What was the beginning of your endometriosis journey like before you knew what was happening?
I’ve struggled with painful periods since I was 11 years old, when they first started. It was confusing, isolating and incredibly difficult because I couldn’t understand why I was experiencing so much pain while everyone else seemed to carry on with life as normal. More than anything, it was emotionally draining because I felt like something was wrong with me but I had no answers
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed at 19 after being dismissed by six different doctors before finally finding a gynaecologist who listened to me and believed my symptoms. Sadly, most of the doctors who dismissed me were women. I was also dismissed at school, which was an all girls school where many of my teachers were women. During my matric trial exams, the pain became so severe that I couldn’t sit anymore. Instead of being supported, I was told it was just stress and all in my head. I was removed from my trial exams because I wasn’t allowed to write in the concession room, which delayed my matric year much longer than it should have. Looking back, those experiences made an already difficult journey even more heartbreaking
What did it feel like to finally have a name for what you were experiencing?
It was an overwhelming sense of relief. For the first time, I had an explanation for years of pain and discomfort. It gave me hope that people would finally believe me because my pain had a diagnosis instead of being dismissed as something I was “imagining.” I still remember waking up after my laparoscopy and the very first thing I asked was whether they had found endometriosis. When they told me they had, I felt so relieved that I drifted back to sleep knowing I finally had an answer
How does endometriosis show up in your body and daily life?
Endometriosis affects almost every part of my daily life. I experience frequent flare ups that make it difficult to function normally. Many days are spent in bed because of the pain and the medication I need to manage it. It has made even simple everyday tasks challenging and has made maintaining a regular job incredibly difficult
How would you describe the pain or physical challenges of endometriosis?
The hardest part is feeling like you’ve lost control of your own body. The pain can be overwhelming and knowing there’s often very little you can do in that moment is incredibly frustrating. It’s physically exhausting and emotionally draining
Do you have “good days,” and if so, what do they look like?
Good days are quite rare but when I have one, I usually have a bit more energy, my pain is more manageable and mentally I feel more like myself again. I treasure those days because they remind me what life can feel like
How has endometriosis affected your education, work, routines, or ability to make plans?
Endometriosis has affected every area of my life. My matric year was incredibly difficult because my pain was dismissed as exam stress and being removed from my trial exams delayed my schooling. Working in a traditional workplace has also been challenging because flare ups are unpredictable and not everyone understands the condition. Even standing, sitting or exercising for long periods can become painful. Making plans is stressful because I’m always worried I’ll have to cancel due to a flare up, and I never want people to think I’m unreliable
Has endometriosis had an impact on your finances or access to care?
Absolutely. The costs quickly add up between specialist appointments, co payments, medication, scans, surgery and hospital visits. Living with a chronic illness places a significant financial burden on my family
What has your experience been like with doctors, specialists, and navigating the healthcare system?
Unfortunately, I feel like the healthcare system failed me for many years. By the time I was finally diagnosed, my endometriosis had already progressed to Stage IV at just 19 years old. I often wonder how different things could have been if someone had listened sooner. Earlier diagnosis may have prevented some of the pain and suffering I’ve experienced
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I had a diagnostic laparoscopy, which confirmed my endometriosis, and the visible lesions and nodules were removed during surgery. I’m currently on hormonal treatment to help manage the pain and slow the progression of the disease. I’ve also made lifestyle changes by avoiding certain foods and modifying my exercise routine where necessary to help reduce flare ups
What has it been like to live with a condition that often isn’t visible to others?
It’s incredibly difficult because people can’t always see what you’re going through. Many assume you’re exaggerating or making excuses when you need to cancel plans or rest. The reality is that we’re doing everything we can just to get through each day while living with pain that isn’t visible to anyone else
Have there been times when you felt dismissed or not believed about what you were going through?
Many times and unfortunately it still happens today. I’ve been dismissed since I was 11 years old. Being doubted and made to question your own experiences can sometimes be just as painful as the condition itself
What has the emotional or mental side of living with endometriosis been like for you?
Living with endometriosis has taken a huge emotional toll on me. It feels like so many opportunities and experiences have been taken away because of this disease. I often grieve the person I might have been and the life I imagined if I hadn’t been living with chronic pain. That’s a side of endometriosis people don’t often talk about
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
It’s changed the way I see my body. Instead of feeling like my body is working with me, it often feels like it’s working against me. Over time, I’ve had to learn to be more patient with myself and show myself compassion even on the days when I feel frustrated by everything my body can’t do
How has endometriosis affected your family relationships, friendships, or dating life?
Friendships have been difficult because I’ve had to cancel plans so often and not everyone understands why. At the same time, I’ve been incredibly blessed with an amazing support system. My parents have gone above and beyond to make sure I receive the treatment and medication I need, and my fiancé has shown me what unconditional love and support look like. He encourages me, helps me make healthier choices and reminds me every day that I’m loved, especially on the days when I struggle to believe that myself
Has endometriosis had an impact on intimacy or your sexual life?
I’m waiting until marriage so this isn’t something I’ve personally experienced yet
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
Like many women with endometriosis, I do worry about whether I’ll be able to have children one day. It’s something that’s always in the back of my mind and there are moments when that uncertainty feels overwhelming. But through it all, I continue to trust Jesus. He has carried me through every part of this journey and I’ll keep trusting Him with whatever my future holds
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Having supportive people around me has made the biggest difference. Living with a chronic illness can be incredibly lonely but having people who believe me, pray with me and walk alongside me through the difficult days has made the burden so much lighter
Do you feel supported in your journey? Who or what has helped you most?
My parents and my fiancé have been my greatest support throughout this journey. My parents have always made sure I receive the medical care, treatment and medication I need, while my fiancé has been my biggest emotional support. He encourages me, helps me with my diet and lifestyle and constantly reminds me that I’m loved, especially on the days when I struggle to believe it myself. I truly don’t know where I’d be without them
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I’m part of several online support groups and I also have a close friend who lives with endometriosis. Having someone who truly understands what you’re going through has been incredibly comforting. We encourage one another, share advice and remind each other that we’re not facing this journey alone
How has your relationship with endometriosis changed over time?
Over time, I’ve slowly started accepting that endometriosis is part of my life. It’s not an easy journey and there are still difficult days but I’m learning to adapt. I’m trying to focus on making the most of the good days and living the best life I can despite the challenges
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I believe there’s still a long way to go. Too many women, especially young girls, are dismissed or told that severe pain is normal. We need greater awareness, earlier diagnoses and healthcare professionals who genuinely listen to their patients instead of minimising their symptoms. No one should have to fight so hard just to be believed
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I don’t think endometriosis is talked about nearly enough. When it is, it’s often dismissed as “just bad period pain” when in reality it’s a complex, chronic disease that can affect almost every aspect of a person’s life. I’d love to see more education, more awareness and more honest conversations so people truly understand what living with endometriosis looks like
What would you like more people to understand about endometriosis?
I want people to understand that endometriosis is so much more than painful periods. It’s a chronic disease that can impact your education, career, relationships, mental health and everyday life. Just because someone looks okay on the outside doesn’t mean they aren’t fighting an invisible battle every single day
When you think about the future, what fears, concerns, or hopes do you have?
Like many women living with endometriosis, I worry about my fertility, how my condition might progress and whether chronic pain will always be part of my life. At the same time, I choose to hold onto hope. I hope for better treatments, earlier diagnoses, greater awareness and a future where women don’t have to spend years fighting to be believed. Most of all, I hope to continue building a full and meaningful life, knowing that endometriosis is part of my story but not the whole story
Is there anything else you’d like to share?
I’d like to encourage anyone who’s been struggling with symptoms not to give up if they’ve been dismissed. Keep advocating for yourself and don’t stop searching until you find a healthcare professional who listens. You know your body better than anyone else and your pain is real. You deserve to be heard, believed and treated with compassion. And if you’re living with endometriosis, I hope you know that you’re not alone. There is hope, even on the hardest days 🙂