I always knew there was something different about my legs; it was only when both my hips kept snapping that I knew for sure something was not right.

Hello to whoever is reading this, my name is Elise and I am 20 years old. I have had a long, difficult journey these past few years – I feel like I have aged a lot! Life has not always been difficult for me; I had a great fun-filled 12 years before everything turned upside down. From the age of 12 onwards I have been living in chronic pain, and this has brought a multitude of challenges, but has also strengthened my Christian faith, and I fully rely on God’s strength to get me through each day.
My pain started in my shoulder, believe it or not, and progressed and spread to every joint, but the most severe pain was in my hips, knees, ankles, and lower back. I always knew there was something different about my legs; I could never get my ankles to touch, my kneecaps were turned outwards and I could not sit on my knees, but it was only when both my hips kept snapping that I knew for sure something was not right.
It first started that one of my hips would snap occasionally but it would be painless, but it then progressed to the point where both my hips were popping every single step I took or any time I put any weight through my leg, or even just standing still. The snapping made walking very painful, and my back and legs felt like they were being rubbed raw, and the pain from the irritation was intense and got worse with every step. As well as being painful, it was embarrassing too; you could physically see the snap through my clothes and my skin shuddering, you could hear the snapping and you could feel the vibration from the snap through the floor. Some people could not walk beside me because it freaked them out, I have had instances of people following me down corridors listening to it, and I have had so many people ask what the noise was – and I was too embarrassed to say it was my hips. Even with my very unnatural walking, I was still told by a physio that my walking was normal, but I had never seen anyone else walk like that!
I have had so many X-rays, MRI’s and CT scans the past few years; I am surprised I am not radioactive. I saw so many different doctors and specialists, but my pain was mainly put down to hypermobility, potentially hip bursitis and I was diagnosed with snapping hip syndrome, and I was to take painkillers/muscle relaxers and I was referred to physiotherapy. But unfortunately, physiotherapy only made the pain and snapping worse; I had tried almost everything, I was attending weekly Pilates classes, doing more exercise, ice packs/heat packs, painkillers, physio, I even tried acupuncture (I personally do not recommend) but I was getting nowhere.
It was only whenever the pain in my lower back worsened and I was starting to get numbness down my legs that my GP referred me to a back specialist. The back specialist diagnosed me with mild scoliosis but knew that my pain was not coming from my back, and he said he would refer me to a specialist hip surgeon. Fast forward a few months and I had my first appointment with my hip surgeon, who sent me for a CT scan from the top of my pelvis to the tips of my toes. However, at this point the pandemic had hit so I did not find out the results for months, until one day our house phone rang and I knew it was not good news because I will never forget the look on my dad’s face. Little did I know that, that day I was diagnosed with femoral retroversion over the phone and was told that I needed a femoral derotational osteotomy surgery on each leg to correct the position of my femurs. My left femur was only sitting at 0.7 degrees and my right femur at -2.3 degrees when they should have been sitting between 15-20 degrees. I was shocked; I was so relieved to have an answer after living in pain for so long, everything finally added up, but I was absolutely terrified at the prospect of going through surgery, especially a surgery where your femur is going to be broken. Due to the pandemic, I had no idea when my surgery was going to happen, so I found the not knowing quite tortuous mentally.
I had to wait 11 months from diagnosis to my first surgery, my surgery day for my left hip was 28th April 2021, the day before my mum’s birthday! I was absolutely petrified, I still feel nauseous to this day driving to the hospital, but I trusted God that He would keep me safe, and He did. Hours later, I woke up in the recovery room, completely disoriented and that is when that horrible aching bone pain hit me. My leg was a dead weight, I could barely move and no painkillers were touching me, it took a few days to get my pain under control. I was moved to the hospital’s enhanced recovery unit where I stayed for a few days then was moved to the normal ward. It was in the enhanced recovery unit where I had to relearn how to sit up in bed, and even just that single movement was enough to drain my energy for the day. The next few days they got me to stand up supported on a forearm Zimmer frame and I eventually started to walk 50% weight bearing using the Zimmer frame and then finally progressed to crutches. They only let me home when I could safely go up and down steps on my crutches, so I got home after 6 days. The bag of medications I had to take home was bigger than the bag I brought with me to the hospital. I did really struggle at home, but my family was incredible at supporting me. I had zero independence and my family had to get a shower seat, and a frame to help me get up from sitting. I had lost a lot of weight from the nausea from all the medications and the pain but had the odd very strange food craving.
Within a few weeks, I managed to walk in the house unaided and a few months later almost completely off the crutches. I persevered through all the physio exercises every day and it paid off; I could finally bend my knee and my leg was getting stronger albeit still very painful. My femur finally healed in 5 months and I was getting myself ready for my next osteotomy. Unfortunately, 3 months after my first surgery I ended up having an emergency surgery to remove an ovarian cyst that I did not know that I had until it burst! That stalled my recovery for a few weeks.
7 months after my first surgery, I was in hospital again on the 24th November 2021 for my second femoral osteotomy on my right hip. My snapping hips would finally be gone for good! I was given a nerve block in my back beforehand to try and save me some pain after surgery, but unfortunately this did not make a difference for me, I still woke up hours later in a lot of pain. This surgery took longer than the previous one, as they had to do a lot of soft tissue work as they were so damaged from the years of snapping and irritation. I recovered from the general anaesthetic better this time but I found the recovery a lot harder. They had me up walking on the Zimmer frame again, then 2 crutches with a physio on each arm holding me up, then finally as confident as I could be on 2 crutches and I got home after 7 days. That hospital stay was a bit crazy, I had to be transferred by ambulance to another hospital halfway through my stay because I became quite ill. I was so glad when I was allowed to go home; I had my school formal the day after I got home, and I had chosen my dress months in advance and I was determined to make it there. I made it there after only just getting out of the hospital the night before, and my dress fitted me which amazed me because my leg was so swollen! I was still on very strong painkillers so I do not remember any of it but I have the pictures to prove I was there.
I found the recovery process from my second hip surgery much more challenging as I was still only a few months after my first. I had a lot of bumps in the road from the second surgery but recovery is never a straight line. I was on crutches for a lot longer and I managed to develop a functional gait disorder a few months after this surgery but thankfully this has now resolved. I still get pain in my right hip but it is nowhere near pre-surgery levels which is amazing, however, I still have a lot of pain in my left hip at pre-surgery levels if not more, it went away for months after the surgery but it returned. I received a diagnosis of hypermobile Ehlers-Danlos Syndrome, which could explain why I still have pain in my hips. I would have loved to have been completely healed after going through such major surgeries and lengthy recoveries, but my hips no longer snap to the same extent, and I will be forever grateful to the incredible surgeons that performed my surgeries for that.

Even though I am still in pain, I managed to return to school after 2 years of missing it; and I was finally able to leave with A-Levels. I have a rod and 3 screws in each femur, so I feel the cold quite strongly in my thighs, which is quite a strange feeling! On top of this, I have many scars on my hips and knees; I have a 6 inch scar the shape of a lightning bolt on my left hip and an 8-inch scar that looks like a zip on my right hip. I did find it hard initially adjusting to my scars but I am learning to love them and now every time I look at them, I can see how God brought me through my lowest point.
Through what felt like a horrible situation and collecting new diagnoses of hEDS and FND, God has shown me that I am a much stronger and braver person than I think I am and my situation has brought me closer than ever to Him. God has been able to use my situation to help others and I will keep following God’s plan for my life, because I know it is good.