After a long car trip, I began having pain in my right calf. I came home and told my doctor I thought I had deep vein thrombosis or DVT.
He ordered an ultrasound, which took less than 10 minutes, and it came back negative for DVT.
My pain continued to worsen over the next two months. I then took another trip where I wore compression socks and took aspirin. After returning, my pain intensified. I went back to the doctor and requested another ultrasound, and again, it came back negative for DVT. The doctor also told me to stop taking aspirin because there was nothing wrong with me.
A week later, I got home from work and could barely stand on my leg. I began having palpitations and felt very dizzy. Instead of going back to my doctor, I went to a freestanding urgent care.
The ultrasound tech immediately located multiple DVTs in my right leg and a DVT in my left leg. She stated I have a duplicate vein system in my right calf, which could explain why the first two ultrasounds came back negative — they were not looking deeply enough to find it. I was immediately started on an anticoagulant.
Although the pain in my legs seemed to get a little better, the pain in my right thigh and back worsened. I went to the ER three more times in excruciating pain. I was told that it was post-thrombotic syndrome and to stop coming to the ER.
I then found a story on the Stop the Clot Facebook page about May-Thurner Syndrome. I made an appointment with a vascular specialist and I asked if I could be tested for MTS. The doctor said it was unlikely, as that normally affects the left leg, and my pain was on the right side, but she ordered a pelvic MRI anyway. She immediately called with the results. I had 90% stenosis (narrowing) of my iliac vein.
I had a four-hour surgery a few days later. They had to place two stents to open up my compressed veins. I also had pelvic congestion syndrome (PCS), my left ovarian vein was embolized, and they found damage in my left and right groin from untreated DVTs. I woke up feeling like a new person. I am thankful I found this group!
The patient stories have been most useful. They have given me hope. I have learned that I need to trust myself more and be an advocate for myself.
This experience has made me appreciate life much more. I also believe I have a bit of PTSD from the situation.
My advice to others is to trust your instincts, get a second opinion, and do research on your own as well.
Resources
May-Thurner Syndrome
How is a DVT Diagnosed?
Facebook Support Group
