My Lymphoedema Journey: How It All Began

My Lymphoedema Journey: How It All Began

As this is my first post, I want to share how my journey with lymphoedema first began.

In February 2017, I was training at a performing arts college in Liverpool, working toward a Diploma in Dance. Alongside my studies, I was rehearsing for various stage shows with different companies and living a healthy, active lifestyle. One day during a dance class, I noticed sudden and unusual swelling in a few inches of my right ankle. I was immediately signed off from dancing and referred to my local GP.

With little explanation as to where the extra 0.5 cm of fluid had come from, I was referred to the vascular clinic at my local hospital. There, I underwent a Deep Vein Thrombosis (DVT) scan to rule out blood clots, along with various blood tests. Thankfully, all tests came back clear, but the swelling, now about five inches along my lower leg remained unexplained.

The next step was an MRI scan of my pelvis to check for structural blockages or anything that might be restricting the flow of fluid in and out of my leg. After waiting six months for the scan and results, no abnormalities were found. Finally, in December 2018, nearly two years after my symptoms began, I was diagnosed with lymphoedema by a vascular specialist.

By this time, the swelling had increased to around 4–5 cm in size and had started to spread further up toward my thigh. I was fitted with a Class 1 off-the-shelf compression stocking to be worn for at least 10 hours a day. At first, I struggled with this. Reluctant to wear the stocking, unsure how to talk about my condition, and overwhelmed by extreme images I had seen online.

A turning point came when I was accepted into university. I began to feel more motivated to manage my condition and prevent it from progressing. I realised this was a lifelong journey and it was up to me to take control of it. By then, my right leg was approximately 10–12 cm larger in circumference than my left. I was moved into a Class 2 compression garment, which I slowly integrated into my daily routine, wearing it during both everyday activities and sport. Since the people I met at university only knew me with my condition, it became easier to accept and embrace it as part of who I am.

Unfortunately, I found that support from the NHS was limited. It became clear that lymphoedema is severely underfunded and under-researched in the UK. If I wanted to take back control of my health, I had to become my own advocate. I immersed myself in researching self-management techniques from trusted medical sources. I also began seeing a private specialist in North Wales, where I paid for four sessions of Manual Lymphatic Drainage (MLD) therapy.

I committed to wearing my compression stocking for at least 12 hours a day, elevating my leg during sleep using cushions under my mattress and massaging my leg with a simple emollient after showers to keep the skin healthy. Most importantly, I worked on maintaining a positive mental attitude. I focused on acceptance, resilience, and the long-term wellbeing of my body and mind.

Eventually, after persistent follow-ups with my GP and local hospital, I was finally referred to Clatterbridge Lymphoedema Clinic. There, I was fitted with made-to-measure toe to thigh Class 3 compression garments. Routine tests and ultrasounds continued to show no underlying vascular issues and I was officially discharged from the vascular department.

Looking Forward

While this diagnosis was a challenging detour from the path I had envisioned, it’s also shaped a deeper understanding of my body and my strength. I continue to learn and adapt and I remained hopeful for increased awareness, research, and resources for people living with lymphoedema.

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