Dr. Cliona Murphy, National Clinical Director, Women’s and Infants Health Programme, gave a presentation to members on Endometriosis.
The following outlines comments and queries raised by members and responses from HSE representatives.
- Guidance and management of condition prior to 2020
Within Ireland and many other European countries, historically, endometriosis was managed in a fragmented way across clinics, with no specific plan or pathway. From approximately 2017, countries like France, the UK and Australia started developing policies or national strategies for Endometriosis.
- Symptoms and comorbid conditions often not linked to Endometriosis and patients being misdiagnosed
Overlap of conditions can make diagnosis challenging, and GPs are cautious to avoid misdiagnosing serious conditions as Endometriosis. Some patients may have multiple coexisting conditions, and there is a genetic component to endometriosis, with family clusters sometimes seen. Early diagnosis is important as many women develop a tolerance to pain and may delay seeking help, normalising symptoms that are not typical.
- Need for a multidisciplinary team for Endometriosis management, including neurology
Acknowledgement of importance of integrated care with clinicians across specialties, such as neurology and gynaecology, communicating to understand the full patient journey.
- Clarification on surgeries for endometriosis, particularly advanced or end-stage cases
Surgery for endometriosis depends on the severity and type of disease. Superficial endometriosis: small visible lesions are often excised via laparoscopy. Most cases fall into this category. Complex disease: large nodules or organs stuck together may require longer, carefully planned surgeries, possibly using robotic-assisted minimal access surgery. Rare surgeries: very unusual cases may need to be done abroad because of low local case numbers and the need for specialised teams. Hysterectomy may be considered for women with adenomyosis who have completed their family, but for most endometriosis cases, it is not standard treatment.
- Requirement for additional paid leave for women suffering with reproductive symptoms
Spain and Portugal have introduced period leave to acknowledge women’s reproductive health needs. Similar policies may spread across the EU. Women often face both biological challenges and caring responsibilities.
- Clarification on whether the apparent rise in Endometriosis cases reflects an actual increase or just improved diagnosis
Endometriosis appears to be more prevalent now, partly due to modern lifestyle and biological factors including more menstrual cycles over a lifetime, genetic influences, environmental exposures and biological factors in cell development.
- Management of cases through non-pharmacological interventions, including diet, supplements and sea dipping
Ancillary and non-invasive therapies are important for Endometriosis. Supplements, sea swimming and other wellbeing approaches should be explored by individuals as part of management.
- Clarification on why Endometriosis is not considered a cancer
Endometriosis is not considered a cancer. Cancer involves rapid, uncontrolled cell growth and potential metastasis, whereas Endometriosis lesions grow slowly over time.
- GP training and awareness of Endometriosis
The HSE works closely with the Irish College of General Practitioners (ICGP) to improve GP awareness of women’s health issues, including Endometriosis. Initiatives include weekly webinars on major topics and community gynaecology programmes, where GPs can upskill and earn diplomas in specific areas. Engagement varies among GPs, therefore, there may be differing levels of knowledge. Efforts are also being made to raise GP awareness through the Endometriosis Association, including posters and TV screens in surgeries.
- Engagement with any patient advocacy groups
The HSE engages regularly with patient groups, such as Endometriosis Ireland, to gather feedback. Patients also reviewed the framework and provided input on language and perspectives. The presenter offered to engage with members who shared their personal journeys with Endometriosis at the meeting.
- Request that presentation be circulated to include a glossary of acronyms
Noted.
- Option on whether annual funding will be sufficient to achieve the aims and objectives of the framework
There are some concerns in relation to tracking funding and posts for Endometriosis services under the new regionalised system. Flexibility in funding means that earmarked posts might be repurposed where recruitment is difficult. However, this is acceptable if it continues to benefit services overall.
- Sufficient staffing to implement the framework
The recruiting of some specialist staff can take time. However, encouraging clinicians to view Endometriosis care as a rewarding specialty has helped with recruitment. Specialist nurses are generally enthusiastic about new services, making recruitment easier. Roles like women’s health physiotherapists with an interest in Endometriosis are also attractive and easier to fill.
- Education in schools in order that young girls understand normal menstrual pain versus potentially problematic
The Department of Education is rolling out a school programme on menstrual health aimed at teenagers. The focus is on understanding what is normal versus abnormal, providing a baseline for comparison. While the programme centres on periods, it is acknowledged that for many, the main issue is chronic pain and other symptoms not directly tied to menstruation.
- Concerns that the contraceptive pill may mask symptoms
First-line medical treatment (like the pill) is generally preferred as early surgery can have disadvantages, such as adhesions and future complications. There is a need for more paediatric and adolescent gynaecologists, though some experts exist in the Rotunda, Coombe and Holles Street hospitals with international training experience.
- Diagnostic methods for Endometriosis – option of hormonal blood tests
Currently, no blood test exists for diagnosing Endometriosis. A saliva test is under evaluation and undergoing trials in France. Which patient cohort it would benefit most is still being determined. If validated, it could become a useful diagnostic tool and potentially reduce the need for invasive laparoscopy.
- Co-ordination between IVF clinics and the HSE
Suspected Endometriosis cases are now fast-tracked, with fertility hubs and Endometriosis hubs often co-located. Teams collaborate to determine whether surgery or IVF is best for each patient. Many fertility specialists have training in Endometriosis, ensuring they consider impacts on fertility, such as preserving ovarian reserve during surgery.
- Endometriosis not just a menstrual issue, but a chronic women’s disease
Endometriosis is not merely a woman’s or menstrual issue, but a chronic disease. Its severity can be comparable to conditions like Crohn’s disease or rheumatoid arthritis. It significantly impacts daily life, planning, travel and overall wellbeing. There is a need for greater awareness and understanding among the whole population.
- Challenges, including public waiting lists and travelling abroad
Challenges remain, including waiting lists and limited access to non-cancer gynaecology surgeries. Difficulties in recruiting specialists is linked to limited surgical opportunities outside major centres. Patients may travel abroad for treatment due to local delays; however, it is recommended they attend reputable centres providing continuity of care. Efforts are being made to improve surgical pathways, though inequalities between regions still exist.
- Ryeqo medication for Endometriosis
Currently, only Endometriosis specialists can prescribe a hormonal treatment (combination of oestrogen and progesterone) as an alternative to injections for severe Endometriosis. It is mostly available to private patients. It is currently being evaluated by the Medicines Management Programme with early evidence suggesting it works well for some patients, though not all. Wider availability is expected within 6–12 months, potentially reducing the need for surgery and providing a less harsh alternative to injections.
- Requests to invite someone to address the Forum to share their daily lived experience of Endometriosis and give members a better understanding on the impact of this chronic condition.
Members who shared their experiences will be contacted.