Global healthcare systems are wrestling with the management of an increase in people requiring care in complicated diseases. Supporting patients with long term chronic conditions such as endometriosis has become an even more difficult task than before the pandemic.
One in 10 women are reported to have endometriosis, and it is imperative that this is discussed as part of women’s health. I have lived with endometriosis for over 25 years and have first hand experience of some of the associated problems. It remains unclear why this disease, which has a huge socioeconomic burden, is not considered a priority health issue. The World Health Organization is yet to provide a position paper on this important issue, as are many global healthcare systems.
Endometriosis is a highly complex, lifelong condition with many associated comorbidities. Pelvic invasion of endometriosis remains common, and further complications, such as the spread of endometrial tissue into the intestines and lungs can also occur in advanced disease.
On average, diagnosis may take up to 7-8 years, and a diagnostic laparoscopy remains the current gold standard for diagnosing endometriosis, according to the National Institute of Health and Care Excellence in the UK. Long term management of the condition has to cater for varying needs of patients, which can vary considerably depending on the stage of the disease and patient’s circumstances. A delayed diagnosis, coupled with the lack of holistic treatment pathways, remains an obstacle to optimal management of the condition. Essential collaborative work between patients, clinicians, healthcare systems, and policy makers is needed to resolve this health issue urgently.
In the UK alone, minimal information is available to the general public to increase awareness of endometriosis. Additionally, research funding is limited, and a lack of knowledge about the disease and its associated comorbidities has hindered improvements in clinical practice. The consequences of chronic pelvic pain, a key feature of this disease, are exacerbated by late diagnosis. Poor mental health is common, and most patients require support, according to a report from the All-Party Parliamentary Group on Women’s Health in conjunction with Endometriosis UK. Yet, currently within the UK, mental health services do not provide a dedicated service for women with endometriosis. Mental and physical health share a symbiotic relationship, and this is particularly true in the case of endometriosis. Patient reported mental health outcomes commonly include depression and anxiety, although the distinction between symptoms and disorders remains a subject of debate for patients and healthcare professionals. Additionally, screening for any potential mental health conditions in patients with endometriosis is not included in the “to do” list of healthcare organisations, which may be because of the stigma associated with mental health conditions and the prevailing lack of comprehensive understanding.
A patient with a long term health condition may have a difficult journey complicated by learning, accepting, and managing a disease, which may be an emotional and even traumatic experience for some. Tackling and addressing key deficiencies is therefore essential to improving the long term quality of life of women with endometriosis.
These factors should be discussed as are reflected in real patients’ experiences that are considered important even by independent regulatory authorities. Employers need to support women living with endometriosis with practical adjustments and a work culture of no discrimination in order to support them to pursue and advance in their careers, which many find difficult. Endometriosis UK has set up an ‘endometriosis friendly employer scheme’ to help employers and women with the condition. Similar schemes could support all parties involved and thereby prevent a negative impact on businesses and the wider economy.
While healthcare systems continue to manage and potentially recover from the covid-19 pandemic, the care of patients with endometriosis continues to be a low priority. Many important questions remain unanswered because of the lack of comprehensive clinical research available—for example, why aren’t healthcare organisations assessing the needs and lived experiences of endometriosis patients and advocates before deprioritising their care during this difficult time? What are the barriers within healthcare systems to understanding and addressing the concerns of endometriosis patients? What are the risks of long-term exposure to endometriosis and associated mental health conditions?
The lack of calls for dedicated endometriosis funding that could support suitable research is another substantial obstacle. Promoting disease awareness and destigmatising some of the complex patient reported outcomes, such as poor mental health, and improving disease literacy among the general public and healthcare professionals would help develop relevant clinical research questions.
It is important to evaluate and tackle the fundamental issues linked to endometriosis patients, as well as their families and communities, to improve their care. Overlooking this issue would be detrimental to the patients, healthcare systems and society in general.
Gayathri Delanerolle, University of Oxford, UK
Competing interests: none declared