Nancy’s Story

It wasn’t until the last two years at the age of 37 that I was diagnosed with retroversion hip dysplasia. In late 2010, I felt a sharp pain in my right hip in the groin area. I did not know what to think. I just dealt with it until the pain become so bad that walking was a chore. I made and appointment with a well known and highly recommended hip surgeon here in Richmond, Virginia. It took me over four months to get an appointment with him. On my first visit and in less than 10 minutes time the doctor mentioned that he thought I had a connective tissue disease. I had seriously thought that I had Ehlers Danlos five years prior but then a local rheumatologist nixed that… I put it on the back burner.

My hip surgeon did a series of x-rays and was able to make the diagnosis of hip dysplasia as well a FAI. He recommended that I try physical therapy for to see if that would help. During this time I also had a cortisone injection to try and calm the pain down. Physical therapy helped me strengthen the muscles around the hip but that was about it. After working with my PT and things were not getting much better I went back to my hip surgeon and I was scheduled for a hip chondroplasty. The hip scope worked. There where two labral tears that were removed. The relief that the hip scope brought was temporary and within less that four months I was miserable in pain. My hip was rubbing on the rim of my pelvis. My hip surgeon wanted to try and do as much as we could to delay the major periacetabular osteotomy surgery.

So within 11 months I was back in the operating room to have the PAO surgery. This was my 13th orthopedic surgery in my short existence. The surgery was brutal and pain was ungodly. I was bedridden for a month and out of work for just about five months. It was a great expense to be out of work not to mention that no one from my department at work called me or came to see me in the hospital. I did not even get a get well card until two months after surgery. I have only been back to work since December of 2012. Things were different when I went back most of my coworkers were very standoffish. I have been constantly reminded that I was out of work for five months. It has also been thrown in my face how hard my coworkers had to work while I was out. All of this made me feel really bad. Since my diagnosis of both EDS and hip dysplasia I have special American’s with Disabilities accommodations. There are several people who think I am faking all of “this” so that I don’t have to what is considered 2% of my jobs’ functions. And that is not having too get up and down 50 plus times a day to retrieve faxes from two fax machines. My manager has also betrayed my trust when she told a new hire that I had gotten my doctor to write a note to excuse me from this function. I am only 7 months post-op from the PAO surgery and I am still not 100%.

After my diagnosis of hip dysplasia I found this website and I read the statistics pertaining to employment and it is true. This has a great impact on one’s life but spiritually as well as financially. Even though my story seems like a bad one it really isn’t. My diagnosis of EDS as well as hip dysplasia has been life changing. I have learned a great deal and I hope that I can help others that are faced with the same challenges I have been given.




Is this your story? Log in to reply to comments.

64 Notes

+ Leave A Note

  1. Priscilla says:

    I am 33 and I am starting to experience these issues. I had to quit working because of it (I was a server for 16yrs)and it has only gotten worse and the ‘disbelief’ from family and friends is VERY difficult! I’m glad that I found your story so I can maybe use it as an example that “it can happen” and later in life.
    Over the last few years (4 to be exact w/the birth of my first and only child so far)I have been wondering what is going on with me. I’ve had issues from my flat feet all my life and complained about bodily pains all though childhood, but NO ONE has ever believed me. I feel lost, helpless, hopeless, and it’s hard not to everyday be ‘available’ for my daughter physically.
    I am revived, so to say, in my push to get a diagnosis myself and eventually surgeries to start getting better.
    Thank you for sharing these stories, they are inspirational and helpful in stearing folks in the right direction.

  2. karen jones says:

    Hi, my name is karen, im 42 and im from the u.k, Reading your story was inspiring as iv suffered hip pain for atleast the last 10 yrs and nobody believed me that my left hip was given me so much pain! After perservering with my doctor and having tests done i found out 4 yrs ago i have hip displasia and iv undergone 2 keyhole surgery’s to trim my cartlidge that was given me so much pain, but like the rest of you its only short lived! im now waiting to have corrective hip surgery to try and get my life back to normal! Whats shocked the consultants is that iv been a aerobic teacher since i was 18 and iv had 3 children myself and nobody had picked up my hip dysplsia!! its a good job us women are tough!!! keep positive xx

  3. Vera says:

    Olá.
    Sou a Vera, tenho 22 anos e tenho displasia da anca.
    Foi-me diagnosticado aos 20 anos.
    Ainda só fui operada 1 vez, porque ganhei uma bursite, mas sofro diariamente, não só com as dores, mas também com as limitações!
    Ainda não sei lidar bem com este meu problema e vou-me muito abaixo psicologicamente.
    Força a todos.

  4. Katie Berry says:

    Hi. My name is Katie Berry. I was born in December of 1976 (now 36 years old) and was diagnosed with bilateral hip dysplasia in early 1977. I was treated, but with a brace that I am not sure of the name of and from I understand is no longer used. I was supposed then “cured” and sent on my way, but I certainly was not.

    I have led a life of watching out for my hips. I have never been able to run well (now, not at all) or participate in any activities that require any flexibility whatsoever. I am not in pain daily, but only because I am so careful. Luckily, I am a petite person, so weight has not been a problem.

    Over the past 20 years, since I was 16, I have seen numerous orthopedic surgeons and have gotten nowhere. As we know, a standard hip replacement is not usually the answer.

    What has really lit a fire under me, is that just two days ago I was driving my 9-year-old son to lunch and my right leg started to twitch. I could feel it from the core of my hip to my foot. I actually felt like I could not control my leg. When I parked the car, he actually had to help me walk until my dad could get there. I never imagined that this condition would impact my life so much.

    What I am needing is direction–advice on how to find a doctor that cares about this condition in adults and knows how to deal with it.

    It is so nice to know that there are other people out there dealing with this.

    Thank you.
    Katie Berry

  5. Bonnie says:

    Hi Katie,

    Thanks for sharing your story. I have a question for you. I just turned 43yrs old and have been having hip problems for may years. Went to be seen by PCP, had xray which showed I was fine according to them but now my right hip area is much worse. When I sit with my knees bent and try to get up my right hip is locked in place and in incredible pain like it’s dislocated but if I move a certain way and try to relax as best I can with the pain it works itself out and I can move. I’m getting better at knowing what I can and can’t do. I’m active but have slowed way down because of the pain. I always thought don’t stop or you’ll get worse. Now not so sure. Does this sound familiar. Does your hip area ever get stuck in place and have incredible pain that you can’t control. My right groin hurts all the time too but I can take that. Also when I run down hills my Left hip buckles from under me and I catch it with my other leg so I’ve never fallen but hurts like hell. Good to see other women have similar issues that doctors don’t seem to have answers for. I’ve already been to the podiatrist who made arch supports for my one flat foot that haven’t helped only gives me blisters on one foot and a chiropractor who said my spine is fine. I don’t have much faith in specialists unless they order the right tests which they usually don’t. I’m a nurse too. I hope you can help me diagnose myself. Thanks for reading this long message. Wish you well and pray you feel better soon.

  6. Alicia says:

    Hi my name is Alicia and I am 25 years old and 2 years ago in 2011 while I was going to beauty school I notice a pain in my right hip. At first is was only at the end of my day that I had pain in my hip but after about a month it got much worse where I could walk but not with out a lip. not to short after I had to take a leave from school which my school was not so understanding of what is was I was going though. I soon went and made a dr apt with an orthopedic dr who diagnose me with hip dysplasia in both hips. from there he sent me to a pt for about a month and after that did not do anything for me but give me more pain I was then recommend to have a hip arthroscopy on my right side of my hip this is where they go in and shave the bone down so I had it done and the recovery is very painful it 6weeks on crutches and 6months recovery time after going through the surgery they sent me back to pt which only made the pain worse I also now have permanent numbness on the top of my right thigh. I went back to my surgeon and told him I was not feeling better he told me that there was nothing more he could do for me. after this happened I seen about 10 other drs which all of them told me the same thing to ask my self if this is something that I can live with because they had no answers for me all of them acted like I was lying about the pain in my hips this was june 2012. Being left with no answers and not able to walk with out a cane or have to be in a wheel chair and not being able to even walk in a store of my children to school I had to find answers I did some research and found a orthopedic pediatric dr that knew exactly what I needed and after 2years of going through all of the pain and the feeling that nobody believes you and giving up school and most important not being able to be there 100% for my 4 children this dr gave me back hope so this july 2013 I will be having a PAO and all I can say now is wish me luck! and to everyone out there who may feel like its time to give up or no matter what drs say this something you do not have to give up your life you can find answers you just have to have faith and hope.

  7. McKenna says:

    I was born with bilateral hip dysplasia in 1971. I too had to wear the brace and endure traction as a baby. I was o.k. for 36 years until I started to feel pain in my left hip increasingly getting worse. I had recently gained 30 pounds. I am a N.I.C.U. RN, and was sprinting around with 12 hour shifts for 13 years. After experiencing this pain for 4 years now, I’m certainly not sprinting anymore..I can barely get out of my chair and I have had to give up my horseback riding and any activity more than a few minutes. If I take hydrocodone I end up moving more, but when it wears off…LOOK OUT! SEVERE PAIN FOR DAYS! I was told that at age 40 I was too old for a bilateral PAO. I was also told that at age 40 I was too young for a hip replacement because revisions and replacements of the replacement over the next 25 years would more than likely land me in a wheelchair by the time I was 65 or 70. My orthopedic surgeon uncle also suggested I wait on the replacements as they just haven’t developed the proper hip replacement parts that last. I do have labral tears but again was told not to have the surgery because they would develop again in 3 months. I tried the very expensive injections…no relief. I’ve tried yoga, swimming, and PT…worse pain! I have severe depression, have lost relationships, I’m gaining weight daily due to my inactivity and stress/sadness eating. Aleve does not work…and just when will I start seeing kidney issues? I have been on 800 mg ibuprofen for over 20 years for back pain before all this hip pain started taking place! Surely I’m setting myself up for organ failure in the future. Now my right hip is acting the same as my left hip did a few years ago. My boyfriend has no earthly idea the pain I am in all day long, and wonders why I can’t join him for a nice walk around the lake. I truly believe he thinks I am faking the pain as a lot of people do including many doctors. When one realizes that a doctor doesn’t even believe your pain, something inside you gives up. It’s absolutely barbaric behavior toward a patient. Glucosamine and MSM does not work. I am however, going to try the avocado oil supplements next. When I tried acupuncture in my twenties for back pain all that it did was to move my pain around. I am desperate for help. I am desperate for even 10% of my life back that I use to have. Has anyone else been putting off the hip replacements and enduring this pain? Have you had doctors tell you that you too should wait? I absolutely hate my life now…how does one cope!

  8. Emelia Depottey says:

    I have to say that for the last few of hours i have been hooked by the impressive posts on this website. Keep up the great work.

  9. Carrie says:

    Which MD did you use in Richmond, Va? I am close to there and looking for a hip dysplasia specialist. Thanks!

  10. Nancy Johnson says:

    Dr. William A. Jiranek M.D. with MCV/VCU his number is 804-228-41555.

  11. Nancy Johnson says:

    804-228-4155!!

  12. Chris Johnson says:

    Hi McKenna
    Considering how your life is being affected now, I personally would opt for the ceramic cement less hip replacements which are reported to have the longest life.
    In 15-20 years time, new technology/solutions will be available so it wouldn’t worry me.
    I am 39 and have just had a PAO on my right hip, was this not an option for you? You are not too old! But if you have too much cartilage or joint damage it won’t be a benefit to you.
    Kind regards
    Chris

  13. Allie says:

    Hi McKenna,

    My story is very similar to yours. We are similar age and born with hip dysplasia. I was treated as an infant and did well for about 34 years. I have lived with chronic pain for 3 years. The difference is that I have had many compassionate doctors (I have seen 5 surgeons to ensure I am making best decision) all suggest the same thing- total hip replacement. The only thing they have all said, they will do it when I am ready. They will not tell me when. It’s up to me. I can’t take it anymore and will be having hip replacement this year. I have an uncle that had a hip replacement at age 40 and has done very well for 15 years. He said it is life changing. He said you literally wake up from surgery without the hip pain. I have met several people with hip replacement since my issues with my hip began and all have said the same thing. Don’t wait too long… it is so much better after the hip replacement. Where are you located? If you are anywhere near Atlanta, I can recommend 4 surgeons that I have seen that will happily give you a hip replacement considering your pain and condition. I will pray for you. Stay positive. It will get better!

  14. Linda says:

    Hi McKenna, I had my new hip put in at 48. I was in pain for years. I went undiagnosed for about 5 years. If they had found out sooner perhaps I could have avoided my back surgery after the hip was replaced. In four years time my back degenerated and stenosis had set in. I understand your concern and being young. I will say the new hip is great. Other than occasional bursitis it is doing great. My advice find the best surgeon in your area. Now my other hip is giving me problems. They told me I have to wait until it also degenerates before they’ll replace it. I wish they could do it tomorrow. Wishing you all the best. Keep positive!

  15. Elizabeth says:

    Hi, my name is Elizabeth and I am 23 years old.I was born with chronic congenital bi-lateral hip dysplasia. I have had 7 surgeries, the last being osteotomy with a PFO/PAO at the age of 16. They said it would take away my pain in my right hip. Well unfortunately it did nothing for the pain, but they were able to get the ball covered by the socket really well. My left hip is still partial dislocated, since I’ve never had surgery on it, only a closed reduction. I am now 7 years post op from my osteotomy and experiencing severe pain in my right with pain becoming worse in my left. I was told I need a reverse osteotomy on my right. Unfortunately, my hip dysplasia has caused my knee joints to go bad and the bones to overlap in both of my feet. I read your story and im glad you were diagnosed and were able to get relief. I am looking for someone or several people who have experienced what I have to be able to talk to about this. Unfortunately there is not alot of people with severe hip dysplasia like mine, and no one understands what I am going through, especially not my 2 year old son :(. My email is lizzie30002004@yahoo.com if you would like to message me and talk.

  16. Louise Am says:

    Hi..new to this..I don’t knew what’s up.my right hip feels like its ouuta joint .sex yes embrassing have to stop.has goes out of place feeling ..pain full.my leg is longer then other..I’ve had tuns of MRIs.has o8 told I’ve DDD.. But didn’t knew were pain was from..they operation on back..told I’ve spine of 66 year old.now 38.. Was 32.. Last scan..showed disc out..complete out on my s1 nurve..very pianfull..physio said normally happens to bodybuilders??? Turned down my op..has LST left worse..any way hip makes poping noise ???even phsio said my hips twisted???..also waiting to see if I’ve a.s..arthritis.. Have ms simptons too.crawling..ribb hugs??advice ???going nuts..can’t walk today hip killing louisex

  17. Louise Am says:

    Any advice my e mail is Amos.louise@ yahoo.com..

  18. Lee Gibson says:

    I am 59 yrs old have wondered why I have always had limited mobility or range of motion. I have never been able to sit “indian style”. I got curious looks in school when I sat the only way I could which was flat on the floor with my legs together bent at the knees and my feet beside my hips. Also I can’t open my legs very wide.

  19. Nikki says:

    OMG Lee! That’s a light bulb moment for me. I always sat “like a frog” at primary school and was told off, but sitting cross legged was uncomfortable/painful for me. Just found out I was born with bi-lateral dysplasia and had splints for a month. Now 46. History of 17 years of back spasms/pain sending my right hip sideways – no doc has ever mentioned hip dysplasia; never occured to me either. Thank God for this site. Told had DDD, then osteoarthritis (apparently same thing), steroid inj in back and left shoulder. My pain is liveable with but I live a restricted lifestyle as frightened to put “back” out again. PT says nothing wrong with me, get on with it! When I did I hurt my back. Losing trust in so called professionals. Suspect I could have adult hip dysplasia, will try to find out. Thank you to everyone for their invaluable advice, experience and amazing positivity.

  20. Nancy Mosley says:

    my hip feels like it is totally locked up i try to get out of my chair and it feels like im falling flat on my face i do mnot know what it is coming from i wish i did it is so painful.

  21. Jamie says:

    I was born in 1977 with double hip dysplasia. I had a cast until I was 18 months old. My parents were told I would not walk. However; thankfully that was not true. I have had alot of pain in my hips since I carried my son and had a cesarian back in 2003. In the past few years my left hip has become so painful I am not quite sure what to do. Basically I am in the same boat as most people here and I keep running into closed doors for help. It seems that this issue is not resolved when we are treated as babies (as they tell our parents)… any help or advise would be very appreciated. My email is: mccardle77@gmail.com

  22. Mary says:

    My name is Mary. I am 36 years old and I was not born with dysplasia. I am also a nurse. I am on my feet a lot. My hip is stuck and sore and it pops when I walk. I am active and healthy. I am scared because this I cannot let this affect my life. I have two kids that need me. I don’t know what to do? Where do I start to look for answers.

  23. heather says:

    Nancy, hello my name is heather miller and i had the same exact surgery by the same exact dr. Can you email me i have a few questions i wanna ask you

    heathermiller_3@yahoo.com

  24. Krista says:

    Hi there. I was diagnosed at 37 as well and had a LPAO and scope on June 27th of this year. I felt the same way with limited interaction from my coworkers after surgery until I came back to work 4 months later. I’m 5 months out now and at 8 hours a day but unable to perform my duties as a Veterinary Technician as I can’t bend or lift right now. I have a nonunion of my Pubic bone similar to yours. Has yours healed? I have had a lot of pain since surgery and it has been worse for the last month. I had a cortisone injection in my hip joint last week which made it feel great for a few hours and the next day and now the pain is coming back already less than a week later. I’m definitely getting lots of issues from coworkers at work who think I’m faking or not as sore as I am. It’s been horribly difficult. My email is kltinmn@gmail.com I have found the PeriAcetabularOsteotomy site on Facebook to be wonderful for advice if people are looking for it.

  25. Liz Gage says:

    I am 62 and just diagnosed with retroversion hip dysplasia with axded impingement syndrome. This is after 4 yrs of hip and back pain. I have seen many ortho docs and even had a complete hip replacement 2 yeRs ago for labral tears, impingement and arthritis. That gave me wonderful and immediate relief on the left side but since the. my right started locking and in reased in pain so much I needed a walker to just get around at home and I hardly left the house. About 2 mo ago I gave up on western medicine and tried acupuncture. After about 4 treatments i ould walk again unassisted but I am still limited so I found a new orthopedic dr. In dallas who does hip repairs (dr. hal martin). Within 20 min he and his residents were able to diagnose the retroversion on exam only and then ordered a mckibbins mri to measure the retroversion. End result is since im 62, live alone, and have already had a successful replacement on the other hip he sent me to a colleague who agreed to just do a replacement even though by normal standards most would not. The recovery is much faster and easier for someone who lives alone with a replacement than the repair would be. Also asince the retroversion / rotation is so posterior a repair would not probably result as well. I am now waiti g for the two doctors to consult and also tell me the exact amount of retroversion that the mckibbins mri showed.

  26. elena says:

    Hi Nancy,

    Thanks for sharing your story, I live in Durham, NC and it sounds like I’m trying to sort out many of things you’ve been through. I have EDS, and for the past year have had horrible left hip pain and can’t stand or walk for long periods. I finally was able to get my insurance company to pay for an MRI and was diagnosed with hip displasia and a labral tear. The surgeons that I’ve talked to around here are all from sports medicine and dont’ really seem to know much about EDS. How has your experience been with your guy in Richmond? I’m looking for some 2nd and 3rd opinions….. I just want to be able to hike again. I’m 34 and have less mobility than my 80 year old father in law.

    Thanks for any thoughts or referrals on this.

    Elena

  27. Tammy says:

    Hi my name Tammy I will be 46 next month. I suffer with hip pain it started in the groin and now it is more my hip. I have went to doctors and specialist and all I am told is that because I have a bulging disk in my back is what is causing me so much pain. I have had steroid shots which help temporarily. I am to the point of going crazy with dealing with this pain and no relief. As I have been reading through the comments a lot of the systems that others are dealing with is the same as I deal with. How can I get the right diagnosis? What type of doctor do i need to see to help me. Thank you for any thoughts or ideas that can help me. Tammy

  28. Ashleigh says:

    Hi my name is Ashleigh, I will be 25 year in May. I had been having severe hip pains since I was 20 years old & the Doctors kept had turning me away, sending me to physio & whatnot until they did an MRI & discovered I had severe hip dysplacia. After 2 years of my first surgeon stuffing me round he put me through to another surgeon who does pao surgerys. After 6 weeks my first pao hip surgery done ( may 2014 ) I have to admit I really struggled pain wise & within the first 6 weeks was undergoing another operation for there stuff up by putting a bolt into my joint. 3 more operations later & im still in so much pain & can barely cope & I still have crutches & can’t walk !!! 8 months post op. I definitely know how it feels to not be believed when you say how painful something is, or you limo & people think your lying. Maybe they should walk through our shoes & then they will understand until then they should just shut their traps :) thanks for sharing your story Nancy, it’s nice knowing that I’m not alone going through all this & people out their know how it feels & what I’m going through x

  29. Loren Murray says:

    Hi i have had pain most of my life hip every sence i can remember never realy new why even when i was very youg getting down on my hand and nees my hips hurt off and on all threw my 20s coming home from work and having to sit in a hot bath to help with pain thouth it might have been from engery i had at 15 years old and years of going to doctors and ciropractor still have no answers the pain is so bad i just cant stad it any more the last seven weeks has been the worst for hip pain started in left then to back across to right hip last year the same thing around the same time every year getting worst pilow between nees at night not sleeping very well my dad had really bad hip pain his hole life with no releaf my nees have always hurt with mris with no results always poping if i sit in a car for any lenth of time my hips pop when i try to get out now at 44 the pain is so bad i can hardly walk just dont know what to do anymore it sounds like hip dysplacia like so many other people have that has gone misdiagnost when you sit and cry from everyone thinking you are crazy insted of for the pain the last two years the pain starts in laft hip gos into back then back into hip back and forth over weeks then seem to move to right hip my whole life has been of pain and going to doctors and getting no where it is so depresing just dont know where to go from here

  30. Misty Covey says:

    My hips have hurt as far back as I can remember. In highschool just climbing stairs to the third floor was horrible. I also have Ehlers Danlos and could always clunk my hips out of joint just by moving my legs. My naturopath adjusted my hips. He said one was tipped forward and one back. He was first person to even treat it. Recently now my right hip hurts when I walk to the point I’m limping more than usual. Everyone always asks if I’m hurt. After 15 years of that question it gets old. Some days I don’t limp. I just stated being a server at 39. The incredible limping waitress. I can walk circles around everyone and I’m a hard worker but after about 3 hours I’m dragging. Without pain medication I’m useless. With my stomach issues I can no longer take Ibuprofen, aleve, celebrex etc. Thanks for the information

  31. marie ireland says:

    i am 74 yrs and i only have pain in my groin sometimes when i am walking .its in my right groin and when i try to walk up stairs .it feels like my leg will go from under me could it also be from my hip /??

  32. marie ireland says:

    i am 74 yrs i only have pain in my groin at times it catches when i am walking and also when i am going up stairs but my hip does not hurt but sometimes my back does i have done physo but it only helps a little

  33. Emily says:

    Hi I live in the UK and have bilateral hip Retroversion which was diagnosed at the age of 14. I was told then that my options were corrective surgery or a hip replacement which would probably be before I was 30. I am now 29 and have had xray guided injection into my right hip which lasted around a month. I am on Butrans patches currently 10mg which is being increased plus around 6-8 30/500 CoCodamol tablets a day. I have my next appointment with my hip surgeon on 15/07 yet just feel like he god me off at every appointment. I am thinking of buying a wheelchair as I suffer walking and can only stand for a short while before being in pain. I am a mother of 4 and can’t do all the running and playing that my kids want to do. Just wondered if any of you had any advice. Please mail me on squembot@hotmail.co.uk

    Many Thanks Emily a fellow sufferer.

  34. Mel says:

    I’m 60 years old and was diagnosed with hip dysplasia in both hips about 4 years ago. The pain got progressively worse and by October 2014 I could barely walk and could not do my job as a teacher being on my feet all day. I couldn’t even sit on the carpet with my class. My first surgery was December 2014 and by 6 weeks my hip was dislocated and I had to have revision surgery in February 2015. The surgery was brutal. Seven hours long and 6 units of blood and was in rehab for 3 boring and lonely weeks. I was told to stay off my leg for 3 months and was stuck in my house upstairs because I could not walk. Well it’s been 6 months and I am still wheelchair bound and so discouraged. Evidently, my pelvic bone is week and does not hold the replacement. No one had answers for me and I’ve been forced into retirement and haven’t walked in 6 months waiting for bones to strengthen. My doctor never talked about any of these complications with hip dysplasia before surgery as he believes that the hip dysplasia wore down my pelvic bone. Worst part of all this is that my other hip is so painful because of all the weight put on it. I cannot have that hip replaced until right hip is healed and my bones strengthen. I’m a mess! Does anyone have this problem or any advice or know a doctor who might specialize in this? I need to get back to my life. Been on calcium and vitamin D forever doesn’t seem to be working.

  35. Rachel says:

    I am 34 years old and have been diagnosed with bilateral hip dysplasia and hyper mobile joints. Basically shallow joints that move around more than normal. Because of these issues my joints are wearing out pretty fast. What I have done is show friends and family what happens to dogs when they do not get this issue treated. The dogs lose the ability to use their hind legs. It seems to be working. It gives them a better understanding of what is going on with me and what is happening to my joints. I am slowly losing the ability to use my legs. That is what is happening. What I find frustrating about the stories I am reading and from personal experience is the temporary fixes the Doctors are trying that are only masking the real issue. I honestly think having as many of your own body parts is much healthier than having it completely replaced. Which is what will happen if I don’t do something now.

  36. Robin says:

    Hi, I am a 48 year old runner/hiker who had 8 years of pain while continuing to run/hike. Stopped running in Nov. after adopting a rescue puppy and cold winter. Decided to start up running again in April, and at the end of my run, felt a pop and burn. Walked on it over a month until I no longer could do hills, then stairs, then walk. After x-rays, I had 2 fractures and 3 torn tendons. After MRI, severe hip dysplasia with very shallow socket. Was told by local doctors they don’t touch the socket so a hip replacement wouldn’t work and my hip would dislocate more often than now. Found doctor in NYC would preform a total hip replacement along with socket revision. That was 2 weeks ago. During the surgery, my femur was fractured so I am on crutches for 4-6 weeks. Hopefully everything will heal well and I will be able to get back to my active lifestyle. Anyone else with simular experiences? Fractures during surgery? Will be checking on my bone density hopefully. I see the doctor next Monday and I want to prepare myself with questions. Also, any good experiences? I had them put in a dual mobility Striker Hip because it sounded like it would be the best for my lifestyle. Thank you in advance!

  37. Cindy brown says:

    The part about employees sounded like my story. Dr still working on my situation.

  38. Erin says:

    Hello, I was born with hip dysplasia and had been in contraction at a year old and then a cast from the waist down for a very long time. When I turned around 35 I the pain in my left hip started to become worse. Over the years (I am 46 now) the pain grew much worse. Every year was worse than the last. Eventually it came to be that I could not walk for more than 10 to 15 minutes without sitting down. I could not sleep due to tossing and turning from pain all night long. I could not do much of anything that took too much activity. My life was becoming very depressing. By this time I was on Norco (8 per day), ativan, cymbalta (for depression), ibuprofen (6 per day), trazadone for sleeping, adderal to help me get going in the morning because of fatigue that kept me up. At night from hip pain. My whole body suffered from this because I was always compensating and putting more pressure on otherbodyparts to help relieve the pain. I also limped when the pain became too great. I had been told by my Dr. That I needed to wait as long as I can to have THR surgery as I could end up in a wheelchair too early. A couple of weeks ago I asked God to give me an answer as to when it would be ok to do the surgery. Mind you I had always been terrified of surgery and was ok with putting it off for much longer. The pain was just constant though and that is why I asked God. Well, two days later I did a minimal task and the pain that coma from that was excruciating. I took that as God saying to go for it now. Since then I have been to see my Ortho Dr. and have scheduled my surgery. It is on Tuesday Sept. 8, 2015. In just 3 days from now. I cannot believe the peace the Lord has given me about this surgery. Not a worry or concern has come to mind. My decision has made me feel almost free because I finally have hope insight. Its a weight off my back and I’m not going to let hip dysplasia run my life anymore. I want quality of life now and not when I am too old to do most stuff. I have talked to alot of people who have had their THR for 20+ years and continue to do well. I say make your own decision based on what you want out of life right now and be faithful that God will carry you through. He has been my strength during the last several years. He is the One that encouraged me, through His Word. I will let you all know how it goes but make no mistake, this girl at age 46 is taking her life back. You too can do this. Find your strength in the Lord. He is sooooooo good and His love endureth forever! God bless you all. Love, Erin

  39. Stephanie says:

    For the last 5 years I have had severe pain in my rt hip, seen many specialists, had injections,went to PT, MRI, XRays, you name it I have gone through it and this just in 2 years when I couldn’t take it anymore, I work retail and stand on concrete all day, One specialist diagnosed me with Ehlers Danlos Syndrome, OK ??? So they said the pain I was having was because of this… The MRI showed a torn labarum, which I had underwent surgery for in Feb 2014 did 2 whole rounds of PT returned to work 4 weeks post OP, you can’t really gage your recovery in that short of time seeing that it takes 6 months to a year to know if it was successful, I knew 3 months out something still wasn’t right thats when my ortho had me do my 2 round of PT, my therapist said you ate not progressing so you need to discuss with your or tho the next step, he told me there was nothing else he could do for me and to go back to my family phys to get re referred to another ortho. So I was back to square one 10 months of work and pain later another MRI, to see that my Labrum was still tore. I bounced around for the next 5 months trying to find a surgeon that would help me, finally my insurance co. Found me one and I’ve had the 2nd Arthrocopy surgery to fix my labrum clean out floating debris and remove the bursitis that was so bad the doc said he doesn’t know how I was going on day to day. Well I’ve started PT once again and I am 1month out post op, once again I am in agony had to stop PT and have been put on bed rest til my next Dr appt across state next week.
    Any other suggestions or similarities, would be helpful, just to know I’m not alone. I am literally in tears daily the pain is so bad, and I am to return to work, what to do, I’m frustrated and losing faith.

  40. Rose says:

    To one and all who have written about severe and disabiling hip/pelvic pain! I work in a job here in Canada which requires much repetitive movement along with various body twists, turns, lifts, and other rigours. Was injured (i was told it was internal hip derangement) October 20th of this year and am finding that I have to learn new ways of doing everything that was so normal and fun to do before the injury. Life has slowed right down – t’is very hard for this full-of-life Irish girl (turned 58 june 11th)! The rethinking of almost every action or step I take is frustrating, energy-consuming, and down-right ‘not fun’! I find this to be a full-time job with the only benefit being less episodes of left hip/leg lack of use and excruciating and disabiling firey pain. I am in physio, on muscle relaxants/pain meds and have a reduced work load yet the episodes of disability and pain still occur whenever and without warning. Like each of you I seek onward – praying and believing for me and you! God bless each of you on this day and thank you for listening.

  41. Sarah says:

    Chiropractor and foam roller and strength training!!! For those with hip dysplasia diagnosed later in life (30 for me), I also have a labral tear and possibly more degeneration now (7 years later).

    The only way for me to reset my hip is by chiropractic help and in between using the foam roller (this helps reset it). I’ve done bodybuilding.com programs and strengthened all the muscles surrounding the dysplasia and tear). I will have to one day have a hip replacement, but I’m hoping to hold out until then. It’s tons of work in the gym but It definitely improves quality of life. I have three children and my last child has created a massive increase of pelvis instability, but surgery will have to wait in my case!

  42. Karen says:

    It’s been five years of pain, orthopaedic docs, neurologists, rheumatology docs all saying there is no official reason for the pain. It has been confined to my left side and through thereoutic massage I have learned to manage the pain somewhat along with simply limiting activity compared to how I used to rush around. Today the pain begin in the opposite side and I sit here trying not to panic at the thought of this “moving”. I don’t even know where to begin- call a doctor? Orthopaedic? My massage therapy appointment is a week from today but I’m so scared I won’t be able to walk or that something really terrible is wrong with me.

  43. dean says:

    i shattered my pelvis in 1977 motor cycl accident they patched it up best they could i was 17. by the time i was 31 i could hardly walk the pain was terrible result was total hip replacement on the left side. i got on with my life working as a mechanic and racing speedway sat nights and in general not looking after it as i should but i was pain free.now aged 55 the hip has been in 23 yrs and is shot the pain in the back of the hip keeps me from been active even slow release morphine capsules twice a day dont help im just waiting to get in to see my surgeon but its a 4 month wait .
    im hoping it can be replaced and make it pain free again ..

  44. Raechel says:

    Hi all I’m 46 I have hip dysplacia only diagnosed this year even thou suffered for years; I have my the dated January for my operation,feel a bit anxious have been in a lot of pain but now I have a date my pain is not so intense I think I have scared myself with the operation but the back pain is bad last few days, has this happened to anyone else; its like having tooth pain get to the dentist pain stops you leave to go home and the pain is terrible..I feel this is what I’m experiencing to be pain free soon will be good x

  45. Len says:

    To anyone that had a PAO I was wondering how much time it took you to heal? I am only 23 years old with bilateral hip dysplasia. (I’ve also had 4 ankle surgeries so I am not new to the surgical world). About 4 and a half months a go I went in for the Labral repair and two weeks later the terrible osteotomy. The pain was so herrific I can’t even put it into words. My x-rays are still not looking so well- by bone is either not healing or just not making enough progress. I still cannot work or do anything. Showering and sleeping are still chores. I’m still using crutches but limp around my house. I am soon to try a special ultrasound machine that will hopefully help. I am so desperate. Every surgery I have had, always gives me complications. I don’t mean to scare anyone because the success rate for this surgery is really good, especially for young adults who are trying to put off a hip replacement. I just wanted to know if anyone was still not healed at the 4 month point.

  46. Nancy Johnson says:

    Len By my 4 month my healing at the break point was visible but slow. I was out of work for over 5 months and really could have used 6. I used crutches for over 5 months. When I would try and walk I could feel the break moving or rubbing back and forth. Are you trying to rush your recovery by trying to be more mobile than you should? I know that I am so independent so I tend to push things because I so tired of being tied down. Sleep is very hard as you have already discovered. I slept on my back or opposite side but that go old and quick. My PAO was done when I was 37 which is older than most like to do the surgery. My PAO was a failure. I had a total hip replacement July 23, 2014, it took me over a year of true healing before I could truly say I am glad I made the decision. It is the best decision I made! I am still very tender where my previous hardware was and I believe that will get better over time. Hang in there. Every body is different.

  47. Nancy Johnson says:

    Raechel Did I understand that your PAO surgery at age 46 is approaching soon? No disrespect but am surprised you are having this surgery at your age. I was told 40 was the cut off. Even when I was it the hospital many nurses said WOW your really too old to have this surgery. My PAO was a FAILURE. I had a total hip replacement July 23,2014. It was the best decision I ever made. I believe it was a failure because I was too old. I am currently facing a knee replacement and when I explained my surgerical history the surgeon was surprised that I had had a PAO at 37. I know many who had it in their early 20’s and they fared far better than me. Have you donated your blood yet? It was mandated that I have 3 units. I needed only 2 units. I was in the hospital 4 days. I had a hard time with pain control. I had a PT who didn’t understand that I had had my pelvis broke and thought I had had a hip replacement.I sincerely wish you all the best.

  48. Nancy Johnson says:

    Dean I am sorry your are in so much pain. I have been on a Fentanyl patch for several years and it has done wonders for quality of life. I also have a painful chronic connective tissue disease Ehlers Danlos Syndrome. I DO NOT recommend doing any higher on narcotic doseage because surgeons complain it makes your pain control and recovery more difficult. I had my hip replaced in 2014, and I had poor pain control. My surgeon only approved my baseline pain meds dosage which did nothing for the surgerical pain. I cried from the time I came out of recovery until I was released. I was only in the hospital 23 hours because it cuts down on infection. It took me over a year post op before I could truly say I made a good decision about having it replaced. I hope your time goes by quick. Have you asked the surgeon’s office if they have a cancellation list? If they do you might be able to get in sooner. I wish you all the best.

  49. Nancy Johnson says:

    Karen sorry for the delay in writing. I have been struggling with an insurmountable bout of fatigue and was just diagnosed with Sjorgens. Has any of your specialist ordered an MRI/MRA of your hip? This is where they inject a small amount of radiographic dye or constrast into the joint space. The dye is injected by a fluroscope that guides the doctor where they are placing the dye. I have had 3 and some doctors do it and you feel just a pinch while others hit the acetabulum or the bone of the hip with the needle which is painful. After the dye is injected they have you walk to the MRI table to get the dye evenly distributed through the joint. An MRI can show quite a few things such as and labral or tears to the cartilage, FAI or Femoral Acetabular Immpengment and it allows the doctor to determine whether you have a retroverted acetabulum like I had. All of this is important and should be done since you continue to have pain. I wish you the best of luck.

  50. Karen King says:

    Would love to know the name of the doctor in Richmond Va.
    I live in the Williamsburg area and it is hard to find physicians who are well versed in Congenital Hip Dysplasia. Long story short……I had surgery at 6 months of age (1962). The doctor just thought the hip was dislocated and went in to put it in the socket. In college my hip began to hurt again and it was decided to do an Chiari Osteotomy instead of total hip replacement. Now progressive pain and I am considering a total hip replacement.

  51. Stacie says:

    I am 42 and have been experiencing severe sharp pain in both inner hips. I thank you for this post. I have not been to doctor yet. What can they do, right? People who dont experience this pain really dont know how to sympathize. So, possibly dysplasia. Somewhere to start. May GOD ease our suffering.

  52. Alison says:

    Hi there. Thanks for your story.. I was diagnosed with a conjenital hip when I was a baby. My treatment of 3 months on traction then three months of pot was unsuccessful. This was continuous back to back until I was 2 years. I was then left until 2 and a half year before operation. I am now 40. My hip is absolute agony. I am a fitness instructor which the consultant could not believe as he said he expected me to not be walking at all after seeing my X-rays. I am waiting for a replacement which can’t be done the usual way as it may have to be put in under my bum cheek!! I also have to have a hip specially made. I am taking very strong pain killers and it’s hell to be frank . I have three boys too. All natural births with no problems. My eldest has got the same although his was never treated due to it not being bad at all. He’s 21 this year and showing signs of pain only lately. I am currently off work for two weeks but I feel guilty for taking time off.. As you say it’s difficult to show how much pain you are in and what’s going on so I feel the guilt!! I don’t know how long I can carry on in so much pain when I go back to work!!! Two weeks off is enough for the looks of disapproval but asking for more seems impossible. Hope your work colleagues do not suffer in any way themselves and find themselves in the same situation hey. Chin up!! All we be ok. Thanks again for your story… Alison

  53. Dawn says:

    Hi I have had 2 hip scopes on right hip for fai and continue to have issues. I am 53 and sin the past 10 years have had about the same number of ortho surgeries. Torn tendons , ligaments and cartiledge. It is very frustrating and now have weakness in my right leg after a fall. I have wondered if there is som thing else going such as ED but not sure who would be able to evaluate . I do see a rheumatologist and have inflammatory arthritis as well

  54. Sean says:

    My partner was diagnosed with EDS a while back after not being believed by doctors who thought her pain was exagerrated. Shocking also how little awareness of the condition amongst the NHS here in UK as with other places even once it is diagnosed. My partner was told she had hip retroversion and labral tear also impingement. 7 months ago she had a triple pelvic osteotomy as well as a right femoral osteotomy together. She is in constant pain regardless of what position she sits or lies in and still relies on crutches to get around. Understandably she is very down and dreading more surgery but we both remain hopeful some improvement will come. I have utmost respect and sympathy for all who are going through similar troubles, incredible strength shown to persevere though you may feel weak.

  55. Clare says:

    Hi all, very interesting reading all of your comments and so sorry for all of your pain. I am 46 and was born in the UK in 1970 with both hips dislocated (which was not discovered until I was 2 resulting in deformed femurs and shallow sockets). Usual traction and cast/brace until about 4 years. At 8 I had an osteotomy in both legs 2 weeks apart followed by removal of plates at 10 years. At the age of 14 after my growth spurt it was confirmed they had shifted slightly and my doctor advised I would need a THR in both legs by the age of 30. I did very well with little pain until I was 39. When the pain started affecting my daily life I saw a surgeon and he said he would replace the hip if I was ready. I delayed about 6 months and then thought SOD IT .. I’m doing it!! It went really well and recovery was a breeze, less pain straight after the op than what I was in before, a complete life changer! 7 years later and I am getting the other one done shortly, I can only pray it goes so well. My thought pattern and that of my surgeons is ….. yes this is elective surgery and things can go wrong. Yes I may need revision surgery BUT I am young now, I don’t want to be hobbling around at this age. Who knows what the future will bring and I am not worrying about that, you don’t know if you will be fit and healthy as you get older. I would thoroughly recommend having the surgery and getting your life back now. They are not going to get any better and pills and all the rest of it just don’t work and reck your body.

  56. Rachel says:

    Hello.

    My name is Rachel and I am from the UK, I am only 24 and been diagnosed with retroverted hips and impingement. I have been told I will likely need PAO as now under a specialist in London.

    I am genuinely quite scared about this and reading your story that it has taken you so long to recover for one hip definitely makes me wonder whether I need to go through with the operation- as both my hips are bad! I have been trying to do my research about PAO and got a lot of different stories- one that its a major op and then 2 a completely different side where its no longer invasive. Confused.com!

    I am concerned that If I do not have this operation while I am young on both hips then it will lead to me needing a total hip replacement but it means that at 24 i’ll be completely unsociable! No one I know has ever had it done and a lot of people I tell do not know enough about it to see how serious it is. I feel a little lost and alone as silly as that may sound ha! would appreciate some advice or guidance. Much love! xx

  57. Altaira says:

    I was born with hip dysplasia, so when you speak of having to walk feeling like a “chore” yes. My hip has no cartilage,and is bone on bone. It gets very hard to even go check the mail. I’ve had the cortisone shots, but they just made the pain worsen. I’ve been to physical therapy, nothing seemed to work or ease the pain. I’m still waiting for a referral to see an orthopedic in my area.

  58. Ashley Hackworth says:

    Hello Nancy,

    My name is Ashley and I am 26 and was diagnosed at the age of 12. Though my surgery wasn’t done correctly so I have some difficulties but I can tell you it does get better. It just takes time and strength building. Pilates are my best friend because it tones. Strengthen and aligns your body. With doing that the stiffness has lessen and I at first was able to work 20 hours a week. Now I am able to work 30+ and I have found bosses that work with me if needed. It does scare people but when you explain it they do eventually understand.

  59. Teir Renae Morris says:

    I have been diagnosed with hip dysplasia just a little over 8 months ago. I have pain daily and its worse at night i just wanna give up working cause the pain is unbearable sometimes and i just want to cry. I suppose to have a total hip replacement done soon and i really hope it works. My job is no help they dont seem to care and honestly i just want to quit cause walking has become a task and i just feel down cause am not normal

  60. Carly says:

    Hi im 32 and was diagnosed with bilateral hip dysplasia as a baby. Full casts, braces, frog plasters etc held my walking back as an infant but after that i lead a very sporty childhood painfree. At age 16 i had increasing pain in my right hip to the point i couldnt lift my leg and underwent a POA at aged 17. Major surgery and year long recovery with physio etc the result was pretty good. Much improved from pre-surgery. Unfortunitly over the last 6 months i now have a labral tear in my left hip and both hips are now painful. I cant sit long and am crippled after sitting or walking but otherwise not bad. Saw surgeon again last week who said theres no point fixing the labral tear as it will tear again due to the dysplasia. Hes happy to do a POA on my left but i dont feel my right hip could carry the weight on crutches for 3 months. Also with 3 youngish kids i couldnt imagine going through that surgery with kids to care for. So next option is wait till im 40 and get bilateral replacements. Seems like a good idea if i can keep walking till then but very much doubt ill last 8 more years on these hips lol. Im happy enough though with my hips, ive accepted its just part of me and my anotomy People have much worse things than this so ill keep marching on. I do look forward to replacements at 49 as have high hopes i may be able to tramp again and have no pain in general daily tasks. Fingers x”d.

  61. Briana says:

    I am 24 years old.. I have two children and one on the way. Ever since I had my second child by c section in 2014 of march I have had had severe hip pain in both hips. I thought I could deal with it that it was my hips just adjusting to not going through actual labor but it’s only got worse. I have literally fallen down sometimes walking or not been able to move for long periods of time. Over the summer of 2016 I told my regular doctor and he suggested a muscle relaxer. That did not help at all . I went back because it got worse and he referred me to a hip specialist. Before I seen the specialist I found out I was pregnant with my third child. I’ve not had much probl r ms but now that I’m further along and bigger it is unbearable. I can’t move it feels like knives are staying me. I don’t know what to do honestly. Do I go to the hospital? I can’t get x rays because I’m pregnant. Which is why the specialIstanbul wouldn’t see me before. I’m at my last straw and Im in so much pain I can’t walk or more .Any time I put weight on the hip that is hurting at the time it feelseems like it is breaking.. I even scream out and I feel as if people are thinking I’m crazy.I don’t know what to do people

  62. Lozz says:

    I am now 22 years old but have been suffering since I was about 16 and only last month they diagnosed me with hip displacia I have had so much trouble this my hip in pain all the time when I’m sitting down it locks and I can’t get up but I can’t have anythin done untill it’s really bad but it’s only 12.5 at the moment and it needs to be 15 but I am struggling to work can anybody give me any advice of what’s best or what I should do

  63. Vicki says:

    Hi Nancy! I hope your work situation has improved–there is nothing worse than a daily dose of non-supportive people! I wanted to ask about the periacetabular surgery. My daughter is 25, and has just been diagnosed with hip dysplasia. She has been to a doctor in Richmond, VA–not the doctor that did your surgery. Although we live in Hampton Roads, we couldn’t find a doctor who does this surgery here. We would like to get a second opinion. Was your doctor very experienced in this surgery? I have read pros and cons about it. How well has this surgery worked for you and any others on this site who have had it? I greatly appreciate anyone’s response, and I hope to get answers quickly as my daughter’s insurance will be running out in 2018.

  64. Bev says:

    Hey all

    I was diagnosed with what was thought to be right sided dysplasia as a baby. Body casts, traction and a hundred XRays followed and then I lived a normal fulfilled life including the natural birth of my two beautiful sons (9.6lbs and 8.8lbs and home the same day with both births) with zero hip trouble (for that I am so thankful)

    I am now 35, I play netball and exercise twice a week too but unfortunately 3 years ago I started experiencing bilateral groin pain (worse on my right)..each time it ‘flares’ I can’t walk without pain or sleep and it’s just horrendous. I am now getting less pain free months between the flares.

    I have seen a surgeon at the hospital where I work (I’m a nurse) and after imaging was told my dysplasia is actually bilateral and I have psoas inflammation and early arthritis as a result. A steroid injection has only lasted 5 weeks so I’m having another next week. I’m also waiting to see a specialist in London and a PAO seems to be what’s awaiting me.

    I’m absolutely gutted at the thought of surgery as I find the thought of being unable to work, drive, exercise, take my boys out for months quite depressing

    Can anyone give me any positives about this type of preservation surgery and how to best manage the recovery?!

    Thanks so much

    B

Leave a Reply

  • Social Media Links

  • Translate Link

    Para ver en Español Click Aquí

  • SubNav Menu

  • Latest News

    Latest News

    view all

    Where are they now? Shelby

    Dec 04

    We first heard from Shelby nearly 6 years ago. Her personal battle wit...

    World Journal of Orthopedics - New Report

    Nov 21

    Developmental dysplasia of the hip: What has changed in the last 20 ye...

    Babywearing Study

    Oct 31

    In the picture above, IHDI Medical Director Dr. Charles Price and D...

  • Latest Stories

    Latest Stories

    view all

    Laura

    Dec 18

    I was a baby when I was diagnosed with DDH. I had surgery when I was o...

    Rosie

    Oct 23

    I was diagnosed with DDH at 9 months old. At the time I was close to b...

    Isabella

    Sep 25

    When my youngest daughter was 2 months old I realized at our most rece...