Donna

Hi,
I was born with hip dysplasia in my right hip, which wasn’t picked up until i started walking at 14 months old. I had surgery at 16 months old and had the metal work taken out 12 months later.

Growing up i took part in most sports activities at school, but i have a huge scar down the side of my right leg which i was always conscious about which made me hate wearing shorts. My pain started at the age of 17 when i was carrying my first child. I thought that it was the weight of the pregnancy that was causing the pain.

I went on to have another child at the age of 19 and by this point the pain was unbearable. After i had my baby i went to see a doctor and was sent for an x-ray. The x-ray showed that my hip joint had worn on the inside of the socket and the roof of the hip was shallow. I suffered for another 2 years in excruciating pain, taking a cocktail of pain killers and anti-inflammatory tablets and using a walking stick. This was one of the lowest points in my life.

I had 2 young children and struggled on a daily basis with simple chores and activities. Eventually my consultant decided that a PAO would be the best option and would hopefully give me between 10-20 years before i would need a total hip replacement. I had the surgery in 2000 when i was 21 years old. The surgery took 6 hours and i was in hospital for 10 days.

I don’t remember much of the first couple of days as they gave me morphine for the pain and i was completely out of it. I was told by my consultant that i would take between 12-18 months to fully recover from the surgery. However my recovery was a lot quicker than expected.

The first 3 months i was on crutches and could not bare any weight on my hip. After that i gradually started to put weight on my hip and went down to one crutch. Within 9 months i was fully recovered and totally pain free. The PAO surgery was a success for me and it has given me 12 years without any pain. I am now 35 and i started with pain again around 2 years ago. It has got gradually worse and i have also started getting pain in my knee on the same leg.

I have been back to see a consultant a few weeks ago. He sent me for an arthrogram on my hip which was not a pleasant experience but i got a steroid injection at the same time to help my pain. The injection worked well for a few days and has taken the edge off the pain in my hip but it has not completely gone. I have also started wearing a raise in my shoe as my leg is 3cm shorter than the other.

I am now having a lot of pain and burning sensation in my knee and i am waiting for an appointment for a scan. I think the years of limping has affected my knee, i’m hoping that there will be no serious damage. Has anyone else had problems with there knee as well as their hip?




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  1. Jo says:

    Hi Donna,
    I have had hip pain for years on and off, I have always felt there was a problem with my hip but have not been diagnosed. I was sent for physio on a couple of occasions to no avail.
    For the past couple of weeks I have had a burning pain in my knee on the same side, especially when driving it is extremely painful ( hip and knee ) but hadn’t really linked the two together before now, hence me looking online for some answers.
    Having read about your symptoms it has encouraged me to return once again to my GP to investigate further with an x-ray.

    Hope you have a successful outcome.
    Jo
    X

  2. Donna says:

    Hi Jo,

    You must persue this, If the x-ray does not show anything then ask for a scan, they are much clearer. I really do feel for you, people dont suffer with pain for no reason. Sometimes you have to make a big song and dance about things before the doctors take any action and refer you to a specialist. I hope you get your x-ray and some answers soon. Keep intouch!

    Donna x

  3. Fiona says:

    Hi Donna and Jo,
    I have bi-lateral hip dysplasia (worse on my right) and have just undergone a PAO to correct the alignment of my socket. Just thought I would leave a reply to your comments as I have also had a burning pain in my knee, both before the surgery and after it. Is your pain in the outer side of the knee? If so, it may well be the IT band (iliotibial band) that runs from the hip to the knee. The physiotherapist I have been seeing since the op told me that when your leg is at a 30 degree angle a lot (ie, when limping/using crutches etc) it puts a huge amount of strain on the IT band and it can be incredibly painful…sometimes at the top of it and often at the bottom (the side of your knee.) Since I have been weight bearing again and not walking around with a slightly bent leg, it has improved a lot (the physio also massaged it very hard, which hurt, but definitely loosened it up. If the knee pain you are both experiencing is not in the outer side, the above info may be of no help to you at all, (sorry) but just thought I’d share what I was told, in case it helps :)
    – Fiona

  4. Ellie Townsend says:

    Hi Donna, yes I was born with hip dysplasia on my right side and I suffer with a large scar down my leg and also through my groin. I’m 17 years old and now undertaking my first total hip replacement and my knees need replacing from the limping. My back has now also grown in a ‘s’ shaped from the limping.. thank you for sharing your story it has given me hope that i can carry a child with this condition.
    – Ellie

  5. Donna says:

    Hi guys,

    Thank you for sharing your experiences. Since my last post, my knee has improved. I think this is due to excersise, physio and a bit of weight loss. My most recent visit to the hospital has been a bit disappointing though. The results from MRI and CT scans have shown that I need pelvic reconstruction as well as a hip replacement. My socket is not deep enough to hold a new hip in place. I’ve put my surgery off until next summer as I’m in my second year at uni and want to complete my degree before taking a year out of my life to have the surgery and recover. Ellie, I feel for you having all of the other problems through hip displasia. You must be in quite a lot of pain. But I will say to you, that hip dysplasia runs in my family in the females and both my mum and aunt have had there hip replacements in the last five years and there other symptoms such as knee and back pain have improved as a result. Also you are young and will probably recover well as I did when I had my PAO at 21. And I have successfully carried 4 babies so it is possible. Keep positive :) At the moment I’m still going to physio to build up my muscles in my right leg as they have weakend since my last pregnancy 2 years ago. My doctor has prescribed me with Naproxen which seem to help ease the pain, though I only take them when the pain is unbearable. I take these along with omeprozole so they don’t upset my stomach. I have also foud that my hip pain seems worse just before I get my period and for a could of days after. Does anyone else experience this? It’s really good to hear from other people that have had similar experiences to me and I hope my updates help others too. I try not to let this problem get me down though at times it’s frustrating. I’m hoping that with the advances in medicine and technology that one day there will be a better solution for hip displasia patients. I saw something on the news recently about cartilage replacement therapy in hip joints that doctors are experimenting with. Time will tell I suppose. Take care, Donna x

  6. Karen says:

    Hi Donna.

    I too was born with hip dysplacia. Unfortunately, the doctor who oversaw my care as a baby and in childhood should not have worked on me and should have referred me to a more experienced and knowledgeable doctor but only did so after many unsuccessful surgeries. After going to Cleveland Rainbow Baby and Children’s hospital and having numerous procedures to correct my hip and also a leg lengthening procedure I was good for many years. I am now 43 and the pain is getting worse with each day. I have also noticed the pain is worse before or during my monthly cycle and the pain radiates from the front groin area all the way around to my lower back. I’m sure I need a hip replacement by now because the doctor had told me I would need it by the time I was in my 30’s but I do not have health coverage so there is really nothing I can do. I now hear a popping, crackling noise when I move a certain way. I looked into obamacare but the premium is extremely expensive, not to mention the $12,000 deductible to boot :/. Affordable health care is only for the young and healthy. I was so hopeful that I’d be able to get health insurance but now I just get punished each year because I can’t afford it.

    Anyway, I hope all is going well with you. It is nice to be able to read other’s stories who have gone through and are going through the same thing. I’ve always felt alone in what I go through because no one understands.

    Take care,
    Karen

  7. Donna says:

    Hi Karen,

    It saddened me to hear your story, that you cannot get any treatment. I live in the UK and we are lucky to have the national health service where treatment is free of charge. Your symptoms that you are experiencing now sound like what i am getting at the moment. I have the popping and crackling sound that comes from the hip joint. Are you taking any pain relief? Do you have any support from family?

    Donna x

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