Lucy’s Story

Hi There! 

My name is Lucy, I have just turned 35,  I am planning an epic journey to paddle 3070 km from source to sea on the Yukon river and I have Stage 4 endometriosis! So how did I get here?

Well I grew up in a family that loved adventure, in Far North Queensland on the Atherton Tablelands. We were always outdoors, in the rainforest, out at the reef, climbing mountains and swimming in creeks. I had parents who taught me to give anything a go, saying ‘you don’t know if you can do something until you try’ and trying is the most important thing. So from a young age I was always taught that it was better to try and fail, then not try at all. So that means that I have always tried new things. 

I have also struggled with complex health issues from a young age. When I was 10 years old I started having seizures and I was diagnosed with Epilepsy. I was having grand mal and petit mal seizures and I know it was a tough time for me and my family while I got stabilised on medication. Again my parents taught me an important lesson. They didn’t stop us from enjoying the life we had lived so far. They put in measures to keep us safe. Snorkelling with an inflatable raft at hand, supervised swimming in the creeks, and we never stopped hiking or adventuring, we just managed it. I think that’s another reason why I have found ways to keep adventuring. Thankfully for me my seizures stopped when I hit puberty and I have been unmedicated and seizure free since I was 16. 

When I finished school I trained to be an outdoor educator and from 18 I started work as a wilderness guide. I loved it! Time spent in nature helping young people connect with nature, their peers and themselves. To push themselves and understand themselves in new and powerful ways. I truly believe in experiential learning. Throughout this time I always had awful periods. They were heaving, were 8 - 10 days long and I got serious cramps and pain. But I didn’t know better, I thought everyone was dealing with that. So I just managed. I took pain killers, I used hot packs and I sometimes just gritted my teeth. 

As I got older my pain increased. When I was 19 I had a pretty serious bike accident. I narrowed a disc in my lower spine, and had major injuries that meant I was bedridden for a week and on light duties for months. But I was focused on getting back to guiding, so I did my physical therapy and worked hard at building my strength and mobility. In the following years my pelvic pain and back pain grew worse. I assumed that it was as a result of my injury, and kept seeing physios and doing yoga and working hard at my strength. Though my pain didn’t decrease, I am still sure that the routines I was building helped me to continue doing what I loved. 

I changed careers, and started working in climate and conservation not-for-profits. I also started to prepare for my first big adventure - Paddling 2042km through the Inside Passage in Alaska and Canada. A year out from the expedition my doctor told me I was severely anaemic and that she suspected that it was due to my heavy periods. She encouraged me to see a specialist gynaecologist and seek a solution. Especially if I wanted to do my big adventure. I had a pelvic ultrasound and I was told I definitely didn’t have endometriosis. I thought ‘I don’t know what that is, but if I don’t have it, then I don’t need to know!’. I was put on tranexamic acid to reduce the heaviness of my periods. So I took them and went off on my big paddle. The tranexamic acid did little to help and throughout the paddling trip I had 2 week periods that were heavy and an incredible challenge to manage in a wilderness setting. But my paddling partner understood that my periods sucked, so we made it work. We rested when I needed to and looked after each other. 

On returning I again sought more answers and was encouraged to try a Mirena. I bled for three months straight, but it was lighter and every time I went for a blood test, my iron was improving, so I stuck at it. After a while it settled in and for a number of years the Mirena was great. I was still having 10-15 day periods, but they were light, manageable and the pain was really reduced. But over time the periods extended to 3 weeks, the pain was every day, and the fatigue was real. Then my twin sister was diagnosed with endometriosis, stage 4. That’s when I sat up and listened, paid attention. After understanding the illness better and knowing that you have an increased chance of endo if you have a sister with endo, I was convinced. 

So I went back to my gynaecologist, I explained my symptoms, my history and my family context and asked about endometriosis. I had scans again and more tests and I was told I didn’t have endo. I kept going back with increasing pain and symptoms as I started having flare ups that would put me out of action. By this stage I was working as the CEO of a climate and environment NGO. A job with high pressure and stress. So I started my own treatment plan based on what I could find out online. Yoga, meditation, not eating nightshades, dairy free, supplements like vitex to manage my PMS and more. I really had all the self care, lifestyle stuff nailed, but my symptoms worsened and my periods were now lasting 3 weeks at a time. 

At this point I started to push for surgery. I wanted to know, but my doctors wouldn’t give me a referral. Stating that while it was likely I did have endometriosis, it wasn’t severe enough to warrant surgery. So I went from GP to GP until I found someone who would listen. In February 2023 I had my surgery, and the surgeon removed large lesions that had adhered my ovaries and my bowel to my pelvic wall. It was a huge relief to have a diagnosis, and to have those lesions successfully removed. 

Following my surgery, my health improved. I was able to build strength, my fatigue reduced, my periods cut back to 2 weeks and my flare ups reduced. I still deal with pain most days and I am now exploring the use of Visanne alongside the Mirena to stop my periods. Having kids isn’t on my current to do list, and so stopping my period feels like a great relief. 

So that’s a bit of my journey. It took me about 8 years ro get from ‘what’s going on’ to diagnoses. A common story for people with endo. But I really think it’s the everyday routine and practice that helps me to be adventurous and live my life. Meditation and yoga is central to managing my chronic pain. My dietary changes have made my life much easier. But ultimately I think at the base of things I still am in pain, I still feel fatigued and it’s hard. So I choose when to rest and take time out when I need to. I tell my friends about my condition, so they can understand why I might bail or need rest. And other days I just do my life with pain, because sometimes it is a choice of doing fun, amazing stuff in pain, or sitting at home feeling sorry for myself in pain. I know that my chronic pain has strong connections to my stress and mental health, sometimes staying at home where I feel more stressed, anxious or sad about my pain, only makes my pain worse. Sometimes getting out and having fun despite the pain can help alleviate it. 

Everyone’s endo is different. We’re all at different places along our journey. Not everyone can manage what I do, our symptoms are all different. But I hope that I can share my story and let people know that endo isn’t a sentence to a life without adventure or fun. There are ways to find joy and adventure. We just have to be kind to ourselves and find the way that adventure works for us.