Nikky Box is from London and was diagnosed with Endometriosis in January 2020 via private health care. She had an internal examination and an MRI scan and both revealed severe stage 4 endometriosis. Nikky was also diagnosed with a Chronic UTI in 2018. It took her a long 14 years for a diagnosis. According to endometriosis.org, 1 in 10 women suffer from endometriosis.
“I distract myself with my art. I am so lucky to have built up my own small business from scratch to help manage my illness better. When I started my business, I had no idea I had endometriosis but I knew something wasn’t right. I was passing out at work a lot, in excruciating pain, and something needed to change. It was the best move I ever made! Now I have learned to not work so hard (although I want to) and to have a self-care routine. I journal, use tarot cards, nap when I need to, and have many long hot Epsom salt baths. The biggest thing that helped me was also changing my diet, which I actually did many years before my diagnosis. I worked out that my triggers are dairy, soy, sugar and gluten.”
Allow yourself to grieve. It’s so important to go through the motions. I personally do well when I ignore things and carry on as normal as possible until I can no longer ignore them! But when I was diagnosed, I chose to speak to everyone about it and educate as many people as possible. I am quite the advocate now days! Please don’t be afraid to talk to people, even if they don’t understand and judge you. That’s on them, not you.”
What is your main struggle with your illness?
Endometriosis impacts my everyday life. I am constantly fatigued and struggle to work long hours like I used to without being in bed all day the next day. If I go out anywhere, I worry about where the nearest toilet is, what I eat out and it takes all of my energy which can lead to multiple flare days. I feel like I have to stay home to be safe.
What is a common misconception related to your illness?
Endometriosis is often perceived as just bad periods. It is so much more than that and I wish people understood how dangerous the condition is. Endometriosis can grow anywhere in the body apart from the spleen, cause organs to stick together with adhesions and severely damage them.
How is your mental health affected and how do you manage that?
I have always had pretty good mental health considering! I have always suffered with anxiety but I try not to let it take hold of my life. I have learned to live in the present moment and be grateful for what I do have.
What is a scary/difficult moment in your life and what was the best? (In regards to your condition)
I am due surgery very soon and I am really scared of that. It’ll be a long surgery and recovery so not knowing what the surgeon will find and how long it’ll take me to recover always plays on my mind! The best I would say were things I have managed to achieve despite my illness. So running my business and once I took a holiday to Spain where I walked a part of the Camino. My family and I walked over 100 miles in 5 days! I was super proud of myself and even more so now I know what I am facing.
Give us is a fun and interesting blurb about you (not related to your illness):
I’m a 32 year old crazy cat lady who loves to create! You’ll always find me in my cosy little bedroom studio, drawing away with a cat by my side! Ohh, also some crystals too! I’m giving the whole spiritual thing a go, as why not?!