Endometriosis: the silent suffering of millions

Photo of young women by Polina Zimmerman at Pexels

Kristen Bratonja shares her personal struggle and the urgent need for change

Endometriosis is a chronic, debilitating disease. In a recent report, Endometriosis UK highlighted that the condition affects 1 in 10 women and those assigned female at birth, significantly impacting both physical and mental health. Despite the staggering number of people it affects, it remains poorly understood.

As a young woman with endometriosis, or endo, I want to take this opportunity to add my voice to the others that have been sharing their stories, raising awareness and presenting accurate information. Unfortunately, misinformation and ignorance about endometriosis are the norm instead of the exception and I hope we can change that.

My struggles began at 13 when I started experiencing intense period pain so severe that I would end up sweating, shaking and screaming on the floor, if I didn’t take painkillers in time. But like many others, doctors told me it was ‘normal’ and that I just had to ‘deal with it’. Over time, the pain worsened, causing me to pass out, with the bleeding stretching on for weeks. That’s when I knew something was seriously wrong. It took months of doctor visits, trips to A&E, and endless tests before I was finally diagnosed. Then began my two-year ordeal of finding the right cocktail of medications to manage my pain.

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the womb, most commonly on the ovaries, fallopian tubes, bowel and bladder. In rare cases, it can even spread as far as the lungs. This tissue behaves like the uterine lining, shedding with each menstrual cycle, causing internal bleeding and inflammation. It can be very aggressive, building up scar tissue and cysts and even potentially leading to organs becoming fused together. Although the pain itself was excruciating, often leaving me curled up in agony on the sofa, it also inflicted a mental toll, impacting my relationships, leaving me isolated.

As the pain became constant, I found myself slipping into depression. The pain, which had always been bad, now felt like a permanent part of my life. Each flare-up would take me deeper into exhaustion, frustration and a sense of hopelessness. Some days, it felt like I was fighting a battle no one else could see. I could barely explain the emotional strain to my loved ones because it was hard for them to understand why the pain seemed endless. It felt like I was trapped in a life that wasn’t mine anymore and my mind was just as worn out as my body.

Endometriosis is a serious condition, responsible for up to 50% of infertility cases

Millions of women, especially young women, are told that their debilitating pain is either ‘normal’, imagined, or just a cry for attention. I was told I was too young to have endometriosis, a fallacy that many people still believe today. In reality, endometriosis affects women of all ages, including celebrities like Halsey, Susan Sarandon, Whoopi Goldberg, Cyndi Lauper, Dolly Parton, Hillary Clinton, Queen Victoria and even Marilyn Monroe. Monroe is believed to have become addicted to painkillers due to her endometriosis, which ultimately contributed to her death.

Misogynistic attitudes toward women’s health fuel the dismissal of conditions like endometriosis. The Guardian reports, that women with reproductive conditions often face poor care due to ‘medical misogyny’, with many sharing their suffering; ‘I was made to think the pain was all in my head,’ one woman said. Endometriosis is a serious condition that can cause chronic pain, responsible for up to 50% of infertility cases.

Despite the facts provided by Endometriosis UK, that it affects 176 million women worldwide, including around 2 million in the UK, it often goes unnoticed and misdiagnosed. For many young women, like myself, the average wait time for diagnosis is 7.5 years, a fact that speaks volumes about how underfunded and under-researched this disease is. The lack of awareness contributes to the stigma surrounding it, making it harder for women to get the support they need. The myth that intense menstrual pain is just a part of being a woman has been so ingrained in society that many of us believe it ourselves.

Currently, there is no cure for endometriosis and the treatments available are often limited. Standard options like painkillers, hormonal therapies and surgeries such as laparoscopy may provide short-term relief but rarely offer lasting solutions. Excision surgery, one of the most effective treatments, is difficult to access because trained specialists are hard to find and the procedure is expensive. While some NHS trusts offer this treatment, access is often restricted and waiting times can be very long. The fight for proper care can be incredibly frustrating and disheartening.

Connect with support groups who understand your pain. You’re not alone.

The impact of endometriosis goes beyond physical pain. It can affect work, relationships, sex, leisure activities, physical fitness, diet, sleep, and fertility. In my darkest moments, talking about my struggles, sharing my experience and advocating for better care helped me regain a sense of control.

Reaching out to others who truly understood my experiences made all the difference. Organisations like Endometriosis UK, as well as online communities, have been lifelines, offering not just medical advice but emotional support from others living with this disease. Connect with support groups who understand your pain. You’re not alone.

Endometriosis Awareness Month, in March, is an important opportunity for those of us who live with the condition to raise our voices, share our stories and demand more from the healthcare system. It’s a time to educate those around us about the real impacts of endometriosis. The more we speak up, the more we can change the narrative and break down the stigma that still surrounds this disease.

If you’re struggling with endometriosis or know someone who is, please reach out for support. There are plenty of resources available:

• Endometriosis UK support groups: A list of support groups across the UK where you can connect with others living with endometriosis.
• Endo Warriors UK: A community providing support through social media and events, focusing on both general and younger sufferers.
• Endo What?: A documentary that helps raise awareness and educate people about the disease.