The pain started while I was a sophomore in college. I was trying out for a few sports (gymnastics and track) when I noticed my first symptoms. I was weight training and first noticed that I had lower back pain. I thought I had just strained a muscle from lifting weight that was too heavy, but it never seemed to get better.
It was during my college classes that I realized I could not sit comfortably in a lecture. My hips and my back would ache throughout every class that I sat through. I was still able to walk to classes, but my hips would ache at the end of a long day. I spent many of my nights icing my hips and back hoping that this pain would get better.
Later that year, I went to see a sports medicine doctor. They ordered x-rays and an MRI. They said the x-rays were normal and the MRI just showed that I had trochanteric bursitis. I didn’t really know what that meant or how it was treated, but I thought it was nice to have an answer to my pain. Turns out, trochanteric bursitis is an inflammation of your bursa on the outside part of your leg. Your bursa is a sac of fluid that covers the part of the hip called the greater trochanter and when it gets irritated, it can cause hip pain. Bursitis is more commonly found in middle-aged or older adults, so it was puzzling to me that I was experiencing this type of pain as a 20 year old. I was prescribed to go to physical therapy and I worked hard at it for three months. We tried a variety of exercises, dry needling, ice, heat, and bracing. No relief was in sight.
At that point, I went to see another doctor. This time it was a neurologist. She diagnosed me with piriformis syndrome in addition to the trochanteric bursitis. I learned that piriformis syndrome is when the piriformis muscle (a muscle deep in the buttocks) becomes tight or has spasms and puts pressure on the sciatic nerve (a nerve that roughly starts at the bottom of your back and runs all the way down your leg into your foot). After that I was sent to get injections into my piriformis muscle and bursa (which were somewhat painful, but not as bad as the pain I was currently in) and then was sent off to see a chiropractor. I made multiple visits to the chiropractor with no relief and the injections didn’t help any of the pain I was in either. During my last couple of visits, the chiropractor mentioned that I had a lot of movement in my sacroiliac joint and that that could be the cause of some of my pain. He gave me something called an SI belt to wear to help prevent some of the movement that was happening in that joint. I wore that SI belt for weeks and still had no relief.
The next doctor I saw was an orthopedic surgeon. He wanted me to get new x-rays and reviewed my past MRI. He couldn’t really see anything wrong in the x-rays, but maybe thought I had a labral tear. In your hip joint, there is a ring of cartilage called the labrum. This cartilage helps cushion the hip joint while also helping hold the ball and socket joint of your hip together like a rubber seal. Having a tear in your labrum can cause the hip joint to not function correctly which can cause pain and/or clicking or locking sensations. At this point, I was doing an internship for my final year of college and moving back home after college. I had to take a break from seeing doctors, but meanwhile, I was struggling to walk long distances, stand, use stairs, sleep, and sit for long periods of time. The pain I was experiencing was a chronic, dull, aching pain. I never got a break from it. There were times I would be in less pain, but most of the time my pain would be at a 7 (on a pain scale of 1=no pain and 10=worst pain ever).
Any sort of physical activity became very hard to do. Sitting on any type of hard surface such as a bench, chair, or floor was incredibly difficult and painful. Walking more than a mile for any reason was out of the question for me. All of this pain became very disabling and made me wonder what could be causing this much pain? I grew up being a gymnast and a lot of the time I had the mentality that I needed to push through the pain. I was a pretty tough kid and powered through various injuries growing up, but this pain was unbearable and I just couldn’t ignore it anymore.
After getting a new job with improved health insurance, I was on the hunt for what was causing my hip pain. Every doctor I had seen so far had given me a different answer. I felt so lost and frustrated at this point. I started again with seeing my primary care physician who sent me to another sports medicine doctor. At this visit, this doctor ordered another set of X-rays. Again, this doctor could see nothing wrong, but she genuinely listened to my symptoms. She definitely thought something else was wrong. She then ordered a new MRI. The MRI-which hadn’t changed much since the last one- still showed bilateral trochanteric bursitis and “labral changes” which indicated a labral tear. This sports medicine doctor just had this gut feeling there was still something else wrong, so she did a diagnostic injection into my hip joint. If there was a problem with my hip joint, the injection would give me some temporary relief, but if the pain was not from the hip joint, the injection would not change anything.
For me, this injection was not an enjoyable experience, but after I received it, I had one complete night of relief! Finally, there was something to indicate that there was a problem and it was coming from the hip joint itself.
After this injection, my sports medicine doctor then referred me to yet another orthopedic surgeon, but this time this doctor specialized in hips. This hip specialist was in another city about an hour away from my hometown, so I needed to travel for this appointment and as soon as I got there, they asked for another set of new x-rays. I was overwhelmed with the amount of hip and back x-rays that I had received, so I believed that they wouldn’t find anything because no other doctors had. The difference with these x-rays though, was that they took more than a couple of views and really got a well-rounded picture of my hips.
After the x-rays were done, I sat in the exam room and wondered what the doctor was going to say. Since this hip journey started, I had gotten a different answer at every visit. I didn’t know which doctors were right and which doctors were wrong. After the doctor came in and introduced himself, he proceeded to show me my hip x-rays and the angles of my hips while also asking about my symptoms and past treatments I had tried. One thing I appreciated about this doctor was that he truly listened to everything that I had experienced. A lot of the doctors I saw in the past did not treat me this way. After our conversation, one of the first things he said was, “I know what is wrong with you, but I won’t be able to help”. While explaining the significance of the angles of my hips he said, “You have bilateral hip dysplasia”.
I had no idea what that meant or how it was treated, but I had felt like a weight had been lifted off my shoulders! I was so relieved to finally have a true answer to my pain. He said to relieve my symptoms, I would probably need a periacetabular osteotomy (PAO) and that I would probably need it done on both hips. The doctor described PAO surgery as a very intense orthopedic surgery where they cut three areas of your pelvis and reposition your hip socket over the ball of your femur (upper leg bone). This repositioning helps the hip joint function correctly and screws are placed to hold the bones in the correct position. The full recovery for this surgery is roughly 6-12 months.
At this point, I had so many emotions going through my head- happiness, sadness, anger, frustration, and a sense of relief all at the same time. This hip specialist indicated that he is not qualified to do those procedures, so I would have to see another orthopedic surgeon that specializes in hip dysplasia. Having a diagnosis was great, but little did I know, there were not a large number of surgeons who specialized in PAO surgery and hip dysplasia, which made this process so much more difficult. Before I left the appointment that day, my hip specialist gave me a card with the names of a few surgeons in the surrounding area that could do the surgery. I spent weeks researching and taking into consideration other things that were going on in my life. Then, I finally decided on seeing a surgeon at Mayo Clinic.
Just to clarify, my first symptoms of hip pain started in 2011-2012 and I finally got a hip dysplasia diagnosis in 2019. That is 7-8 years of unanswered chronic pain. During that time period, I was able to get through college, work a part-time job coaching gymnastics (which is incredibly hard on your body when you have hip dysplasia), complete an internship, and find a full time job. Between all of that and the hip dysplasia diagnosis, I was mentally and physically exhausted.
I was able to get an appointment with the orthopedic hip surgeon at Mayo Clinic in December 2019. My appointment with my hip specialist was in August 2019, so it had been about 8 months since I saw a doctor about my hips. Getting in to see this surgeon was a very big deal for me. Mayo Clinic was about 4 hours away from my hometown. It was incredibly important that I get some answers from someone who specifically was an expert in my condition and to find out if I was a good candidate for this extensive surgery.
At this appointment, the surgeon looked at my past MRIs and multiple x-rays and confirmed my diagnosis of bilateral hip dysplasia along with a few other things that doctors saw in the past. My full diagnosis was mild bilateral hip dysplasia with labral changes and bilateral trochanteric bursitis. After explaining to me what all of that meant, I was told to try seeing a pain management doctor before moving forward with a PAO. At first, I was frustrated by this answer because I had been managing my pain for years and nothing was working. I was able to still schedule the PAO, but I was told I should cancel it if the pain management was effective.
My surgery was scheduled for March of 2020, but I didn’t know there was a pandemic on the horizon when I was scheduling it. After taking some time to process everything, I made an appointment with my local pain management doctor and he gave me some pain medication to help me sleep because at this point I was in so much pain, I did not get good quality sleep each night. For a few months, the medication was mildly helping, but it did get to a point where it stopped being effective for me. As it got closer to March, I discovered that I had low vitamin D and iron and on top of all of that, the COVID-19 pandemic was causing concern for many medical facilities. Due to all of these factors, my surgery was then cancelled and pushed back to August 2020. I was so upset that I was going to have to wait almost a year from my consultation to get my PAO surgery, but I also understood that these were unforeseen circumstances.
Once August 2020 came around, I was extremely excited! I wasn’t looking forward to a big surgery, but I was looking forward to finally having my life back. During the waiting months before surgery, I did research on my condition and found support groups for it. Both of these things helped calm my nerves about the surgery and truly made me feel like I wasn’t alone in this whole process.
By doing research, I fully understood anatomically what they were going to change about my hip joint and understood that the recovery for this surgery was going to be fairly long. The support groups that I found provided information such as what adaptive devices would help the most after surgery and how important it is to find a great physical therapist and how that can impact your recovery time. Reading stories of other individual’s recoveries helped me the most because it helped me see that your quality of life and pain can get better after this surgery. The support groups also became a great resource to find someone who was recovering at the same time as me. It has been so nice to have people support you while they completely understand what struggles you are going through because they are experiencing those same challenges themselves.
Seeing the surgeon at Mayo Clinic was not an easy process for me. There were many insurance issues I had to work through before my insurance would cover my appointments and surgery, but everything worked out fairly smoothly. I was able to have PAO surgery at the end of August in 2020 and it was one of the best decisions I have made.
The recovery for the surgery is extremely challenging, but it has totally changed my quality of life. I am now one year post-op and can walk, run, climb stairs, and jump with minimal pain. After surgery, I did a large amount of physical therapy and still continue to do my exercises to this day, but I think my commitment to those exercises made all the difference in the success of my recovery. Today, I am able to continue coaching gymnastics and can do all the things 20-somethings want to do. With such a positive outcome from my first surgery, I decided to move forward with my 2nd PAO surgery which will be happening in December 2021.
I hope sharing my story helps people understand that getting the correct diagnosis is extremely important and can contribute to months or even years of chronic pain. I support the International Hip Dysplasia Institute and the research that is being done so that other people don’t have to wait years for a correct diagnosis.
The Day of Movement on October 9th will be a day to celebrate the perseverance and mental toughness it takes to get through this diagnosis. It’s also a day to have gratitude for what our bodies are able to do and spread awareness about a condition that very few people know about.