This is Caitlin's Story.
I first started experiencing symptoms of endometriosis when I was 16. My periods were excruciating, pain so intense it stopped me from going to school, socialising, or doing anything remotely normal. But every time I spoke about it, I was dismissed. Doctors told me it was “just period pain” and something I’d grow out of. Deep down, I knew something was wrong, but no one seemed to take me seriously.
I started seeking medical help at 16, hoping for answers. But it took six years before I was finally diagnosed. That’s six years of being ignored, six years of pain controlling my life, six years of being passed from doctor to doctor with no real investigation. I didn’t even get my first ultrasound for this pain until I was 21 years old and by then, the damage had already been done.
Being a Black woman made the journey even harder. The racial disparities in healthcare are real, and I had to fight to be heard at every single appointment. I had to learn how to advocate for myself, push for tests, ask the right questions, and refuse to be dismissed. It’s exhausting, but it’s the reality for so many Black women in the healthcare system.
I describe my daily life as Russian roulette—it’s completely unpredictable. Some days, I can push through and get things done. Other days, the pain is so unbearable that even getting out of bed feels impossible. I never know how I’m going to feel, which makes planning anything incredibly difficult.
Not having a diagnosis for so long forced me to leave university and put a pause on my education. The pain was too much to manage alongside my studies, and without knowing what was wrong, I felt like I was constantly falling behind. Now that I have answers, I’m back to pursuing my career, but I’m still figuring out how to balance my studies with this new level of pain. It’s a learning process every day.
I’ve started looking into freezing my eggs to preserve my fertility and give myself a chance to have a family in the future. It’s something I never thought I’d have to consider at this age, and honestly, it’s emotionally overwhelming. The uncertainty of whether I’ll be able to conceive naturally weighs heavily on me, and the whole process is exhausting.
I’m lucky to have a very supportive family and close friends who understand what I go through. That kind of support makes a huge difference. However, when it comes to colleagues and the workplace, it’s a lot tougher. There’s always that underlying anxiety—you want to excel and prove yourself, but when you’re in constant pain, it’s so much harder. I’ve had to learn that constant communication is key in helping people understand my limitations, but it’s still a challenge.
As for how I feel about it all? Some days, I don’t even know how to process it. Having a chronic illness where the baseline of your existence is pain is overwhelming. It’s frustrating to know that this is something I have to manage for the rest of my life. But at the same time, sharing my story has been both therapeutic and empowering. It has connected me with an incredible community of women who understand exactly what I’m going through, and that sense of solidarity makes all the difference.
I discovered Endometriosis UK when I was desperately searching for resources to help me understand what was happening to my body. Their work in raising awareness and pushing for change is so important because no one should have to wait six years for a diagnosis. In 2024, I had the opportunity to volunteer with Endometriosis UK, furthering my commitment to spreading awareness and supporting those who are still fighting to be heard.
Endometriosis has impacted almost every part of my life, but I refuse to let it define me. I’m still figuring things out, still adapting, and still pushing forward—one day at a time.
