Patient Stories

Josie

Hey, I’m Josie and I have bilateral hip dysplasia.

All of my childhood I grew up with ‘growing pains’ … Sound familiar? No one in my family has any hip issues so no one stopped to think it would be anything other than growing pains. Why would they? The paediatrician checked my hips when I was born and there’s no way of telling now, but they either missed it then, or I have developmental hip dysplasia where they just didn’t form correctly whilst I was growing.
For me, growing up with these ‘growing pains’ meant carrying on with activities despite the pain. Learning to put it to the back of my mind otherwise life would’ve just stopped. From a young age I had to learn my pain limits and what I could manage physically.
I stopped growing in height when I hit 11 years old however the pains didn’t stop. My Mum was convinced I still had another growth spurt left so the ‘growing pains’ explanation continued. I am 5ft 3″. I never had that growth spurt haha.

When I hit 15 years old, the pain was just getting too much. I remember vividly the time I was walking home from seeing some friends and my legs just stopped moving. The pain became too much, and my legs just stopped moving. It was that day, I decided I HAD to take myself to see someone about this pain!
The Dr I saw, referred me to my local Hospital who unfortunately were clueless about what to look for let alone how to help me. They gave me an X-Ray, showed me the results and told me I was fine. A little while passed and I received a letter in the post telling me that they had referred me to a specialist hospital where there was a consultant who knew a lot about hip problems and could possibly help me. Finally, I felt like I was being taken seriously!!
I went to see this consultant who did tests such as an arthroscopy which I had to be put to sleep for and I had more X-Rays before they finally diagnosed me with Bilateral Hip Dysplasia. The physician also diagnosed me with Hypermobility, which often comes hand in hand with Hip Dysplasia.
After being diagnosed, I was absolutely crushed if I’m honest. I think I wanted to be told it was in my head and I would ’grow out of it’. Instead I was told I had a lifetime of hip problems and operations to look forward to. I was offered an operation called a Periacetabular Osteotomy (PAO). The operation meant having my pelvis broken in 3 places and screwed together. I was told the waiting list was very long which I was relieved to hear so I agreed to the operation, went home and I went into denial. Many long painful years went by while I tried to carry on my life like I was fine before I realised, I REALLY needed help now. The pain had worsened, and I was unable to do half of the activities I had been doing without a clunk or a pop and agonising pain. I called the hospital and asked where I was on the waiting list, only to discover I was never actually placed on it.
Soon after discovering I wasn’t on the list, I discovered I was pregnant, so my hip plans had to wait!
5 years later, I had my Right PAO on the 5th Oct 2019. My daughter was 4.5 years old when I had my first surgery. A year later had my Left PAO done on the 24th Oct 2019. Both of these surgeries were with a physician who sees adult patients, as my previous physician only deals with the pediatric patients, which I was when I was diagnosed.

As Hip Dysplasia often happens in the first-born daughter (Which it did in my case), I was naturally concerned for my daughters’ hips. I pushed for 4 long years to get her checked and I am pleased to say that her hips are growing perfectly so far! She’s now 5 and a half and showing no signs of hip pain as of yet.
I was diagnosed with Hip Dysplasia when I was 15 and I wasn’t treated for it until I was 24.
I’ve faced many challenges and struggles while living with Hip Dysplasia and Hypermobility. Both before and after surgery and both physically and emotionally.
I’ve faced many challenges while living with Hip Dysplasia, both before and after surgery and both physically and mentally.
Physically, I’ve struggled with sleeping, walking, exercising, physio, nerve damage, learning to walk again, driving, even sex sometimes. Emotionally, I’ve struggled with being misunderstood. No one can relate to something they don’t understand. Having to leave my job because I was a sports coach in a primary school – It was too physically demanding in the end, which left me with the repercussions of money issues which always (In my case at least) leads to poor mental health. I also lost that socialising aspect of my work along with it. Every part of Hip Dysplasia, even the ones not mentioned, can leave you feeling isolated and anxious.
After my first surgery, I had to find ways to get myself out of the hole I felt I was living in. I had to keep reminding myself to slow down and be kinder to myself. I wanted so much to be better that I was rushing and pushing my body too far and too fast.
My anxiety to leave my front door became overwhelming so when I started driving, I decided to get myself into a gym instead, where I found myself socialising with the lovely staff and feeling much more motivated to do my physio. I also had the support of the staff when I felt clueless.
I started volunteering at my local church. A charity that used to run an art club for vulnerable adults had their funding cut so the church took it over and needed volunteers to help supervise and keep it going. I met some wonderful people there, volunteers AND the local people who went.
Before my surgery, I found a Facebook page that had thousands of people who live in the UK and have Hip Dysplasia. A lot of them have experienced a PAO or have one pending. It was the best thing to happen to me regarding my hips, in such a long time. I finally had a community of people who knew EXACTLY how I felt. It was such a relief! I noticed that a few people had also made Instagram accounts for their Hip Dysplasia journeys, so I decided to do the same.

(@josies_hip_dysplasia_journey) I’ve had it over a year now and I have some wonderful followers that I like to call ‘Cheerleaders’ because they are amazing at encouraging you and supporting you. I often see them commenting on other accounts too with the same amount of love and support; all while going through their own journeys too. It’s a wonderful place to be.

If you tell someone you have a headache, they know how to help you and they can relate to your pain. If you tell someone you have cancer, they may not be able to relate to your pain, but there is enough information out in the world now, for people to have a good understanding of how to help you ease your pain or at least keep you comfortable. If you tell someone you have Hip Dysplasia, they ask you what it is, listen in curiosity and move on. Only people who suffer with Hip Dysplasia, understand people with Hip Dysplasia. I hope that one day this changes, but most of all, I hope it can eventually stop being missed in infants so can be prevented in adults. Hip Dysplasia is more common than people know, and it deserves to be better known about.