Author: Cassandra Murphy – PhD Researcher in the Department of Psychology and IdeasInALL editor.
Research Stream: Lived Experience
March is a month for shining a light on women’s health For many, this is a time of activism, and a time to push forward the basic needs of those in chronic pain. March is Endometriosis Awareness Month.
Endometriosis is a chronic condition that statistically affects 1 in 10 individuals with female reproductive organs worldwide. This condition often involves debilitating pain for those who suffer, leaving them missing out on school, work and social activity. To put this condition into context, 1 in 10 people worldwide are diagnosed with diabetes. Now, consider the fact that endometriosis only affects half of the population, that figure is striking. More striking again is the fact that in Australia, a country well known in the endometriosis community for its pioneering research and proactive attitude to endometriosis, it is believed this figure is actually 1 in 7. Why might this figure be so different across countries? The answer is because of ‘access to diagnosis’.
On average it is believed to take up to 11 years to get a diagnosis in Ireland for endometriosis. This is not an Ireland-only issue – this is a worldwide delay. One of the reasons behind this is the fact that the symptoms can be quite similar to other conditions. As per the Endometriosis Association of Ireland’s website, the common symptoms are: Painful Menstruation, Pelvic Pain (that radiates down the legs or up the back), Painful Intercourse, Bowel Problems, Fatigue, Premenstrual Syndrome, Abnormal Menstrual Bleeding, Painful Urination and Infertility. However, these are only the common symptoms. This is quite an individualistic and full body disease which has even been linked to immune-dysfunction.
Endometriosis is characterised by endometrial-like cells (similar to the cells that make up the lining of the uterus/womb) growing in other parts of the body. These cells can cause inflammation, leading to the extreme levels of pain individuals suffer. Up until 2022, it was believed that endometriosis has the potential to be found on any organ, except for the spleen. While most common in or around the reproductive organs (ovaries, uterus, rectum, bladder) it has been found as far away as the brain. However during the laparoscopic surgery of a young woman, and in the subsequent pathology report, endometriosis was discovered in a splenic cyst. Based on the location of the cells the symptoms may not be in the GPs list of ‘typical’ symptoms to look out for. Symptoms include brain fog, nerve pain, shortness of breath, lymph node swelling (similar to lymphoedema), shortness of breath and even mental health conditions to name a few. It is no shock that doctors are struggling to identify it in consultations, as they may be looking for the wrong thing. However, even when patients identify with text-book symptoms, they are getting dismissed as it is “just a bad period pain,” but clearly, it is so much more than that.
If you find yourself asking “if the pain is that bad, why is it not classified as a disability?” you are not alone! It is shown that up to 88% of individuals report a disruption to some element of their life (social, academic or work), leading them to miss out on daily activities due to symptoms of endometriosis. This is a conversation that was raised for the Oireachtas in 2021 by Deputy Clair Kerrane, and again just last month by Deputy Marie Sherlock. The issue is that a diagnosis of endometriosis does not automatically mean that your life is interrupted or that it interferes with your daily activities. For many, the endometrial-like cells can lay dormant and do not interfere with life until the individual is trying to conceive. Anywhere between 25% and 50% of infertility cases involve endometriosis. For many of those people, they do not find out until tests are run to screen for infertility. However, consideration needs to be taken for those who are suffering daily, misdiagnosed with Irritable Bowel Syndrome, Fibromyalgia or ‘painful periods’, and spend 11 years or more being told that the pain is in their head.
Maynooth University at large is at the forefront of research on the topic, with researchers in different Schools and Departments engaging with how best support of people experiencing this chronic illness. Research on endometriosis also speaks to the ALL Institute ethos and aligns closely with the mission of the ALL Institute where we are dedicated to interdisciplinary research that improves the lived experiences of individuals with disabilities and chronic illnesses, advocating for policies and innovations that enhance accessibility and quality of life.
Currently, endometriosis does not have a known cause or a cure. However, there is now a large body of passionate individuals who are working to explore a cure, or at least some urgently needed relief measures, for endometriosis. This March, talk to your loved ones about endometriosis. Endometriosis UK shared that “33% of women do not know what endometriosis is and 45% cannot name any of its symptoms and 74% of men do not know what endometriosis is.” Now that you have read this blog, you can change that. Support those with ‘painful periods’ and let us stop normalising women’s pain.