At 32 years old, my doctor prescribed estrogen-based birth control pills. Shortly after starting the pills, I woke one morning with left hip and leg pain. I went to work and managed through the pain, went out after work with friends and by the time I made it home I was in a lot of pain. I decided to just go to bed. As I was changing clothes I noticed that my leg was mottled and firm to the touch.
I lived a block from the hospital so I got in my car and when I arrived I could hardly walk from the car to the ER. They quickly took me back and did an ultrasound and discovered a clot in my iliac vein from my ankle to my abdomen. I’ll never forget the words spoken in the ER: “If you’d gone to bed you probably would not have woken up.”
The next few days included a stay in the intensive care unit, a procedure to break up and dissolve the clot, and the placement of a stent in my iliac vein to keep blood flowing properly because the original ultrasound indicated I have a congenital condition called May-Thurner, a rare vascular condition that occurs when the right iliac artery compresses the left iliac vein. My experience with DVT (deep vein thrombosis or a blood clot in a person’s leg or arm) was significant, taking years to recover my full mobility and chronic pain from nerve damage.
Genetic Clotting Discovered
After doctors in the hospital missed the indicator on my initial genetic workup, a few years later thanks to a diligent female OB-GYN, I learned that I also have homozygous factor V Leiden which ultimately was the original cause of the DVT, worsened by the May-Thurner condition. Being unaware of the factor V Leiden defect for several years after my clot, put me at high risk for a recurrent clot and I’m thankful it was finally identified.
After my genetic clotting condition was discovered, my mom was tested. She had experienced clots after all three of her children were born. Unfortunately, it took this much time for her to learn exactly why this had happened. With this crucial information about our family’s medical history now confirmed through genetic testing, my five nieces were alerted to their potential risks as well.
Given our family’s experience, I strongly believe that this should be a standard test anytime someone goes on birth control or gets pregnant, as it also poses serious complication risks for mother and child. I am hopeful that sharing my story will increase awareness about these risks and help to underscore the potential role for genetic testing in women’s reproductive health.
