I started experiencing swelling in my left foot in 2019, which I initially thought was a running injury. I then found out I was pregnant! 

I had two leg scans to check for blood clots when I was eight weeks pregnant. My leg continued to progress to whole leg swelling and this got increasingly worse over the course of my pregnancy. Then I was diagnosed with cervical cancer. 

I had to have a hysterectomy in 2020 with lymph node removal due to the unknown cause of my initial leg swelling and I was later diagnosed as left leg primary late onset lymphoedema following referral to St George’s and a lymphoscintigraphy. 

I had to fight for this diagnosis as initially I was referred to my local clinic and just measured for compression with no answers as to why. I felt I needed to understand more and alleviate my anxieties due to the cancer aspect. 

Since then I have regular reviews with Pioneer Eastbourne and wear compression daily and I supplement this with wraps as and when I can. I wear the Mediven Mondi class 3 in black and beige. 

I’m now 37 and a mum of four. I've been living with lymphoedema for the past six years. I try to be as active as possible and live my life as normally as I can. I can be somewhat naive and in denial of the condition [lymphoedema] and it's only when I see it that it hits home how bad it really is. I get extreme paranoia that others are looking and judging but I’m also very keen to raise awareness and show off the compression and be as comfortable as I can, especially when it comes to summer time. 

I find the condition impacts my life in so many ways, both my physical and mental health. I hate feeling different and not ‘normal’. I constantly think 'why me?' and relate the condition to a sink and swim situation. It’s 24 hours a day and I’m never away from it. I don’t want to be taken under by lymphoedema and I am  worried about what the future holds for me and for my children.

I find footwear and clothing the biggest challenge as I can’t wear certain styles that I would normally and feel very isolated and alone with this aspect compared to others.

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My leg feels heavy and tight and it’s a never-ending cycle trying to get the swelling down and not be overtaken by the constant overwhelm of swelling. 

I think real patient representation is so important as people with this condition want to see real lived experience, they want hope and the inner strength to feel less alone and be able to relate to others. I want to empower those with the condition to not hide away but embrace it as best we can and live life as normally as you can when you can! 

This condition takes away a lot of the control we have, so it’s important we take that back as and when we can. Every step is a small win, and these small wins should be celebrated because they are so much harder for us! We should recognise how amazing we are living with this life-long condition! 🩷