Clare

I’m a 34 year old, spinal nurse sister, with 2 children and 2 step children. I have been an active gym goer for 15 years and believe keeping in shape to be important. I have always known I was born with my hip dislocated and that I had a splint or something on for quite a while as a child, as it wasn’t noticed until I was 6 weeks old. Throughout childhood and early adulthood I had no issues and it was never discussed.

Unfortunately my parents passed away before I turned 20 so I don’t actually have anyone to question about past events now.
Around 4 years ago I started having what I thought was lower back pain. I had xray and scans that turned out to be fine. I put it down to my career.
I stuffed along with amitryptaline at night and ibuprofen as required in the day but, around a year ago, decided I wasn’t happy to struggle like this at my age and saw my physio again who suggested the pain may be hip related. This suddenly clicked into place with me and upon returning to my gp I had a hip xray.

This, I was instructed by the doctors receptionist, was fine!!!!! I was devastated and relieved all at once.
I carried on but the pain was getting worse and I could now clearly define it as being deep in my hip and around my back. All I had to do to exacerbate the pain was a light gym workout or a lot of bending or sitting.
I went back to the gp and finally got to see an orthopadic doctor who looked at my past hip xray and immediately said I had hip dysplasia and that it was quite obvious from the xray.

She referred me onto a hip specialist who also said I have hip dysplasia on my right and also slightly on my left. He said he needed to refer me to a hip dysplasia specialist. I’ve been waiting 4 weeks now and pray they will help me.
I started taking tramadol 50mg as required 4 weeks ago. 2 weeks ago I was shunted from behind in a minor car accident and since my pain has trebled. I went to a&e who didn’t feel I needed xray just rest. I had to call in work sick and went to see my gp 1 week ago as the pain was crazy. She put me on 100mg tramadol 4 times a day. It helps with regular paracetamol and ibuprofen but I would rather know my outlook.

Importantly to me is what exercise is it ok to do? I get told swimming but that isn’t me. I’ve been heavily into training for years and enjoy kick boxing and lifting moderate weights. I want to know if I’m making hings worse by doing certain exercises (eg squats and lunges) or if the pain I feel afterwards can be managed as there is no damage being done. I may seem to be ridiculous here but exercise is so important to me. Both physically and mentally.
Can anyone advise or help? Tia.

20151227_151620

I’ve posted my most recent xray for you all to see.




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  1. Rebecca says:

    Hi Clare. I had hip dysplasia as an infant and recently was diagnosed with Ehlers Danlos Syndrome (hypermobility type) a genetic condition that causes hypermobility of joints. I think the EDS was related to the dysplasia. I wore a cast and then a brace as a baby and the doctors said I was “cured” so I was not followed for this as I grew. I started having more instability in my 20s and hip would slip painfully out of alignment and I would have to adjust myself to get it to pop back and feel better. Now at 40 after pain for a year when driving, walking, climbing stairs, etc, I was diagnosed with a tear and fraying in my right labrum. One surgeon at Hospital for Special Surgery in New York told me that because I still do have hip dysplasia, if they repair it, there is only a 30% chance of success and it will likely happen again and again. I was referred to another surgeon at HSS to discuss Periacetabular Osteotomy to rotate the hip and provide better coverage. I just had imaging to assess my joint and see if I will be a good candidate for it. If there is too much arthritis then the next stop is hip replacement.

    You could potentially have a tear in the labrum or impingement that is causing the extreme pain. These can be seen with an MR Arthrogram (They inject a contrast agent and then do an MRI). There is a Periacetabular Osteotomy page on Facebook with over 1400 people that have hip dysplasia and are pre or post op for the PAO surgery, hip replacement, labrum repair, etc. They have been through all stages of injury, pain, physical therapy, and surgery. You should definitely check it out–you will learn quite a lot. I hope you get the answers you need to feel better soon and be on the road to recovery!

  2. Angela says:

    I am a 41 year old active female with 2 children and a fairly busy lifestyle. I also had hip displaysia, but mine went unnoticed until I started walking and my hip would dislocate. I had surgery at age 1 (metal plate inserted) and I was in a body cast from my ribs to my toes on one side. At age 2, the plate was removed, and I had no issues for a number of years.

    1 morning (I was 17 or 18 years old), I jumped out of bed and my hip gave out (and I ended up on my bedroom floor). I stood back up and all was fine. Little did I know what was going happen over the next 20 + years.

    The pain and lack of mobility increased over the years, to the point that I 2013, my specialist “forbid” me to jog anymore (something I was still trying to do approx 3x a week even with the pain). I had been poked and x-rayed by a number of specialists, but all were unsure of hip replacement due to my activity level (they thought I would wear it out quickly). Late 2013, a new specialist suggested pelvic osteotomy (he would do some cleaning up -arthroscope – of the joint and a colleague would do the actual osteotomy. ) I felt some Hope…

    I met his colleague, and the plan was finally solidified November 2014. I waited and waited (and called and emailed a lot) until finally it was my turn.

    I had arthroscope and pelvic osteotomy surgery January 2016. (5 and 1/2 hrs surgery time) I am on my 6th day of recovery, and honestly, I have never felt pain like this in my life. The doctors warned me that recovery is rough, but I don’t think I really understood until now. The surgery is considered “successful” and doctors are happy with the result, so now I try to stay positive and heal. Short term pain for long term gain.

  3. Dasha says:

    Thank you so much for posting the picture of your x-ray. I’ve been struggling with pain for years now and had an x-ray done to test for arthritis which came back negative. I’m now comparing our x-rays and they look almost identical.
    I haven’t been officially diagnosed but I am finding that in order to get any results from doctors you have to have done your own research and have a lot of examples/historical data to show them. Your case will be helpful for me – so thank you so so much for sharing.
    I’m also unsure about exercise. In the last few years I’ve become very active and my pain has worsened and start to spread around my body to other joints. I saw a physio last year who attributed my pain to weak glutes and gave some exercises with resistance bands. I suggest you look into gentle pilates and yoga as a starter. I know it’s not glam, but it might help you develop neuromuscular training to support your joints – especially for deeper or more subtle muscles. I know you said swimming wasn’t your style, but sometimes we’ve just got to adapt – especially if it’s been recommended by a medical professional.

    Right now I’m testing my glute and hip strength with videos online and finding simple exercises to do (like clam-shells for legs with a resistance band) because if simple things like that are challenging it shows that there’s a lot of work to be done!

    It’s frustrating to be living in a time where mainstream health doesn’t consider the whole of our bodies. Over the years I’ve gone from one specialist to another who have each focused in on one tiny part of my body, given me specific exercises to do, only for me to find pain elsewhere in the body…

    I’ve kept a note of it all, and I keep a diary of when I feel pain/where/what activity brings it on, etc… including when I feel pain free, or which exercises help. I hope a medical professional will be able to look over it all, including my x-ray, and help me. In the meantime, I’m doing my simple exercises, and I’m cutting back on those that have increased my knee and hip pain (like running.)

    I hope you’ll keep us posted about your progress! Good luck!

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