Copyright evoke
I was diagnosed with endometriosis at the end of 2021, after years of pain that I kept trying to explain away. It took a while to get diagnosed and I had to chase my doctor at that time for answers. Eventually, she called me back and told me that I had endometriosis. Suddenly, everything started to make sense. In February 2022, I had keyhole surgery – a procedure where surgeons make tiny incisions and use a camera and special instruments to find and remove endometriosis tissue. It’s often used to diagnose and treat the disease, but even then, surgery isn’t a cure. Endometriosis is a condition where tissue similar to the lining of the uterus grows outside of it – on organs where it doesn’t belong. This causes inflammation, internal scarring, and pain that rarely takes a day off. We endometriosis sufferers are well used to the flare-ups, which are basically when down there gets inflamed, and this can cause abdominal cramping and severe pain. It affects every part of life, and still, many people reduce it to “just bad periods.” If only it were that simple. One of the hardest parts of living with endometriosis isn’t the pain itself – it’s the guilt that follows. I call it endometriosis guilt. I’m a productive person. I like showing up for people. I like being someone others can rely on. But endometriosis drags me into days where getting out of bed feels like climbing a mountain. I’ve had to cancel plans last minute. I’ve called in sick to work more times than I can count. I’ve laid curled in bed for hours while the world continued spinning around me. It’s not my friends' fault, but my friends list is slowly but surely reducing as the years go on. I talked before about losing some friends after having a baby, but I can’t blame it solely on that. I haven’t been the most reliable person, but I’m trying not to be too hard on myself, as these things can’t be helped, and you have to put your health first, above anything else. It can be a really lonely time, and because I don’t have a huge circle of friends, there are only a handful of people who ‘really get it’ and don’t put pressure on me and understand how I’m feeling. I’ve nearly fainted on public transport, in the bathroom, and have gotten dizzy doing simple tasks around the house. Every single time, I feel like a disappointment. It’s not just the periods – though the heavy bleeding and abdominal cramping can be brutal. It’s the migraines, the bloating that makes me look six months pregnant, the stabbing pain around my cervix that takes my breath away. It’s the hyperpigmentation on my ears and cheeks, the night sweats, the restless sleep, the twinges in my hips and legs, the mental fog that makes simple tasks feel impossible. There are days when fatigue clouds everything. When I feel too tired to think, let alone be the person I expect myself to be. And this brain fog can make me really quite confused. Don’t get me started on the endo migraines, which leave me feeling nauseous, dehydrated, and with the biggest pain in my head I have ever felt. No hangover can compare to this feeling! Anything sugary temporarily helps but when the pain is unbearable, I succumb to my prescribed migraine tablets that are given out sparingly. My husband also got me a Migraine Relief Cap, which works wonders for me. You put this over your face, so it covers your eyes and head. It’s reusable and cooling, and also perfect for avoiding harsh light. The invisible loneliness Endometriosis is incredibly lonely – even when surrounded by care. I suspect other illnesses feel similar, lonely, sad, isolating, and depressing. People don’t always see the pain because it hides behind a smile, behind makeup, behind “I’m fine.” Behind the humour I use day in and day out to distract myself, and others around me, that this is who I am. This is my life. And I do take the ‘if you can’t laugh about it’ approach, because if I didn’t laugh or make these jokes, I’d be in a much worse position. Sometimes I feel like I’m living two lives: the one people see and the one that hurts beneath the surface. And when I feel like I’m letting others down, it weighs on my mind, and then the guilt and overthinking kicks in. Motherhood and the ache of guilt My son, Alex, is nearly two – a whirlwind of joy and energy. He deserves a mum who can keep up with his curious little world. But some days, I just can’t. Some days, the pain wins. The fatigue steals the spark from my body. And I sit there, watching him play from the sofa, wishing I could be on the floor with him, building towers or chasing him around the room. His innocent eyes, looking at me, longing for me to play with him and pick him up and smother him with cuddles and kisses. Instead, I’m sitting on the couch, energyless and close to tears at the fact that I can’t do more in that moment. Those are the moments when the guilt hurts the most. When I feel like my own body is stealing time – time I’ll never get back. Learning not to apologise for being unwell If you live with endometriosis, you’ll know this guilt. It creeps in every time you have to say “no,” every time your body demands a break that your mind refuses to accept. But here’s what I’m learning – slowly, imperfectly: I am not unreliable. I am surviving something relentless. I am not disappointing. I am doing my best with a body that doesn’t always cooperate. I am not weak. I am strong enough to keep going, even when it hurts. Endometriosis is debilitating. It is exhausting. It is real. And none of us should have to justify our symptoms, our cancelled plans, or our need for rest. The truth I wish I believed every day Illness does not make me less worthy. Needing rest does not make me a burden. Struggling does not make me a disappointment. Endometriosis has taken a lot from me, but it has also taught me that strength doesn’t always look like pushing through. Sometimes strength looks like listening to your body, asking for help, and allowing yourself to pause. On the hardest days, I remind myself that I’m still enough. Even in bed. Even in pain. Even when guilt creeps in. And if you’re reading this and living through the same struggle, please hear this: You are not alone. You are not failing. You are fighting, and that is more than enough.
