Living with Endometriosis and its associated health challenges is something one shouldn’t wish on their worst enemies. 1 out of 10 people assigned female at birth is diagnosed with endometriosis, which equates to around 176 million people worldwide. In India, the number is estimated to be around 25 million. For a condition that’s so widespread, it shockingly takes an average of seven and a half years to diagnose, which shows us there is a clear deficit in understanding it within the medical community as well.
People with Endometriosis commonly have severe pain and infertility. The symptoms are chronic pelvic pain, infertility, chronic fatigue, dysmenorrhea, dyspareunia, dysuria, dyschezia and more. The biggest misconception about Endometriosis is that it’s seen as “just a reproductive disorder”. This could be nothing further from the truth. Endometriosis is a whole-body, multisystem, inflammatory disease and has been found in many areas of the body including the skin, lungs, liver and bowel. Many complications like cardiovascular disease, ovarian, breast, cervical, endometrial cancer, immune disorders and more are related to Endometriosis. Understanding the disease outside of its usual pelvic location is important to develop efficient diagnosis and treatment techniques.
Lack of awareness in society and unintended misdiagnosis of Endometriosis has a substantial negative impact on the physical, mental, sexual and social well-being of affected people. Planning critical points of one’s life around the disease can be so debilitating that the concept of quality of life goes for a toss.
But how do you explain a medical condition to your peers, professors, or your bosses when no one knows or has heard about the condition? How do people empathize and deal with something that they don’t understand?
This is an unfortunate reality for many people suffering from Endometriosis. Many of these are college students and corporate ladder climbers where the stakes are high in terms of growth prospects. They often cannot arrange their lives around the disease. The deadlines are meant to be reached irrespective of a symptom flare-up. Clients, to-do’s, targets and project deadlines wait for no one!
About 50% of people with Endometriosis said they stayed in bed an average of 17.8 bed days per year1. This means missing more days of work resulting in a substantial loss of productivity. People are also hesitant to participate in sports, social events, or even regular activities that everyone seems to do just fine. It leads to severe mental health problems like depression. Relationships get constrained. People quit their jobs. The issue goes towards affecting marriages as well.
Unfortunately, most of the symptoms of Endometriosis show up during critical life stages, from adolescence through childbearing years, when people from their social networks define life goals and start their career-specific education, enter the workforce, establish stable relationships and have children. This is exactly why there is a compelling need for Endometriosis research. More importantly, there’s a need for greater advocacy. We need to understand the condition better.
We have to discuss early detection and intervention when it comes to Endometriosis. Recent studies have pointed out that the symptoms of Endometriosis show up during the adolescent period as well. If we can detect the condition as soon as possible, then we have a chance of providing timely relief. We need to decrease the time between someone that has symptoms until the time they are given a diagnosis and a definitive treatment.
With enough advocacy and weight behind the voices for Endometriosis, a better outcome is definitely achievable. Speak about Endometriosis to your loved ones today!