Mary Lou McDonald (Dublin Central, Sinn Fein)

I move:

That Dáil Éireann: notes that:

— endometriosis is a serious, chronic inflammatory disease that affects the entire body, and it is characterised by severe pelvic pain, infertility, internal scarring (fibrosis), heavy and painful menstruation, and can cause irreversible damage to multiple organs;

— the disease primarily affects organs within the pelvic cavity, including the uterus, fallopian tubes, cervix, bladder, bowel and kidneys, and has also been found in the diaphragm, gallbladder and lungs;

— at least one in ten women in Ireland are affected, with recent global research suggesting that nearly one in six may have symptoms indicative of endometriosis; and

— it takes an average of nine years for patients to receive a formal diagnosis, resulting in prolonged suffering, permanent organ damage, and increased risk of infertility;

further notes that:

— a number of gynaecologists are striving to deliver better care, but are hindered by a lack of critical resources, including access to theatre time, specialist surgical tools and specialised training programmes in the identification and excision of endometriosis;

— for decades, endometriosis care in Ireland has failed thousands of women;

— the management of suspected cases in primary care settings is fundamentally inappropriate and delays essential intervention; and

— international best practice confirms that expert-led excision surgery remains the gold standard for long-term disease management and improved quality of life;

acknowledges that:

— the most recently published Health Service Executive (HSE) guidelines acknowledge that excision is a superior treatment for managing endometriosis;

— the disease's complexity and varied presentation require specialised expertise and training to diagnose and evaluate;

— excision surgery, involving the complete removal of endometrial lesions with clear margins, offers the most effective means of managing the disease, alongside multidisciplinary care; and

— while there is no known cure, expert surgical treatment allows many patients to regain their quality of life and functional health, with the support of multidisciplinary care teams;

recognises that:

— discussion of excision surgery as a superior treatment option in the most recent HSE treatment guidelines is a step forward;

— the HSE's supra-regional endometriosis clinics have less than 25 out of 50 posts filled across both centres;

— the ongoing neglect of endometriosis care in Ireland is emblematic of broader systemic failures in women's healthcare;

— women living with this disease continue to report being dismissed, ignored and traumatised by a health system, which they state, fails to recognise their suffering;

— the current model of care fails to account for the psychological, emotional and social toll of endometriosis, compounding the physical burden of the disease; and

— use of the outdated staging process in HSE guidelines is causing difficulties for patients and clinicians alike, and has recently been abandoned by specialists in the field; and

calls on the Government to:

— establish a state-of-the-art centre of excellence for endometriosis care staffed by multidisciplinary care teams, including specialists in endometriosis imaging, pelvic floor physiotherapy; dietetics, pain management, occupational therapy, endocrinology, fertility management, psychology and surgical specialties, including colorectal, urology and hepatology;

— immediately establish specialised imaging protocols to assist gynaecologists in identifying and mapping deep infiltrating endometriosis;

— provide upfront financial support for diagnosis and excision treatment in designated specialist centres abroad;

— end the current model which places diagnostic responsibility in primary care, and instead implement a fast-track referral system to specialist services, at home or abroad;

— consider replacing the outdated endometriosis staging system with, the Enzian score combined with the Oxford University Innovation Endometriosis Health Profile 30 questionnaire;

— develop and fund a dedicated training and incentive programme to upskill Irish surgeons in identifying the disease during surgery, and in the specialist excision techniques required to remove it; and

— launch a nationwide public health campaign to raise awareness of the diverse symptoms and severe impact of endometriosis, and to challenge the silence and stigma that still surround the disease.

Meetings full of tears, full of pain, distress and trauma, meeting full of hurt, sorrow and anger, full of women's grief for the lives they could and should be living if it was not for the ordeal of the cruel condition endometriosis. That was the overwhelming atmosphere in each of the nine public meetings we held across the country. These meetings were attended by thousands of women and their families who bravely shared their stories of how suffering from endometriosis, and the absence of proper treatment in Ireland, had ravaged their lives. More than 40 of these courageous women and their family members are here in the Public Gallery this evening and they are most welcome. Despite everything they have gone through, they are ready to fight for the healthcare that all women and girls of Ireland deserve and to say with one voice "enough is enough".

Endometriosis is a crisis in women's healthcare. It affects one in ten women. Endometriosis, therefore, is in our lives, in our families and in our communities. It is our mothers, our sisters, our daughters, our grandmothers, our aunts, our friends and our work colleagues; it is us. A chronic inflammatory and whole-body disease that affects the pelvic region, uterus, fallopian tubes and cervix, it can spread to the bladder, bowels, lungs and even to the brain. It causes persistent, excruciating, debilitating pain. This pain is so intense that it can leave young women confined to wheelchairs or to bed, missing work, missing school, having to give up work and forcing them to drop out of school. It up-ends lives, ruins lives and puts the lives of women and girls at risk. The story of endometriosis in Ireland is the story of women denied proper care and treatment, suffering in silence, forced to travel abroad for treatment if they can. Even though it is a race against time with this disease, women are left waiting an average of nine years for a diagnosis. Women told us of their experiences of not being believed, being told it is all in their heads, being told that this is just how it is and that the unbearable bleeding and pain is just part of being a woman and of a normal menstrual cycle. Women told of being told to woman-up and sent home with a hot water bottle and a couple of Ponstan tablets. Women and girls are ridiculed, sidelined and shamed just for seeking medical help.

I have been in public life for a long time but I have never been at meetings so raw with anguish and anger. Women shared their most intimate stories of trauma hoping to be finally heard. Some were young women whose condition got so bad they lost their wombs. They were left with no option but to have hysterectomies and were robbed of their chance to become mammies. Women stood up and told us that the pain of labour and childbirth without an epidural or any pain relief was a walk in the park when compared to the pain of endometriosis. A mother shared her story of the night when she was again taken to hospital by ambulance because the pain had become so bad. Even though she was in agony, all she could think about was her young son saying, "Mammy, I do not want you to die. You are the best mammy in the world." All she wanted to do was to hug that child and tell him he was the best son in the world for being so brave for her. Women are at the centre of this crisis but endometriosis attacks the whole family. It impacts on children especially. Women told us about the heartache of leaving their children behind as they were forced to travel out of Ireland to seek diagnosis and treatment in London, Athens or Bucharest. It is the incredible love and solidarity of families that has held these women up when they have been so badly failed by the State, as endometriosis gnaws away at their bodies and at their lives. They are held up and supported, too, by such brave advocates as Kathleen King, Cate O'Connor, Vanessa Waldron and others.

It is unacceptable that women's healthcare is still at the bottom rung of the ladder. Tonight, we bring this motion and we are here to say enough is enough. Tonight, we break the silence together. We are standing together to demand that the Government deliver a gold-standard, multidisciplinary centre for the treatment of endometriosis here in Ireland, because no such service currently exists, so that women and girls are diagnosed quickly and early and get the medical interventions they need, including specialist excision surgery when required. It is beyond disappointing - in fact, it is enraging - that the Government, with a shameful amendment, pushes back against the first-hand experiences and real trauma of women. By deleting our motion in its entirety, the Government attempts to delete the women and girls' calls for better. It is a shocking amendment-----

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