Anky…spondy…what-y? My Journey to a Diagnosis

I have always been an athlete- soccer, softball, running, basketball, and in college I played rugby. I loved it, but would be completely lying if I said I didn’t take a bit of a beating. I started to have pain in my hips unlike anything I had ever experienced. I was on and off of crutches for months because the trainers couldn’t figure out what was causing it, but assumed taking pressure off of the painful joint would help- and it always did…at least for a little while. After working constantly with the athletic training staff and school doctors, I was sent to have MRIs done and go see an orthopedic surgeon.

I was having a bad pain day and hobbled myself to the MRI clinic. A very large needle injected dye into my hip joint to help see any tissue tears, and I laid silent and still while they took the images. A few hours after I left I received a call that I needed to come back because the technician had taken images of the wrong hip….so I went back the next day and the whole process was repeated. The orthopedic surgeon didn’t seem confident that he saw any problems in the MRI, but based on my symptoms and the results of the range of motion tests he did he was fairly certain that I had a partial tear in my labrum and/or my psoas tendon was being pinched by the joint. We decided laparoscopic surgery was the best option. I don’t think I ever really felt confident in this, but at that point I was so frustrated with the pain that I was willing to do whatever a doctor told me might help.

In July 2013 I had surgery- the doctor both cleaned up the “frayed” labrum and snipped the psoas tendon to relieve any pinching. My recovery went well. I lost the ability to lift my leg for a few weeks (which was wicked weird), but I was lucky enough to have the athletic training staff at school available for my physical therapy. I went to see them 3 days a week for MONTHS; I still had some pain but thought that was probably normal. After 6 months I was cleared to go back to regular activity, and after another two months I was cleared to play rugby again. I was so pumped to be back, but the pain still wasn’t really gone. I stayed quiet about it (I think I was also a bit in denial) and graduated college and entered “adult” life. I stopped playing rugby hoping that eliminating the extreme contact sport would finally make the pain go away. It didn’t.

My husband (who was my boyfriend at the time) and I lived in the city, so I walked to the train to get to work everyday. There were MANY days when I had to ask him for rides because my hips hurt when I walked. Or days that I would walk in the door after work almost in tears because the 5 minute trek home from the train had caused me so much pain. He urged me to go back to the doctor, but after my experience with my less-than-confident-in-his-diagnosis surgeon I wasn’t interested in being told I should have another surgery that wouldn’t really fix anything.

Fast forward another year. I was dealing with the pain and living a life that revolved around how my hips were feeling. I now was starting to have weird back pains. Every morning when I woke up my lower back KILLED. As I went about my day the pain subsided, but it was always there when I got up the next day. At the time I had no idea that this was related, so decided I would make an appointment with my primary care doctor. When I told her about the morning back pain, and also mentioned the issues I had with my hips and my history with the surgery, she told me that my problems seemed to be “out of her pay grade,” and that maybe an orthopedic doctor would be able to help…

I was furious and frustrated and wrote off going to the doctors anymore. (It’s also worth mentioning that during this year I had gotten iritis in me left eye twice, and my primary care doctor had been the one to prescribe the medication for it.)

Fast forward another 6 months. I had THE WORST flare that I had ever experienced. I was in so much pain that I could barely get off of the couch. I cried just getting up to walk (or shuffle, or crawl- I really couldn’t walk) to the bathroom. My husband urged me again to go see a doctor- this time I could tell how concerned he really was. So I scheduled an appointment with my surgeon from before (I’m still not sure why I thought I would have any better of an experience with him this time around).

In the months leading up to my appointment I got iritis again. This time the regular round of steroid drops didn’t clear it up. My primary care sent me to an optometrist, who sent me to an ophthalmologist, who sent me to a different ophthalmologist that specialized in iritis. She ended up being one of my heroes in this journey. She treated the iritis and decided to do some blood tests because this was happening to me so frequently. She found out that I was HLA-B27 positive, and suggested I schedule an appointment with a rheumatologist. I didn’t know what any of this meant, and at the time had no idea that my eyes were related to my back and hip pain.

Shortly after the ophthamologist I had my appointment with the orthopedic surgeon. He booked me for another MRI and x-rays, and both were inconclusive. He did notice a “large mass” on my MRI near my uterus, and scheduled me to see an OBGYN. He also scheduled a follow up with him after- at this point he thought that the “large mass” might be pressing a nerve and causing the pain. He mentioned cysts, tumors, or endometriosis, and I was panicked. It turned out that it was just a functional cyst that was totally normal, and was definitely not the reason for my hip and back pain. When I went back to the ortho he seemed stumped. He suggested I try more physical therapy and follow-up again in six months. UGH. It was at this point that I mentioned my visit with the opthamologist, and the blood work she had done. I told him that I was HLA-B27 positive. By now I had done some research online (I know, I know, this is usually a terrible idea- but in this case I ended up being right), and thought my symptoms might be consistent with something called Ankylosing Spondylitis. The ortho didn’t make much of it- he wanted me to try PT and come back in a few months; fortunately his assistant (PA) was a little more attentive, and asked me if I had considered seeing a rheumatologist. She offered to schedule the appointment for me with a doctor in that same hospital who was really good- I took up her offer. She ended up being my other hero.

Months later I walked into my rheumatologists office and before I could say a word he said “I know exactly what you have.” I was right, it was Ankylosing Spondylitis. He explained that it was a hereditary autoimmune disease (but weirdly no one else in my family has it…) and gave me some information packets. He wanted to give me some time to read and research, and come back a few weeks later to discuss and decide what we would do next. Apparently the x-rays I had had taken months earlier very clearly showed fusion of my S.I. joints, and he was quite surprised that my ortho hadn’t noticed it. *eye roll*

Ankylosing Spondylitis slowly causes the spine to fuse together- my hips had been hurting because my S.I. joints had been fusing. Lower back pain in the morning that gets better with activity is a tell-tale sign of A.S, and iritis is common- my primary care knew about both and had written them off. To this day I am convinced that the hip surgery I had wasn’t necessary, and could have been avoided if any of the handful of doctors who saw me knew more about diagnosing patients with A.S. Unfortunately that is the reality of this disease- it is fairly common, but medical professionals are far less educated on the symptoms than is needed to treat all of the people effected.

I was lucky- it took me 4 years to get a diagnosis, but for many others it takes much longer. I said my ophthalmologist and my PA were my heroes- I honestly feel if it weren’t for them my regular doctors may still not have put the pieces together.