Endometriosis UK is one of the UK’s leading charities supporting Endometriosis sufferers. First established by volunteers as the National Endometriosis Society in 1981, they work to debunk the false myths about this disease, raise awareness and help people give a name to their pain. Many people don’t know of this disease, which affects 1 in 10 women and those assigned females at birth and has a worldwide average of 8 years in delays of diagnosis. The charity is made up of dedicated staff, volunteers, and trustees, many of whom suffer from Endometriosis themselves. Their work is pivotal as they raise awareness through volunteering and campaigning, have a support landline, and local support groups all over the UK. They have a number of Endometriosis specialists on their Medical Advisory Plan, and they provide a link to the website of the British Society of Gynaecological Endoscopy (BSGE) which lists accredited Endometriosis specialists’ centres, which enables sufferers to find the nearest specialist centre to them.
Endometriosis is a chronic invalidating disease, which often gets misdiagnosed or not diagnosed at all. Common symptoms include stabbing pelvic pain, severe pain during menstruation, large losses of blood, irritable bowel syndrome (IBS), urinary tract infections (UTIs), chronic fatigue and migraines, and pain during and/or after intercourse, infertility, and many more. Every Endometriosis case is different, and every individual reacts differently to treatments, which is one of the reasons why it gets misdiagnosed so often. Endometriosis is not only the individual’s problem, who must live with a disease disrupting daily-life activities, impacting partner, family and friends’ relationships as well as their work environment. It is also a social problem. Endometriosis has no cure, and a clear cause has not yet been determined by researchers. If one is fortunate enough to diagnose it early, they might be able to manage the symptoms and related conditions more easily. However, given the large misconceptions, poor medical training and overall disinterest in the illness, most Endometriosis sufferers get a clear diagnosis when things have already gotten pretty bad. For many years, it was known as the “Career Woman’s Disease” which says a lot about the impact of patriarchy on the stigma surrounding this illness. It was believed that women who put off pregnancy to pursue their careers would develop the disease. In reality, it is rather the opposite. If you suffer from Endometriosis, you can become infertile or be unable to successfully complete a pregnancy safely. You often have problems with giving your 100% at work since even on good days, your body is not capable of its 100% potential energy. Endometriosis is often accompanied by other chronic conditions which can be diagnosed at the same time or over the years, adding up to the disruption of an individual’s life. It is one of the many invisible diseases of our society, that is all but invisible to those who suffer from it.
The numbers speak clearly. Individuals can live on for years without knowing what they suffer from, being disregarded by doctors, and deemed as crazy, overexaggerating or playing the victim. Being unseen by society. So much so that they start believing it is all in their heads too. This can have a huge impact on their mental health and often lead to anxiety and depression. That is why the work of charities like Endometriosis UK is crucial. If you identify with one, some or many of the symptoms of Endometriosis, consulting a website, reading other people’s stories, or talking to someone who knows what you are going through, can literally save your life. In most cases, the more you wait, the more the disease grows, and the more irreversible its effects will be. Recently, more and more Endometriosis patients around the world have started social media accounts to tell their stories and make reliable information accessible to those who might need it. This has created an online network which is helping a lot of sufferers get their diagnoses faster. What do surgeons, doctors, charities, volunteers, journalists, patients and anybody who raises awareness about the disease have in common? The intrinsic need to help people with Endometriosis avoid as much pain as they can.
Governments and institutions globally have a lot to do to recognise this disease, and scientific research is imperative to understand, treat and diagnose the disease correctly. Raising awareness is a fundamental action that can change somebody’s life. Endometriosis UK provides support to people who have Endometriosis, in as many ways as they possibly can. But this cause needs as much attention as it can get, which will also serve as a precedent for countless more invisible illnesses. The more we raise our voices, the more people will be able to give a name to their pain. A name which will mark the starting point of a life-long journey.
Endometriosis-uk.org. 2022. Endometriosis UK | the leading UK charity that supports women living with endometriosis. [online] Available at: https://www.endometriosis-uk.org