Iliac artery endofibrosis: The lemon drizzle on top

I still can’t believe I am writing about this as am yet to get my head around it. It has been a while since I last blogged as I don’t like to use it as a means of venting frustration, this post however is helping me with acceptance. After another year of struggles, my diagnosis on Wednesday really was the lemon drizzle on top of a very bitter sugar free lemon cake!

I was diagnosed with Chronic Fatigue in November ’14; generally functioning was a challenge. A lot of my food had to be blended, fun times it was not. I won’t bore you with the details, for the most part they have consciously been repressed. Mitochondrial function tests showed that I was operating at a cellular level of 30%. My little bro still sends me a “make sure you give it 30%” text before races! Within a few months of working with a new Dr. I was improving all the time, at Christmas I was saying to friends it’s almost too good to be true. I don’t know how I would have coped without my parent’s unconditional support.

I had planned to resume my degree in the NY and finish off my final semester at Bath Uni. Fortunately, sufficient brain fog had cleared and mentally I could function again. Cognitively, studying was a struggle but it really helped kick my brain into working again. Having enough energy to be 1.5 dimensional was good for getting back on track. I started racing in April when I was by no means race ready. Tour of the Reservoir in Northumberland was a shock to the system racing in negative conditions and snow. Not many finished and those that did were borderline hypothermic. I was just pleased I finished.

By this point I had been experiencing more and more weird leg sensations in both feet; numbness in both feet, shooting into my calves too. It got worse and worse and my legs felt powerless and weak. Cue Ed Sheeran’s lyrics- when your legs don’t work like they used to before… I gave myself such a hard time for feeling so weak on the bike, attributing the symptoms to the aftermath of chronic fatigue. Maybe I wouldn't make a full recovery or be the same athlete again?? Or is it just in my head?? This internal dialogue plagued me from the moment I woke up in the morning.  You would switch the radio off if it was talking bullshit but I couldn't shut this up.

Winning, a short lived high

I raced on. Occasionally I would have a fluky day; a teaser of how my legs used to feel. Then bam last weekend after winning in Guildford only a few days before, the numbness and loss of feeling became so extreme. That kicked me into seeking out a specialist. After a day of networking and researching I had an appointment booked to see Dr Hinchliffe, a top vascular specialist in London. By this point I suspected I had the dreaded artery problem that cyclists are predisposed to by nature of the repetitive hip flexion. At St Georges in London wheeling my bike into the hospital was a healthy dose of perspective. There are always people worse off than you are, prompts Father Grant’s words of wisdom in my head. I underwent the standard testing protocol: iliac artery ultrasound and blood pressure readings in extremities. Then I got on my bike and rode as hard as I could to bring on the symptoms, this time I welcomed them- come at me! I jumped off my bike onto the bed for the same tests to see the response post exercise. Both legs had a pressure drop off and my artery was narrowed, constricting blood flow. Bilateral iliac artery endofibrosis was confirmed with right leg worse than left.

I left emotionless but maybe felt an inkling of relief; finally I had an answer to why I sucked so much. The only cure is big deal surgery. We decided I would aim to see the season out and retest in November to see what state the artery is in. My flight to the USA for the rest of the season had already been booked for 23^rd July after I had had a few days of my old legs. I walked out the hospital past patients being carted off for surgery and was frankly now terrified. Outside the hospital passing patients on their Zimmer frames smoking in their gowns infuriated me; these people were choosing to constrict their arteries!!

My plan is to take a conservative approach to the next 2 months. See how best I can manage the symptoms. Tweaking my position to reduce hip flexion has been paramount and I still get some relief with acupuncture. I’ll consider my options when I am back from the USA in October: do nothing, quit, change sports (race walking?!) or have surgery. Being an athlete is what I have dreamed about for as long as I can remember, this decision I won’t take lightly. Fear of leading an ‘ordinary life’ has always been a driving force!! I’ll gauge how much bounce I have left in me. Having lived with my kiwi friend Courteney, who endured surgery in both legs, I can’t quite believe it is happening to me too. It is scary the amount of pro’s who’ve had surgery yet it is still such a poorly understood condition.

I am extremely grateful to everyone who has stood by me this year, not to mention my sponsors. If any cyclists/ triathletes with this condition stumble across this blog and have managed to continue without surgery, please get in touch! 

Thanks for reading, ciao for now!  

Ironically I bought this book a few years ago, always helps rekindle some optimism with the help of kittens and puppies...