It all started with a running injury and a swollen, sore left calf. I wore a walking boot for my supposed achilles tendonitis and soleus muscle strain, thinking my active life would continue after the injury healed.
Sadly, after a lot of physical therapy and every test one could imagine for a problematic calf/achilles injury, the swelling and pain moved up my leg to my left hip and buttocks. Soon, I had burning in my left buttocks and was unable to sit for any extended period of time. None of the doctors, physical therapists, or chiropractors I saw could figure out why or explain the swelling. Many of the doctors encouraged me to seek mental health treatment for my pain explaining that there was nothing wrong with my back and therefore nothing to explain the extreme pain and burning in my left buttocks.
So, I went to mental health therapy. I dug into every possible thing that could be causing this intense pain and tried to explain how this injury had impacted my ability. Nothing changed my pain. Eventually, one chiropractor mentioned my piriformis muscle, so I began getting that treated at PT and through the pain clinic. I had shots in my piriformis, SI joint, and tailbone. There was no change, and sometimes I would have to stay home from work because PT had caused so much pain.
I felt ill, mostly tired and achy all over, different than I'd ever felt before, so I asked my PA to run some blood tests. This came back with a positive ANA, so I went to see a rheumatologist. He ran more tests and then diagnosed me with fibromyalgia. He believed that this was the source of my pain. This didn't make sense to me because although my whole body hurt, most of my unbearable pain was left sided and only in my left hip, buttocks, and calf. Why was only one side of my body swollen? Frustrated, I tried a new pain clinic. This doctor suggested that I see another rheumatologist to get a second opinion. This rheumatologist walked into the room and said, "What do you want from me? You need to exercise for 30 minutes each day before I treat you for anything." I left his office feeling furious and hopeless. I wanted nothing more than to be able to exercise.
My PA suggested that I see one more doctor to get another opinion; this was probably close to the 50th opinion. This doctor took x-rays of my hip, noticing an FAI or femoroacetabular impingement. He recommended I see a hip specialist. The first doctor to even look at my hip. I was hopeful that I'd get answers.
The hip specialist diagnosed me with deep gluteal pain syndrome and piriformis syndrome. He assured me that I was in the right place and explained that women's hip injuries are behind the times in the medical profession which is why I struggled to get a diagnosis. He insisted that I do all the PT again with his physical therapists and try more shots with his preferred doctors. I did all of this, but my pain persisted. I eventually chose to have piriformis release surgery and sciatic neurolysis. Before surgery, I had to see a psychologist to determine that the pain was in my hip, not my mind. They told me that this is standard procedure for this new hip surgery. New hip surgery, in 2016. What were women with this hip injury doing before? This pain was absolutely debilitating.
My hip surgery was most likely the first of its kind in the state of Utah. My doctor completed a fellowship with the national expert in Texas before attempting my surgery. I considered seeing the expert in Texas, but there was a waiting list of one year for the initial appointment. I could not wait that long. I felt safe and confident in my doctor. The day before my surgery, the insurance company called to say that they were no longer approving the surgery, calling the procedure experimental. We decided to move forward with the procedure and fight the insurance company after. I was desperate for relief. My pain had progressed and I was unable to even go to the movies or out to dinner. The doctor's office said this had been a problem in the past with insurance companies not approving many female hip procedures and that they'd work with us on payment.
The surgery did not go as expected, but was successful. The doctor was unable to see with the camera because I had an abnormal amount of collaterals in my left hip causing bleeding that obstructed his view. He paused the surgery for about four hours to see if the bleeding from the collaterals would discontinue, but he had to resort to an open procedure. Thankfully, all of the burning in my buttocks was relieved. I could actually sit without difficulty. Because the procedure was open, it took much longer to heal.
I ended up quitting my teaching job because I continued to feel fatigued and had a difficult time being upright for the majority of the day. I applied for grad school, wanting to help others deal with chronic pain. to be continued...eventually, I get diagnosed with Pelvic Congestion Syndrome, POTS, May Thurner Syndrome, Nutcracker Syndrome, MALS, MCAS, and a Hypermobility Spectrum Disorder.
Comments