ADULT HIP DYSPLASIA, OSTEOARTHRITIS, AND LIVING WITH A LIMP

Living with adult hip dysplasia and osteoarthritis when you're not "old". How that impacts daily life and what can be done about the pain.

WHAT IS ADULT HIP DYSPLASIA?

I used to have a life without hip pain. I had that life for 35 years or so and then one day I started to get a nagging pain in my left hip. I put up with it for a while but eventually headed off to the physiotherapist to get it worked on and to get some home exercises. It helped and it settled.

But over the following years it happened again.....and again.....and again....

And when something keeps happening you need to look deeper - so I was sent for an xray, and lo and behold, it turns out I had adult hip dysplasia in my left hip - which is apparently more common in first born girls who had young mothers (something to do with tight wombs, hormones, and other stuff). I ticked all those boxes and ended up with my "dodgy hip" (as I began to refer to it).

hip dysplasia
what hip dysplasia looks like (from https://hipdysplasia.org/adults/)

MY NEW HIP NORMAL

In the early stages, my doctor's recommendation for my new hip "normal" was to be more careful when my left hip started to ache - to ease back a little on my walking, to take pain relief when needed, to keep mobile, and if it got worse then my next step would be an ultrasound guided cortisone injection.....and last resort was a total hip replacement (WOW!!)

Being careful and using moderate pain relief medication worked well for the next couple of decades, with a few physio visits thrown into the mix when needed. Then a couple of years ago it went up a notch and off I went for my first cortisone injection. It dropped my inflammation and pain levels back to being manageable for a year, and when things got really bad last October and I couldn't go for my usual morning walks anymore, I went for another injection. It helped immediately but only gave me a month or so before the pain was back full bore and my walking days were a distant memory. I thought it was due to me getting "old" but I read this great reminder and felt better:

This isn’t an old person’s problem, it’s an active person’s problem.
GMA co-host Lara Spencer (who had a hip replacement in her 40's)

WHERE I AM AT THE MOMENT

I ended up back at the doctor (this is me - who is an avoider of doctors wherever possible!) with a deep pain in my left groin area and down my left outer thigh that nothing was alleviating. She sent me off for an ultrasound and xray to check how things were going. So, after having both of those....it turns out my left hip cartilage has worn away and I'm bone on bone (due to my shallow hip joint and the extra wear and tear I'd been placing on it over the years) and on top of that I also have osteoarthritis - oh joy! No wonder things hurt!

So.....now I'm on much stronger anti-inflammatories and pain killers, and I have a referral to an orthopedic surgeon to discuss a total hip replacement! Not quite what I expected from my follow up appointment... But, I know I need to do something because my life is significantly affected by the constant ache and the jolts of pain that come when I do something that adds extra impact to my hip. I'm really tired of walking with a limp (like one of those old ladies you see at the shops who are rocking side to side as they walk along). My husband calls my limp - my "rollicking walk" and that at least gives me a smile - I'm like a landlocked sailor!

WHAT I CAN'T DO ANYMORE WITHOUT PAIN

Just to give you an idea of how this impacts me these days, here's a list of some of the things that hurt (either a little bit or a LOT):

  • Walking for more than 5-10 minutes (I start to limp)
  • Striding, walking quickly, or running (I can't do any of these)
  • Going to my exercise class (that had to be replaced with Tai Chi)
  • Lying on my left side in bed (so my sleeping isn't great atm)
  • Sitting on a low chair (I now need a cushion) or on the floor (not happening)
  • Crossing my legs (now it's both feet evenly on the floor)
  • Getting in and out of a car (I now exit and enter with knees together like royalty!)
  • Pivoting or twisting quickly
  • Stopping suddenly
  • Lifting my left leg up (getting dry after a shower is trickier)
  • Squatting (now I kneel very carefully)
  • Bending forward from the hips to pick something up (that's beyond painful!)
  • Sitting on my husband's motorbike (a shared hobby that I can't do anymore)
  • Painting my toenails (roll on winter and closed in shoes)
  • Climbing up stairs (going down is fine)
  • Stepping up and over something and stepping sideways to the left
  • Putting on my pants, socks, or shoes (I grimace a lot while doing these)

WHAT'S NEXT?

Due to the delays and cancellations that covid brought with it, the public health system here in Australia has been severely impacted and backlogged,with wait times now over 18 months or more. Even getting a consultation appointment with a specialist is delayed with a wait time of 3 months. So, if I need a hip replacement, it will have to be in the private hospital system - and I need the very top health insurance cover (that I didn't have when this started) because it's an expensive operation. Nothing can happen immediately because there's a 12 month wait for pre-existing conditions before health insurance will cover the procedure. So, no operation until this time next year.

What I can do in the meantime is to take my anti-inflammatories and pain meds, ease up on my walking (as an alternative I walked in a neighbour's pool when the weather was hot - which was a good way to stay mobile with less impact on my hip). Now that it's too cold for the pool, I can ride my bicycle (another version of mobility without weight bearing), and I can still ride my scooter (Yay!). I'm looking into the GLAD physiotherapy program that comes highly recommended for strengthening the muscles that support the hip, and I absolutely appreciate the mobility I still enjoy. I'm grateful for modern medicine, I'm reading up on helpful articles about preparing for hip replacement and recovery from it, and I always choose positivity over being miserable about an outcome I have no control over. I loved this quote from Krista:

I can choose to be quietly, solemnly happy - Krista from A Life In Progress

UPDATE

I've had my consultation appointment with the orthopedic surgeon, and he confirmed that I have hip dysplasia and a total hip replacement is my only option - so (once the 12 month waiting period for my health fund to approve payment passes) I'm booked in for surgery in March next year. He's very confident I'll have a great result - I'm "young, fit, and slim" according to him (compared to his regular clientele who are older and heavier than me). Apparently I'm still quite young for a hip replacement, but he thinks it will last me for at least 25 years, so I'm definitely onboard with getting rid of my pain and getting my mobility back on track. So.....onward and upward (with a limp for now)....

UPDATE 2

Things change so fast don't they? A couple of months after seeing the surgeon, my hip deteriorated even further and continues to decline. After a re-evaluation of my situation, he's booked me into the public system as a more urgent needs case, and I'm due for my operation in October this year. I'm holding on to the hope that it all goes ahead smoothly with no cancellations - but I also know that these are still uncertain times and I have my March date as a back-up. Stay tuned.....

UPDATE 3

After a few unexpected upheavals in the week leading up to my surgery date (you can read about that HERE), my operation went ahead and went remarkably well (although my surgeon said I was a "challenge" due to the dysplasia). If you'd like to read more on my surgery you can go HERE

Thanks for following along with my journey through this tumultuous time.

RELATED POSTS


DisclaimerI am not a medical professional, and this post should not be taken as specific health advice, it relates only to my own health. I advise you to speak to your own Doctor or health professional if you have a similar problem.


Living with adult hip dysplasia and osteoarthritis when you're not "old". How that impacts daily life and what can be done about the pain.

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Living with adult hip dysplasia and osteoarthritis when you're not "old". How that impacts daily life and what can be done about the pain.

38 comments

  1. I truly feel for you. Chronic pain is so debilitating and when it stops you from not only doing what you love, but going about your normal occupations... yep, I truly feel for you. Take care.

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    1. Thanks Jo - I remember my torn calf muscle and that was a killer (as you'd know) but only for a short timeframe - this feels endless atm. But I'm choosing my attitude and to make adjustments - and this too shall pass!

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  2. Chronic pain is so overwhelming - and not being able to do basic things like get dressed or step up a curb without pain is going to really mess with your mood. I had a back issue when pregnant due to the softening of ligaments and could do little without pain and I kept thinking I was depressed because it really got to me. Just look after yourself and cut yourself slack whenever you can.It's a long haul #Lifestories

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    1. I had the same issue when I was pregnant with child number 2 Lydia (rolling over in bed was a nightmare!) This feels like another one of those issues and I know I'll get through it and it'll be fine in a year or so, but when you're in the middle of it, it's just a tad disheartening (and a little depressing!)

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  3. This isn't good at all Leanne but you seem to be counting your blessings and remaining positive, but, like Jo, I feel for you! I'm pleased you can cycle and still use your scooter, they are both great pastimes to help with the long wait ahead of you. All the best as you start the process with your appointment in May, take care x

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    1. Hi Deb - I'm glad you thought I sounded even a little bit positive. It's going to be my mantra going forward - I can't change what's going on, but I can choose my attitude towards it. I'm choosing to be as proactive as possible and not to let the darn thing get me down!

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  4. Oh dear - you poor thing Leanne! I think this might be my path too. I've had an ache in my left hip that comes and goes for years now. It's also very tight in that hip as compared to the other. My yoga and pilates practice every morning really helps to keep flexibility there and I really think that has helped reduce pain. I take Panadol Osteo if ever I have too much pain there. I'm not as bad as you though. I can still do most of the things in your list! However I do have osteo arthritis (comes and goes) as does my Mum. Mum walks with that hobble. Best of luck to you. I look forward to hearing the outcome of your next appointment. xo

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    1. Hi Min - you're a few years behind me - so keep up the pilates! I'm also wondering if I should have taken collagen suppliments to help with the cartilage I've lost - but I took glucosamine for years and the inevitable still happened. I'll be interested to hear what the surgeon has to say, and then how I'm going to manage it for the months ahead... stay tuned!

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  5. Hi Leanne, what a shame this is happening to you. But, true to the Leanne we have come to know, you seem to be approaching this obstacle with a plan and a positive attitude. You are so right about it being an 'active persons' disease. I can name at least six people I know including 2 family members who have had hip replacement surgery during the past three or four years. All of them are athletic, active adults. All of them are now pain free, or at a manageable level, and all have returned to their active lifestyles. You will get there too. Blessings

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    1. Oh Suzanne, thank you for those encouraging words! I'm glad my post sounded positive because that's my aim in how to approach something I can't fix immediately. And yes, I always have a plan to point me forward! And so good to hear that those people you know had good outcomes after surgery - that's a big part of my plan too!

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  6. Oh you poor thing! Chronic pain is no fun and it sounds like you've been battling this for quite some time.

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    1. Hi Joanne - the last six months or so have been the toughest. Up until then it came and went and was easier to deal with. Constant dragging pain isn't great and I hate the idea of taking too many pain killers - so I have to manage that side of it too. I'm working at getting the balance right until I see the surgeon for a consult and some more advice...

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  7. Hi Leanne - I have been living with Chronic Pain for a few years now and I know how debilitating it can be. I have hip and back problems too due to osteoarthritis and the options were opioids , which I refuse to take and nerve blockers. I have been an active person all my life but life is not the same and I have to adapt and accept that that life is gone but not over. I find it hard to walk a short distance without being in horrible pain. A doctor is recommending CBD oil to be taking orally. I read all I can about living with pain and uses meditation, mindfulness, Pilates etc. In your case, about hip replacement, I know of people who had it done and it went very well. A blog I recommend is Turning Straw into Gold by Toni Bernhard. Sorry for the long comment but your story struck a cord.

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    1. Hi Yvonne - I always like long comments because they're often really helpful. I'm going to check out that blog you recommended. And yes, I think there's a point where we have to accept chronic pain and modify our life around it until a better solution comes along. My mum does really well with bearing up with arthritis etc and I know it's nothing compared to what a lot of people deal with.....but it's also tiring and I feel cheated about what it's stealing from me atm. I'm looking forward to seeing the surgeon and being more informed - then onward and upward (slowly!) towards getting it sorted and hopefully getting my mobility back. I really hope you find a solution to yours too because it's no fun at all to live with chronic pain. x

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  8. Leanne, how "yucky", big time!!! Love how you take inventory of what you can and not do. Your positive attitude is inspiring. I, too, have struggled with a physical disability, with, from time time, painful discomfort attached. Am so grateful for my "inherited" and "learned" positive thoughts. My Mom, when experiencing reduced mobility in later years, told me that when she passed by a mirror she always said, "Who's that?" and I learned that when people remarked on my slightly twisted shoulder appearance, I could always answer quite truthfully, "Oh my goodness, I keep forgetting about that. It's nothing new." Also, know many who have had a hip replacement with good results. Will keep you in my thoughts for the same.

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    1. Hi Judith - my mum is a very positive role model for dealing with this type of thing too. She's had both knees replaced and always says that the pain she has from arthritis etc is still better than dealing with a terminal disease (that many of her friends have had to face). If you can't change your situation you can choose to let it defeat you and be miserable, or you can step up, modify, and get on with what you can. I'm grateful I'm still walking (short distances!) and the pain isn't insurmountable. I'm also looking into getting some professional advice about pain management etc so the year ahead doesn't devolve any further before the magic operation happens.

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  9. Hi, Leanne - I am so sorry that you have been experiencing all of this pain and restrictions. Your positive attitude through the whole thing really stands out and is very impressive. Sending warm thoughts your way!

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    1. Hi Donna - thanks for your kind words. I must admit to a few tears here and there when the whole thing overwhelms me - I just wasn't ready for it to deteriorate so suddenly and for it to have the impact that the constant pain causes. But, life goes on and it won't beat me - once I get on top of it all and figure out my attack plan, the year ahead should be quite do-able! x

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  10. I'm truly sorry to hear about your discomfort and limited mobility, Leanne. You've mentioned it a few times, but I didn't realize the extent of it. Your approach is spot-on though, focus on what you can control and be grateful for what you do have. That said, shedding a few tears is perfectly understandable as well. I was interested to hear about your healthcare and insurance (being in the health insurance industry myself). I know we pay a lot for healthcare here in the US. On the positive side, an urgent surgery like yours can be had relatively quickly when you've already tried the physical therapy and other less intrusive options, as you have. It would be nice if we could find a happy medium between cost and accessibility. Anyway, I will be thinking of you and sending love and healing energy your way.

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    1. Thanks for your kind words Christie. I'm in full understanding of the private health funds and their need to try to cover some of their costs. A hip replacement here is over $30,000 if I paid for it myself, so (unless I get hit by a bus and it's an emergency) I need to wait and pay into a higher level of cover for at least a year before they'll pay out. Sometimes it sucks to not be one of the rich and famous - but that's okay because I also don't have to dodge the paparazzi :D

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  11. Hi Leanne, I am sorry to know about the difficult days you are having.
    I am 57 now, and I too have pain, not in the hip area, but in my knees, and lower back. Because of which I can't run (I just miss those long runs); and I have to be very careful while bending my back, while sitting, getting up from chair or bed, while putting on trousers etc.
    The body has a way of healing itself, may not completely; but to a great extent.
    There are some things that are simply not in our control. But a few others are. The only way is to manage things in such a way that the life and times that we have with us at this present moment is happy and joyful.
    And with the abundance of positivity and the zest for life you have, you will be able to manage this.
    Take care, Leanne.
    Wishing you the best, and I am sending you my good wishes and prayers.

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    1. Hi Pradeep - it's a strange feeling when you think you're still 35 but your body starts to tell you that you're not anymore! Chronic pain is something that we learn to live with if we have to, but I know I'll be much happier when it's investigated further and I have some options for how to go forward with this. I do try to remember that it's just a small part of my life, and there's still a lot of time when I'm not in pain and when my life is really good - you're right that it's about focusing on those times and not letting the tougher stuff get us down.

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  12. Hi Leanne, chronic pain is so debilitating isn't it and I really feel for you. I don't know how I would cope not being able to freely move around. You mentioned in a comment on one of my posts you might take a look at the chair workout. I would be interested to hear how you felt if you did the exercises. Take care and sending hugs.

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    1. Hi Sue - movement is so central to your life that I hope nothing like this ever presents itself on your horizon. I take comfort in knowing that it's from a childhood condition and not from neglecting to be active etc. I do miss my walks and the freedom to move easily and speedily. I gave the chair workouts a go, and they're good if I keep the pace moderate, as soon as I speed up too far with my leg movements it tends to grab and catch - which is super painful. Hopefully the surgeon will be able to give me some more suggestions and I've heard of a physio approach that might be good for me once I've discussed it with him. Fingers crossed....

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  13. Wowsers to the cost without private health insurance... but what a shame you do have to wait. I am sorry. Bone on bone pain is the worst. I have this at both my thumb joints and I had each one done separately, with some material laid in between the joints, and with hand physio afterwards, things are OK. I still get some arthritic pain but nothing like it would have been without surgeries. These were done in early 2000s and even with top health cover (Teachers health is the best....and you could be in it as you have a teacher in your family) there were out of pockets but the hospital costs were 100% paid. Anaesthetists costs are not to be sneezed at either and I am very familiar with having conversations with them about a reduced fee if they can see their way to doing that. I have absolutely no qualms asking about this of any doctors/dentists since I had my cancer diagnosis. So for now, that sounds pretty limiting so thank goodness for creative pursuits!! Thank you for joining in this Monday’s #LifesStories on Denyse Whelan Blogs. The community of bloggers here connects us wherever we are in the world. Looking forward to seeing you in two week’s time on Monday 23 May. Denyse.

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    1. Hi Denyse, one of my friends had her thumb joint replaced (it was completely worn out from arthritis) and she was given a gold joint - probably gold plated and not solid... I'll have to ask her. I'm envious of your health fund and even with the cover we used to have, it still wouldn't have covered me for joint replacement - I just assumed I'd have more time to prepare and to up my cover - I didn't realize it could detiriorate so quickly and painfully! Still, onward and upward - and for now it's about managing the situation until I can get it sorted out. The physical side of getting older certainly has its downfalls at times!

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  14. Leanne, A friend of mine had hip surgery after trying all the other approaches - like you. On the positive side to look forward to, she was up walking in a day and doing an "easy 2 mile" walk in a month - with no pain. It's good you can look into getting prepped for it - things like what exercises to do so recovery is quicker. It's bad you have to wait so long....but I love how you're still focusing on the positives. I recently added in more strength training as it helps my knee pain if my leg muscles are stronger! Yeah, managing the body takes more thought these days.

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    1. Hi Pat - I've heard some great stories about the positive recovery and ongoing life quality after hip replacement - which is my light at the end of the tunnel. In the meantime I just need to figure out how to manage things until I have more information and a surgery date. I'm SO looking forward to my consult with the surgeon so I have a better understanding of what I'm living with :) And yes, keep those leg muscles strong!

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  15. Oh Leanne, I'm sorry to hear you've been experiencing so much pain and how it restricts your body movements. I hope your consultation appointment gives you the information you need. Your positive attitude is impressive. Sending warm thoughts and positive vibes your way! Thank you for linking up with #weekendcoffeeshare.

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    1. Hi Natalie - thanks for the positive vibes - I've decided I need all the help I can get! I'm looking forward to having a few of my questions answered and then I can get on with managing the 'new normal' for the rest of the year ahead.

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  16. Oh man Leanne. I'm so sorry that you are going through this but I'm thankful you shared that information. I had no idea about the any of that! I'm guessing that your recovery should go well because you have taken care of yourself and have been active. You seem like a woman who will not slack on her PT and recovery.

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    1. Hi Kirstin - I looked after my mum after both her knee replacements and was really tough on her about doing her physio exercises for her recovery - so I'll have to be just as tough on myself when the time comes. I thought I'd share the extra info in case others come up against this and are looking for some "real life" answers.

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  17. My darling friend, I am so sorry that you are experiencing this pain and for the way it us impacting your day-to-day life. Not to compare you with our pup, but we did have a beloved dog who struggled with hip dysplasia and was practically unable to walk. She so badly wanted to go on walks and do all the things she had enjoyed in her earlier, pain-free life and would try but would very soon have to lay down to ease her pain. I am sorry that Covid delayed you getting help, and that now you have had to increase your insurance and add your name to a year's long waiting list for the replacement surgery. Praying that you can continue to be mobile with the help of your scooter and enjoy life without too much pain until you can finally get relief. I know replacement surgery is no fun but I have seen a number of friends recover remarkably quickly. I am sure you will do so, too.

    Please continue sharing your journey with us. I am going to share this post with my husband who is experiencing significant hip pain. He can't lay on his side, struggles to squat, and even walk at times. And yet he is playing baseball every Saturday but is in agony Sunday through Friday between games.

    Big hugs to you and prayers for your complete restoration of pain-free health.

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    1. Hi Leslie - thank you for your kind words (and I wasn't offended at all being compared to your pup - I know exactly how she felt!) I also relate to your husband where you fight the inevitable because stopping feels like another nail in the coffin. I went for a lovely half hour walk with my husband last week and spent a horrible wakeful night and two painful days being reminded that pushing through the walk wasn't the right thing for this stage of my life.

      I still choose to do as much as I can, but have to come to terms with it being a lot less than I was doing before and that I need anti-inflam + pain meds to do it. Chronic pain is such a drain, but I know there's a (very small) light at the end of the tunnel - time passes and I'll be out in the sunshine next year and this will be a distant memory (fingers crossed - but not my legs because I can't anymore!!) xx

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  18. Hi Leanne. I just joined #WeekendCoffeeSwap and stumbled on your blog. So glad I did. In the middle of a very similar experience. Cortisone shot in two weeks. Have severely curtailed a very active lifestyle. It seems I am in good company with a lot of people. I hate to say it, but it makes me feel a little better (but not well enough to not feel depressed about this sad reminder that sooner or later things fail.) Anyway I look forward to learning more about you and reading your blog. My screen name BTW is pfiddlergal and my blog is A Mile at a Time (lretirementjourney.com)

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    1. Hi Laura - I hope your injection goes well - the secret is to give it at least 48 hours before actively using your hip - gives the cortisone time to work before getting squeezed out of the area. I found my first injection was quite helpful, the second (a year later) only gave me a month or so of relief - my surgeon said this was a common outcome. It's a daunting feeling having your life curtailed by something unexpected, but I just keep telling myself that this time next year I'll be pain free and mobile again. Athough the surgeon said my right hip was shallow too.....so another one is in my (hopefully distant) future....sigh.... Thanks for visiting and I hope you'll be back :)

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  19. I am 48. Just had my right hip scoped and will have the left done in November. I only have mild dysplasia and only a little arthritis so we are trying to put off the inevitable double hip replacement for as long as possible. Both hips have labral tears and impingement issues. The recovery process is long and sometimes frustrating but I already feel at least a little better with the first scope so far. I do miss having normal mobility and being able to walk around for more than 15 minutes. I am hoping by next summer I will see big improvements after having time to recover from both surgeries. Your THR should be a much faster recovery but it's a bummer that you have to wait so long!

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    1. Hi Melanie - I managed to keep on top of mine right into my late 50s, then it was time for the ultrasound guided cortisone injections and then bang (!) straight into full arthritis and impingement etc. I thought I'd have a few years of gradual decline, but it hit pretty quickly and hence the wait for my health insurance to catch up. I've heard very good things about THR so I'm counting down the months - and thinking how nice it will be to walk any distance at all without the pain and limp. Fun times!

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