I am 32 years old, a non-smoker, and generally very active and outdoorsy. I hike a lot and used to swim and go to the gym almost every day. So, possibly like you, I never thought this could happen to me, but my life changed dramatically last summer when I had a DVT/PE.
It all began after a cycling holiday in Normandy. I bumped my bike’s pedal on my right ankle, which caused some pain. Despite the discomfort, I continued exercising, thinking it would help. Back in the UK, I kept going to the gym and swimming. My ankle became purple, a bit swollen, and I noticed a small bump on a vein in my foot. Finding it odd, I went to see my GP.
Long story short, I was initially told not to worry — the pain was said to be muscular and I was advised to rest.
I never experienced shortness of breath, however the pain in my ankle persisted and spread to my right calf, making it difficult to walk. At some point I was using crutches to help me getting to work. I also struggled to sleep as it felt like I had a permanent cramp.
Despite multiple visits to the GP and A&E, where I had blood tests and a Doppler (though they only checked the upper leg), I was repeatedly told it was a muscular issue.
After two weeks on crutches with worsening pain, constant cramps, and increasing fatigue, I became immensely frustrated. Convinced something was seriously wrong, I researched DVT/PE symptoms and went back to A&E, determined to get the right tests.
After much insistence, my D-Dimer levels were finally tested—they were at 5000. A new Doppler revealed blood clots in my calf and upper leg. Despite this, I was initially told to go home with blood thinners.
Worried about potential clots in my lungs due to the month-long undiagnosed DVT, I insisted on a lung check. Despite some resistance, the exam revealed I had bilateral PE. I was immediately seen by a senior consultant, who informed me of the risk of heart failure and the need for 24/7 monitoring in the hospital. It was surreal, but also a relief to finally be taken seriously. The consultant commended me for returning to the hospital and fighting for the tests. However, I shouldn’t have had to fight for it.
It’s now been almost a year since my DVT/PE diagnosis. I discovered I have a genetic mutation (Factor V Leiden) that increases risk, especially when associated with other factors, for example the ankle trauma and the contraceptive pill I was taking (which I immediately stopped). I am being followed by an haematology and respiratory team. I am on blood thinners and, after initially feeling lightheaded, exhausted, and scared, I am now focusing on healing.
The recovery journey is challenging. Physically, I am feeling much better yet I still deal with a swollen, painful leg and occasional fatigue. Psychologically, I struggle with self-doubt, hypervigilance, a loss of trust in the medical system, regret for the delayed diagnosis, and somehow guilt for not insisting on a diagnosis sooner. It can feel isolating, as most people don’t understand the extent of this ‘problem in your leg.’
Being diagnosed with a DVT/PE was a massive setback and threw me off slightly, especially when I felt I was in peak form with many plans ahead. But I am educating myself, learning to be patient in the face of uncertainty, focusing on healing and working to regain my confidence. I am grateful to be alive and feeling better every day.
I am a human rights lawyer and I dedicate most of my time to causes that I genuinely care about, I just never thought I would be my own advocate on this one. By sharing my story, I hope to help others who might be going through the same experience.
