dark about this condition and it is not good enough that all the work is left up to an organisation like the Endometriosis Association of Ireland – which does not receive government funding.”