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.

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  1. Maria Campos says:

    My daughter had total left hip replacement when she was 19 and
    When she was 23 she had a hip reconstruction the pain is much better she can do a lot more.
    She was diagnosed when she was three had 5 surgeries from 3 years to 5 years, then at 12 her left hip gave out. Dr didn’t want to do a hip replacement because she could growth more, which she didn’t grew anymore she is 5.0.

    We are not alone. I say we because my daughter pain is my pain

  2. A.lee says:

    Hi my son was Diagnosed in Jan aged 10.5. He at present isn’t in pain so we are waiting for pain onset and then pao or triple osteotomy depending on age. This is to preserve hip. Replacement he will need one day. It’s hard waiting for pain etc. Hope you recover quickly x

  3. Claire says:

    I’m 32 and have recently been diagnosed with bilateral hip dysplasia. I was lucky that I don’t remember getting any hip pain when I was growing up, the doctors think it’s because I’ve always been sporty and kept my hips strong. I have had pain for years but only occasionally, so didn’t get it checked out! However, in the last 6-8 months the pain has rapidly progressed and I’m now in constant pain and cannot do any of the things I love, hockey, cycling, running, squash or tennis. I can do limited swimming but no kicking! I can only walk for ~30 minutes, which isn’t great when I have beautiful dog to walk (luckily mum helps, before you think my dog is neglected). I find the pain is exhausting and am feeling isolated as very few people understand what I’m going through, and the process to get fixed. I guess it’s because they can’t see the problem….despite me now limping!

    I’m not sure if it’s a good or bad thing but I’m a physio too…now struggling to carry out my clinical duties and have had to cut my hours. I’m waiting to have a PAO on both hips (6 months apart!), which I’m looking forward to (if that’s the right words!) which I know is strange but desperate to get onto the recovery pathway to be able to start living my life again and be 32 rather than feel 60-70!

    How have you found the PAO process? Where did you get it done? If you don’t mind me asking.

    I’m so pleased to have found this page, been a really hard journey so far.

  4. Amanda says:

    Hi everyone

    I too have bi-lateral hip displaysia, I was diagnosed at birth. I can’t remember but I had the plaster cast splint and a few operations when I was young. I was “signed off” from the hospital at a young age and my parents were led to believe that I would be fine from then on.
    I really struggled through school with pe and hated sports day!! I was the one who always came last in the running races but I excelled in sports like rounders and hockey. I just kind of put up with the pain because to me it was “normal”
    Fast forward a few years and I fell pregnant, it wasn’t too bad until the last few months and then the pain kicked in. I had to wear a support belt for the last month or so but that didn’t give much relief, obviously pain killers were a no no :/ I did have a normal delivery though. The pain has always been there gradually getting worse but I didn’t seek medical help because as far as I was concerned I was ok.
    Fast forward again another 15 years when i was 35 year old and I had a fall at work that I had another X-ray on my hips, It was only then I found out how much of a mess they really were.
    I’m now taking opiates for the pain because my consultant told me the longer I could put up with the pain the better, it’s not the best solution but I’m absolutely terrified of having the op because I found out my femur is very thin so there’s a risk of it breaking.
    I would put up a pic of my X-ray but can’t find a link to upload an attachment.

  5. Jacqueline Pittman says:

    Hi there I am 46 and have recently had a total hip replacement on my right side,,, for years I had buttock and low back pain which I always thought was sciatic issues – in 2008 I went to have it checked they couldn’t find anything serious and my dr agreed because I sit at a desk all day its common for sciatic issues to arise. so I learned the stretches for sciatic pain and thought I would just have to live with it… I mean who would even think of hip dysplasia ? I always clean house on Saturday that’s my day to do it all and it got to be where when I was finished my butt and back would be killing me and I would have to ice it and rest,,, 3 almost 4 years ago I woke up one morning and I had a for lack of a better term “catch” in my groin like if you go to get up and its like a sharp pain that will go away in a second,….but this didn’t it caused me to limp ,,,i limped for a good year then decided to go have my back checked went to have an MRI no back issues went to neuro surgeon to have sciatic checked sciatic is fine, finally ended up at a Spinal Ortho who did an x ray told me I have hip arthritis, I asked him how did I get it ? he said we just don’t know why.. he gave me a naproxen prescription and sent me to physical therapy- fast forward 1 year later I had pain every second of every day and night I couldn’t function, I walked like a zombie on the walking dead so I went back to my dr to be referred to a surgeon to get this fixed while at my dr I asked how does someone who is 45 get hip arthritis? she said we may never know , then the ortho I was referred to I asked how did I get hip arthritis? u guessed it , answer was we may never know,,,,i wasn’t thrilled with the lack of enthusiasm this surgeon had… and our hr lady told me of a wonderful surgeon in Louisville KY so I got an appointment for 2 months later, THE FIRST thing he asked me was ” has anyone told you that you have hip dysplasia in both hips ? ” um no but now I knew.. now I had an answer I felt so relieved and mad at the same time, long story short I had hip replacement surgery in May of this year, I am healing and I feel so much better, but my left hip is on a timer and in the next 5-8 years ill have to have it replaced as well- if drs would just have checked my hip in 2008…and if they had Known it was dysplasia then I could have saved a couple years of awful pain

  6. Trish says:

    I was diagnosed with hip dysplasia at birth. My mom says the doctor suggested the body cast treatment but when that was not accepted, he suggested alternative swimming and corrective shoes to avoid “pigeon toed” walk. I was told no gymnastics in school. I was always last at the long distance running but great at short runs. Flash forward and as a mother of two, I carried two big boys without issue and continued swimming on matress team. However 20 years later and years of sitting in office jobs, i gained weight. Do in 2017 i joined triathalon team and to challenge myself with swimming, biking and running. I have done better but have limits to ability to improve run pace by much. Now I have hip socket pain in left hip. I need to find a local specialist orthopedic to help with this pain to avoid any damage.

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