Author: Holly Peters McGrath, Undergraduate researcher on the PatentsInHumans project & 4th year Bachelor of Laws (LLB) student, School of Law and Criminology, Maynooth University.
In October 2025, the Irish government introduced the first national framework for the management of endometriosis in Ireland. As someone living with endometriosis, the adoption of this national framework is a great starting point to ensure the essential healthcare needed for endometriosis patients in Ireland. However, it is just as crucial that this framework undergoes ongoing evaluation and consistent scrutiny in terms of its implementation in practice to ensure it addresses patient needs. This is vital to guarantee that the framework is informed and centred by patient experiences and outcomes. I find this critical to ensure that no one faces the same dismissal and neglect that I experienced in seeking diagnosis and treatment for endometriosis. I speak for many endometriosis patients when I say that we have fallen through the cracks of previous healthcare frameworks, I refuse to let this framework do the same. Our struggles need to be recognised and cared for.
My hope for this new national framework is that it will provide a clear and accessible pathway for endometriosis patients to obtain timely diagnosis and treatment for the management of endometriosis. A key consideration for endometriosis patients in navigating the vast medical world is to stay informed. With this aim in mind, this blog seeks to set out some of the main elements of the new national framework, and to highlight some of the remaining concerns around the delivery of healthcare for endometriosis in Ireland.
What is Endometriosis?
Before analysing the new framework, it is important to reflect briefly on what endometriosis is. Endometriosis is a chronic inflammatory condition, which involves the growth of ectopic endometrium (endometrium like cells) outside of the uterus. Endometriosis is a condition that has in many cases been ignored and neglected for many years. It is a condition that stops women living their day to day lives. Unable to attend work, school or activities, endometriosis can have a significant impact on many aspects of a patient’s day to day life. We are watching our lives pass us by as we are in excruciating pain. Endometriosis can be considered a hidden disability – the symptoms of this condition are debilitating and persons with endometriosis encounter stigma. Many patients feel the condition and its symptoms are not taken as seriously as the condition that it is.
Endometriosis tissue can act like glue binding organs together, it can invade organs including the bowel and bladder and can directly affect their function. As addressed in the previously published blog by Cassandra Murphy, there can be significant delays in obtaining a diagnosis, and in some cases up to 11 years for women in Ireland to obtain a diagnosis of endometriosis from the onset of symptoms. Knowing from my personal experience, these years of waiting are filled with neglect, dismissal and defeat.
New Irish Framework for the Management of Endometriosis
On the 18th of October 2025, the HSE released ‘The National Framework for the Management of Endometriosis in Ireland’ alongside the release of the ‘Endometriosis Surgery Abroad Scheme’ (more commonly known as the ESAIS). This was a breath of fresh air, as for decades we have been waiting for this issue to be addressed. This new framework emphasises the multi-disciplinary care that is needed to manage a condition like endometriosis. This framework is centred around four key guiding principles: 1) Multi-disciplinary care and individualised care pathways; 2)Enhancing quality of life; 3) Flexible and responsive model of care; and 4) Service- user empowerment. (p. 20-21).
The framework is split into four different levels of care, as follows; primary care, secondary care; regional specialist endometriosis service and supra-regional specialist endometriosis service. A key element of the framework is that there should be a person-centred framework for access to treatment ‘at the most convenient and accessible level for the service user’. (p. 22) The level that a patient is referred to depends on the severity and complexity of the condition. The framework intends to use already existing facilities to provide endometriosis care in Ireland, these facilities are spread across the six regional health authorities (RHA’S). These RHA’s were established under Sláintecare, to improve accessibility by delivering healthcare directly to different areas all over the country. (p. 21)
Primary care refers to General Practitioner (GP) services. As stated in the framework a key development is for GP’s to treat symptoms such as painful period or heavy menstrual bleeding as ‘suspected endometriosis’. This is to address the difficulty in diagnosing endometriosis as ‘a definitive diagnosis of endometriosis often requires laparoscopic confirmation’ (p. 23). The framework advises symptom management by hormonal suppression through the combined oral contraceptive pill or progestin-only pill or the use of anti-inflammatory drugs (p. 23). The framework emphasises the importance of distinguishing between patients with complex cases, which is defined based on the severity of their symptoms and patients whose symptoms can be managed at primary level. It states that: ‘[i]n some cases, a GP may use their clinical judgment to assess the severity and impact of presenting symptoms.’ (p. 24)
Secondary care is where surgical intervention occurs and when primary care is not sufficient for symptom management. A surgical intervention/diagnostic procedure is the most common way in which endometriosis is diagnosed. Where surgical intervention is recommended, the framework places emphasis on the importance of ensuring patients’ informed consent and the need to ensure adequate information is provided to patients. As part of this process, patients need to be made aware that this procedure can be invasive and the surgery does not guarantee the cure for this condition. The framework states that ‘[w]omen should be counselled on the risks and benefits of any surgery, including the probability of disease recurrence, which has been reported in the international literature as varying from 6% to 67%’ (p. 25) Initially this surgery may solely be for diagnosis but if endometriosis lesions are found, subject to patient consent and where clinically appropriate, these can also be surgically removed .(p. 25)
A regional specialist endometriosis service is also outlined in this framework, there will be one such service developed in each of the 6 RHA’s which are explained above. The framework lists the team of professionals that will be located in these regional specialist services (p. 26) , stating that the lead of the team will take part in obligatory training each year. There is an emphasis placed on ‘one-stop basis’ visit for service users, this is to ensure that upon their first visit a patient will be seen by multiple specialists in the team. Alongside these service developments, there has been recent developments of six to seven new surgical hubs, to improve surgical time for endometriosis cases. (p. 27)
Finally, the supra-regional specialist endometriosis service is a service that is provided for particularly complex cases. Like the regional specialist service it will be based around a one-stop basis providing multi-disciplinary care in one setting (p. 28). These services will be located in Tallaght, Dublin and Cork. Through this service there will also be a creation of a fellowship that specialises in treating endometriosis. (p. 29)
Implications of the New Framework for Patients?
This framework is a step in the right direction; it is a recognised pathway for endometriosis care for patients. It was a recognition from the HSE of how endometriosis patients have continuously fallen through the cracks of any existing healthcare facilities. The framework’s commitment to ensuring the education and training of medical professionals is also an important step to ensure tailored training for this speciality in Ireland. (p. 29).
Nonetheless, there are still gaps in the framework such as the use of suspected endometriosis at primary care level. On the one hand, this could be beneficial if it means some patients can obtain treatment more quickly, if GPs can provide treatment before having to refer on for secondary services. However, on the other hand, if a patients’ symptoms can be managed at this level and are presumed as being ‘suspected endometriosis’ they may not be referred onwards. As noted in the framework: “Many will be managed by their GP without the need for onward referral to secondary level services” This potentially could act as a barrier for patients to receive an official confirmed diagnosis of endometriosis. Remarking on the key reasoning for this use of ‘suspected endometriosis’ in the framework is to avoid delays for patients receiving diagnosis. Although a key issue, with the use of ‘suspected endometriosis’ that in many cases the condition cannot be supressed by medication it needs to be diagnosed and removed. If patients are receiving care at primary care level, they do not have the opportunity to receive the proper and effective care. There is also no psychological support in earlier levels of care, which is crucial when facing an isolating chronic illness such as endometriosis.
ESAIS Scheme
Alongside the new national framework, as briefly mentioned above the ESAIS scheme has also been established which allows for patients to apply for treatment abroad from a pre-approved list of clinics provided by the HSE. To apply for this, patients must receive a referral from a consultant gynaecologist, in this referral they must work together with the patient to choose a clinic abroad, this may then be accepted or rejected by the HSE. The costs that are covered by this scheme are a pre-operation appointment, one endometriosis surgery and aftercare and any scans or blood tests that are directly related to your treatment.
There have been calls for the referral requirements under the ESAIS to be reconsidered – as currently a patient can only be referred by a consultant gynaecologist. This remains as a barrier for most patients, due to the waiting times surrounding this level of care in Ireland. There are a total of 38,060 patients waiting on an outpatient gynaecology appointment throughout the country. Just to clearly paint a picture of the extreme waiting times for patients to receive an appointment like this.
For example, gynaecology waiting times the Rotunda has an average wait of 121 days for a first appointment and 166 days for an inpatient appointment. University Hospital Limerick has an average waiting time of 126 days for a first appointment and 55 days for an inpatient appointment. The Coombe has an average wait time of 120 days for a first appointment and 132 days for an inpatient appointment. To receive a referral from a consultant gynaecologist as one of the requirements to receive care abroad, it is inaccessible and unacceptable with these average waiting times across the entire country.
Given these long waiting times, patients may understandably want to go abroad for quicker access to health care, however, their ability to do so is limited by the referral scheme limitations. There is also a restricted list of endometriosis centres that patients may receive care in abroad, many centres that have previously been used by Irish women are excluded from this list. Indeed concerns around the ESAIS scheme have given rise to calls from various groups for reform of the system, including a petition which highlights many of the key issues with the scheme and calls for change. Such as the referral requirements for a consultant gynaecologist and a wider access top endometriosis centres abroad.
Workplace Supports for People with Endometriosis: Statutory Leave Petition
Alongside these issues around healthcare diagnosis and treatment for endometriosis, the impact of the condition for patients’ everyday life can be significant. For this reason, there is currently a petition by HerVoice calling for a statutory leave scheme for people living with endometriosis and adenomyosis, so that we feel protected in the workplace. This petition is currently open, and I urge you to sign this petition.
Reflections
Six years into my journey, I was diagnosed with stage 4 endometriosis in August of 2025. Having been through this myself I do not want to see other patients face the same neglect and dismissal I did. This has inspired me to advocate and fight for change. This new national framework is only the start of providing a better system of healthcare and diagnosis of endometriosis in Ireland; I will continue to demand for the greater standard of care endometriosis patients deserve.
