Debate contribution: Endometriosis Care

Debate contribution by Mrs Linda Dillon on 29 September 2025.

MLA

Mrs Linda Dillon

Party at the time

Sinn Féin

Date

29 September 2025

Type

Debate contribution

Business

Private Members' Business

Heading

Endometriosis Care

Assembly identifier

Official Report component 5139400

Read the official Assembly record

Text

I beg to move

Go raibh maith agat, a Phríomh-LeasCheann Comhairle.

I propose the motion and accept the amendment that our Alliance colleagues have tabled. I must be honest and say that the issue makes me really angry. I am angry on behalf of the many women and girls who have been disbelieved about their real and severe pain, which is minimised, discarded and ignored. Endometriosis is not rare; it is a serious, chronic disease that affects at least one in 10 women, and we know that it affects probably more than that. It tears lives apart and causes excruciating pain, infertility, internal scarring and damage to organs. The disease affects every element of life: education, employment, fertility and relationships. What is the response from our health systems? Women wait years just to get a diagnosis, and treatment plans are either non-existent or far from the recommended standard of best practice. That is not good healthcare; it is cruelty. I have sat in rooms across this island with women who have told their stories of suffering with endometriosis through tears, anger and exhaustion. Girls are told to tough it out. Similar words were used recently on the issue of women's health by a certain US president. Women are forced on to the pill for years to mask the pain, not treat it, and undergo unnecessary surgeries. Expert evidence says that short-term treatment options — ablation surgery, chemical menopause and contraceptives — mask the disease and allow it to spread, often with significant damage to organs, including the bowel and bladder. All those options are still offered as first- and second-line management of the condition. There are women who had no choice but to leave this island and spend thousands of pounds to undergo major surgery abroad because there was nowhere here for them to turn. That is the reality for thousands of women across the island today. This is not just about endometriosis; it is about how women's health is treated across the board, how pain is minimised and symptoms are dismissed and the fact that there are no services, with women left to rot on waiting lists. It is about a health system that still treats women as an afterthought, and that needs to end. The motion is a demand for justice and dignity and for women to no longer be left behind. International best practice is crystal clear: the gold standard is specialist-led excision surgery delivered within a full multidisciplinary team (MDT). That means proper imaging, pain specialists, colorectal and urology care, fertility services and psychological support all working together. The women on this island deserve nothing less. I understand that the Minister and his Department are under pressure not only financially but due to the number of specialist surgeons and specialist nurses who are required. The obvious answer is to work together, North and South and across these islands, to pool expertise, share infrastructure and make sure that, no matter where you live on this island, you get the same care. That is what an all-island health service should look like. It is not just sensible; it is urgent. The same challenges are faced. I welcome the Alliance amendment on the women's health action plan; in fact, this is exactly the kind of case that proves why a women's health action plan is so desperately needed, not as a glossy document that gathers dust on a shelf — I appreciate that the Minister has outlined that that is why he wants it to be an action plan — but as a living plan with targets, timelines and accountability that delivers change for women. Sinn Féin is fighting for action on endometriosis and women's health across the island. In the Dáil, we have taken the issue directly to the Minister for Health. We have stood with women outside Leinster House. We have forced the issue on to the agenda, and we will do the same here. Women have waited long enough. Their lives have been put on hold long enough. Every month that passes without action means more women and young girls suffering in agony, more women having fertility problems and more families broken by the silent suffering that the disease inflicts. I ask the Health Minister to listen and to act. Do not leave those women floundering, relying on Facebook pages to get advice on how to cope — not to thrive but just to cope. I ask Members to stand with those women, support the motion and the amendment and send a clear message by calling on the Minister and the Department to bring forward a specialist service with targets for diagnosis and treatment; work with your counterparts in Dublin to build a joined-up, all-island approach that uses every ounce of the expertise that we have for better outcomes; and bring forward a women's health action plan as a matter of absolute urgency. Women here have been ignored for far too long, and their pain has been written off. They have been made to feel invisible. Today, we have a chance to change that. The motion must be more than words on a page. I know that motions are non-binding, but, Minister, you can choose to be bound; you can choose to do something. If you truly want to tackle health inequalities, give us the plan that shows us that women's health and well-being matters and that it will not be only the women who have the financial means who get the treatment and care that is so badly needed. I reached out to a number of women and girls whom I have been in touch with over the past few years — I know that all Members have been in touch with many women in this circumstance — and asked them for their thoughts on what they would like to be reflected today. They are the ones who are living it. It is they who will suffer if nothing is done, but it is they who will benefit if we get it right. Olivia said that we need:

"More information in schools for young people, more research and funding and to start understanding this disease".

Cara told me about having to go private to be seen, having to attend A&E on a number of occasions and being discharged with pain relief that made her sick and did not deal with the excruciating pain. She said:

"We need clear pathways for diagnosis and treatment of endometriosis".

Anne was a teacher who was passionate about her job and her students. She had to leave her job and was left almost completely immobile as a result of endometriosis. She wrote this to her younger self:

"I’m glad at 14 you didn’t know what was ahead of you. When every girl around you celebrated their change into adulthood, the giggles … innocent comments — the hushed word ‘period’ — your demon had begun. I'm glad you didn’t know how strong you would have to become. How it would embed itself into every part of your life. While at 14 you were winning cross country medals, dancing medals, fighting with your brothers that you were the better footballer and spending as much time in your kayak at the beach — jumping off piers and cliffs … hard to feed and exceptionally active and fit, by 6th form you would struggle to get off the sofa and be confused by the physical pain. I'm sorry that you had to watch your parents cry. Watch them fight for you. Organise full body MRI scans — a young healthy girl at 16 years of age — top grades, head prefect — all of a sudden changes and is experiencing pain and no one thinks it is weird or listens to you? Yet this is when you would learn that no-one would believe your pain and how your body was attacking itself. I'm sorry that you struggled to walk to your A level English literature class on the third floor of St Marys and when you did you would struggle to catch a breath. It will be years — and I mean years — before you recognise this as your normal and a result of living with endo and you will have to accept it. I'm sorry that you felt less. That you felt not tough or strong enough. I'm sorry that during this process none of the professionals who should have supported you showed up".

That is only a short excerpt of a brave, articulate, heartbreaking letter written by an amazing woman who became a shell of herself and had to spend thousands of pounds to go to England for surgery to try to become the woman that she wanted to be and was meant to be — the mother, the wife and the daughter that she aspired to be — and not the burden that, she felt, she had become. I urge you all to read that letter. The Minister's officials were given a copy of it at an event in the Long Gallery.

I will finish with the words of Mary Lee, a Monaghan-born woman who became one of the most fearless suffrage campaigners over a century ago. She said:

"My cause is the cause of womanhood, and no bluster or denunciation will silence me while one wrong to womanhood exists of which I have knowledge or against which I have the power to protest."

Today, I am protesting, not for the sake of protest but in the genuine hope that the Minister, our health service and our clinicians will work together to do better for women with endometriosis right across this island.

1,612 words. Text as published by the Northern Ireland Assembly.

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