Ms Ilanna Darcy:

I thank the Chair and committee members for inviting the Endometriosis Association of Ireland, EAI, here today. By way of introduction, I have endometriosis. I was diagnosed with polycystic ovary syndrome, PCOS, when I was 16 and endometriosis when I was 36. We are delighted to have this opportunity to open a dialogue with the committee, which we hope is the first of many, and to discuss what can be done to help people suffering from endometriosis. I am going to start with an overview of its effects and will then speak about some of the progress that has been made to date, our view on current issues, possible solutions and then a bit about us as a charity.

Endometriosis is a chronic and progressive inflammatory disease. It can manifest in many different ways, it has been found on every organ of the body and its effects are far-reaching within society. I am going to speak about five main areas.

While not a menstrual disorder, endometriosis is usually triggered during teenage years with the hormonal shifts that accompany the menarche. Young girls can experience intense pain, discomfort and heavy periods. Sufferers are frequently dismissed by doctors and sent home with pain medication or oral contraceptives. However, for most, these solutions do little to help. This can end up leading people to self-medicate and to rely on pain medication in the long term. We are all aware of the catastrophic outcome this can have

The next issue arises during reproductive years. Endometriosis often leads to fertility issues. For those who do not present with pain or those on birth control, the diagnosis might only be triggered when seeking fertility treatment. Surgery is often performed to create a window of opportunity for conception but, for some, this may be too little too late. There are cases where young women have lost their wombs or ovaries before they have even considered having a family and some have simply been left unable to have children as a result of poor medical guidance or the damage the disease has done to their bodies. On top of this, there is added anguish due to the inappropriate setting of endometriosis treatment, which is primarily conducted in maternity hospitals.

The third cohort are in the perimenopausal or menopausal stage. The oestrogen dominance associated with endometriosis patients can lead to complications in prescribing the right combination and level of hormone replacement therapy, HRT. Some women who have undergone a hysterectomy describe having to fight to get progesterone as part of their HRT regime. The common medical guidelines are that progesterone is not needed if you do not have a womb. However, endometriosis exists in the body outside the womb and progesterone can still be needed to help manage and control its symptoms long past menopause. These women can also face issues accessing the care they need as they no longer fit within the scope of gynaecological services.

The next area has regard to other related conditions. Endometriosis is correlated to other oestrogen dominance-linked conditions like PCOS, fibroids and adenomyosis. It is a complex condition with widely varying symptoms and unpredictable development. This can often lead to misdiagnosis and mistreatment. It is often mistaken for things like ovarian cysts or irritable bowel syndrome. There are also some startling studies that suggest other worrying comorbidities such as various cancers, autoimmune diseases like multiple sclerosis and inflammatory bowel disease, asthma, allergic reactions and cardiovascular disease.

The last area we will speak about today has regard to mental health and how this condition affects people's day-to-day lives. The endocrine disruption associated with endometriosis can cause anxiety, depression and mood fluctuations in many patients. In addition to this, there is the emotional stress for those living with the debilitating pain endometriosis can cause. I use the word "living" but is that even the right word to use? Are they really able to live or are they just finding ways to cope on a daily basis? There can be pelvic pain, pain that radiates down the legs or up the back, pain during intercourse or pain passing urine or stool. This can be mild and intermittent or chronic and continuous. There are those living with the chronic fatigue associated with endometriosis, a grinding fatigue that no amount of rest or healthy behaviours fully alleviates. There are also those living with the destruction the disease has done to their bodies after years of misdiagnosis and mistreatment and, for some, the turmoil of never being able to have children. For school goers, there can be frequent absences and an inability to participate in sport and social gatherings. For those able to work, careers and performance can be impacted and, worse still, some are not able to work at all due to the debilitating impact the condition can have. Furthermore, the financial burden on patients spans decades, causing additional stress.

To summarise, endometriosis is a misunderstood, misdiagnosed and mistreated condition that has far-reaching consequences for people assigned female at birth of all ages and socioeconomic backgrounds. The age at which the menarche is starting is getting younger. The life expectancy of females is getting longer and women now represent more than 50% of the total population. Nationally, and globally, we speak about the need for gender balance in society yet we lack an effective, cohesive women’s health strategy.

The EAI and a host of independent advocates have been campaigning on behalf of the endometriosis community since 1987 and were invited here by Deputy Gino Kenny to present in the AV room in December 2019. We then met with the health representatives of the different parties throughout 2022. There has been some momentum since then with the Coombe announcing its enhanced endometriosis clinic and the HSE funding an endometriosis clinic in Tallaght with plans for one in Cork through the women's health action plan. We welcome the positive steps taken here and with the development of the national endometriosis framework but we have concerns over how well understood endometriosis is and whether the needs of the patients have been fully considered. We welcome the opportunity to discuss this further this morning.

Fundamentally, there is still a long way to go and there are still many issues. Long wait times for diagnosis and treatment persist. Factors contributing to this include the lack of skilled surgeons, with only a small number trained in excision surgery, and insufficient dedicated theatre time for endometriosis patients. For anyone in severe pain, even a month is too long to wait. Women are still having to travel abroad to get the treatment they need and, while the cross-border directive was put in place to help facilitate this, not everyone is eligible, there are up-front costs that leave it out of reach for many and those who do travel are faced with the distress, loneliness and complications associated with travelling abroad for medical treatment. The Irish healthcare system is letting these women down and adding to their emotional and financial burdens.

There are costs to both the individual sufferers and society. Patients on public waiting lists may end up needing to go private to get the treatment they need or to go abroad as I have just described. Some have no choice but to stay on the public waiting list. Misdiagnoses can waste precious time and resources and add to unnecessary suffering. Complementary treatments may be used in an attempt to alleviate suffering and there may be monthly prescription bills for medication to mask the symptoms or pain. As I mentioned earlier, there are some who cannot work at all, who cannot work full-time or who need extended time off from work or school and this further compounds the personal and societal cost.

What outcomes are we hoping for for endometriosis sufferers and how do we believe they can be achieved? The first relates to education. We wish to create awareness in young girls and empower them with the information they need to get the right diagnosis or treatment and to continue to remove the stigma around talking about women’s health issues. We need to ensure that there is awareness that it is not normal to have menstrual pain that impacts day-to-day life. This could be done through school programmes like the ones rolled out in New Zealand and France and through regular awareness campaigns.

The second outcome we hope for is a reduction in the waiting time to get a diagnosis. Early diagnosis and intervention is key to preventing long-term damage and suffering. We seek GP training through continuing professional development, training for medical students at the undergraduate stage, training in imaging skills and how to identify the disease as it can often be missed or misread and an increase in the number of specialised surgeons in Ireland.

The third outcome hoped for is a reduction in the waiting time for treatment in Ireland. We need more trained endometriosis specialists within accredited multi-disciplinary clinics to provide effective treatment pathways, including aftercare.

The fourth relates to research. The treatments available today do not cure endometriosis. They suppress it through either hormonal treatments or surgical intervention, which can provide varying degrees of temporary relief depending on the individual case.

To understand this complex, multifaceted disease, increased funding should be made available. Dedicated research staff within centres of excellence and collaboration with academia are also needed. This would provide critical mass to further research. We understand this would require significant resources and funding but the cost of not doing it would, in the long run, be far greater. It is still estimated it takes on average nine years to get a diagnosis. One in ten women is thought to be affected, and given the disease affects women from age eight to 80, the number of women affected is likely to be underestimated and will continue to grow.

The EAI does not receive any Government funding. Ours is a small charity run purely by volunteers. We are affected either directly or indirectly by endometriosis, so can speak at first hand about the issues I have described. As a charity, we are now close to a full complement of board members and, thanks to the generosity of our community, we are for the first time in a position to employ someone part time. We believe this will go a long way to ensure we are better equipped to deal with the volume of people who reach out to us, whether directly or indirectly through the HSE, to expand our reach within the endo community, to unite the voice of sufferers and advocates and to start having regular open dialogue, with this committee or other stakeholders not here today, to ensure that, collectively, we will keep the patient voice at the centre of policy.