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Advocates speak to politicians in Leinster House.
Advocates speak to politicians in Leinster House.
Image: Conor McCrave

'Wombs, periods, they're taboo subjects': Patients appeal to TDs and Senators for endometriosis support

Women have been advocating for change in this area and to support the 155,000 women who suffer from it.
Dec 11th 2019, 6:00 AM 11,326 6

WOMEN SUFFERING FROM the chronic condition endometriosis have told TDs and senators in Leinster House of the debilitating effect it has had on their lives in a bid to drive change for how it is treated and diagnosed. 

A presentation, organised by People Before Profit TD Gino Kenny, saw patients and advocates relay the impact it has had on their mental and physical well-being as well as the risk to fertility for women. 

The average waiting time for patients to be diagnosed in Ireland is currently nine years, with many saying they have been repeatedly misdiagnosed with incorrect bowel and gastrointestinal conditions in the meantime. 

Some 155,000 women are believed to suffer from endometriosis in Ireland alone, and advocates say that without a dedicated centre of excellence to treat it, women will be forced to “export” the issue for treatment abroad. 

Aimee Brown, who previously spoke to TheJournal.ie, told politicians how she was forced to travel to Romania for treatment due to a lack of expertise among medical professionals in Ireland. 

Sarah Maloney also spoke of the impact it has bad on her life, missing work and “waking up on the bathroom floor to several missed calls from people” due to the pain she experienced from the disease. 

Kathleen King, chair of the Endometriosis Association of Ireland, said that medical professionals needed more education, and called on members of the Oireachtas to support reforms within the healthcare system. 

“I think that medical professionals need to up their education. I just attended the European conference on endometriosis and I was the only Irish person there,” she said adding, “it’s time we stop exporting women’s problems”.

Last month, King gave a presentation to members of the Department of Health’s Women’s Task Force to raise awareness at policy-level. 

She has also begun research in this area, and said women are more dismissive of the condition than men because women believe they are expected to “just deal with” the cramps and pain associated “women’s problems”. 

In response, Solidarity TD Ruth Coppinger said: “Whatever about the lack of female solidarity, what I would say is that wombs, periods, they’re taboo subjects in general among women and men, and it’s very rare that those words are uttered in the Dáil. 

“That has to change and the whole lack of female representation doesn’t help. So, I will do anything in terms of supporting and creating awareness.”

Senator Frances Black described hearing of the effect endometriosis has had on women’s lives during the talk as a “breath of fresh air”, adding that a close friend of hers has long suffered from the condition. 

“One of my best friends has endometriosis and I have been by her side, I have seen the pain that she’s gone through. I’ve seen the fatigue, and the lack of support that she would have got from any medical care whatsoever. 

“And it’s just really refreshing to hear you say that’s not right and in actual fact, I thought ‘oh my God, if only she could hear that’ or heard that down through the years in what she went through, that there is an organisation that do support women. 

“It actually has destroyed her life, somebody said about relationships, it actually has destroyed a good few relationships in her life.”

A representative speaking on behalf of Sinn Féin Senator Rose Conway-Walsh spoke of her family’s experiences, telling how her mother had a hysterectomy as a result of it, how she has it, and that her daughter now has it. 

“I’ve had six surgeries, my mother had a hysterectomy at 34, we seen my daughter had endometriosis when she collapsed on the Dart and we brought her to St Vincent’s Hospital,” she said. 

“It does need to be spoken about a lot more, and I have been through the same situation where I’ve missed work… so definitely more awareness around that is needed.”

Health Minister Simon Harris, who was not present during the talk, previously said treatment of the condition would be reviewed as part of the Women’s Task Force and any recommendation from that group would be considered once it furnishes a report. 

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Conor McCrave

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