Sarah Bell’s Story About May-Thurner Syndrome and Blood Clots

Sarah Bell’s Story About May-Thurner Syndrome and Blood Clots

At age 26 in June 2006, I was diagnosed with a deep vein thrombosis (DVT) that extended from my ankle to my groin on my left side.  I was unable to walk, because of intense pain and swelling in my leg, and I thought I was going to die.  I was too scared to move, breathe, or do anything due to fear that one wrong move would send the clot to my lungs and kill me on the spot.

I spent a week in the hospital and was discharged on Coumadin® and compression hose.  I didn’t know the reason that I developed the blood clot, and my doctor’s only thought was that it was due to birth control pills, which I no longer take.  During this time I was doing research online about what could be done about my problem, but everything I suggested to my doctor was dismissed.

I experienced severe anxiety during the months after my hospitalization, because I believed this clot could kill me.  Moreover, my leg had not really improved; I still had swelling and pain.  I asked several times for leg scans to see what was going on, but again my doctor dismissed my requests.  In December 2006, it came time for me to come off my 6 months of Coumadin® therapy and I was scared at the idea of stopping it.  I remember having this conversation with my doctor and he said that 6 months on Coumadin was standard practice for a DVT.  I have since found out that this is more often true when the cause of the blood clot is identifiable.

My leg remained swollen and painful into the early part of the following year.  I finally convinced my doctor to order a Doppler ultrasound in February 2007 that showed another clot in my groin, and I was admitted to the hospital for another week.  My suggestions for treatment based on my reading were still dismissed.  I was told that I probably had a genetic clotting disorder, and that I would probably be on Coumadin® for life, and was also advised against any future pregnancy.  I was tested for blood clotting disorders such as factor V Leiden, and the tests were negative.

I finally realized I was more than overdue to change my primary care doctor.  I chose a new doctor who saw me during my hospitalization, and was very receptive to investigating what was going on with my leg.  I went to a hematologist, a geneticist, and all were stumped because I had no genetic clotting disorder.

My body started changing soon after this; I started developing “lumpy veins” on my lower abdomen.  I went back to the doctor and he sent me to an interventional radiologist, who took one look at my stomach and said there must be a clot in my pelvis or stomach.

He scheduled me for an immediate venogram, although, at this point, it was already February 2008, an entire year and a half after my initial DVT.  The venogram showed an 8 inch clot in my pelvis.  I had been walking around for almost 2 years with a massive clot in my stomach that extended all the way down to my ankle at one point.  I don’t remember much of what went on in the hospital that time, but I was diagnosed with May-Thurner Syndrome (MTS) for which I was given a clot busting drug and a stent was put in my vein to improve blood flow.  Unfortunately, in the time that I waited for someone to listen to me and help, there was permanent damage to my leg, and it will never be the same.

This was the first time I ever heard of MTS.  MTS occurs when the left iliac vein is compressed by the right iliac artery and creates a clot due to pooling of blood.  MTS is more common in young women, although it is a rare condition.  I believe MTS should at least be considered a possibility when a young women presents with a DVT in her left leg.  One of my hopes in telling my story is that it becomes more common practice to keep MTS in mind during assessment of a DVT in the left leg.

I am, however, still here and alive.  I am lucky that I had my daughter Ashley before this nightmare started, because it is too risky for me to have any more children.  She is truly a blessing as well as my husband, Dustyn.  I would not have made it through this without his love and support.  I will be on blood thinners and wear compression hose for life.  My other hope in telling my story is that people learn how important it is to stand their ground and demand to be listened to when dealing with healthcare professionals.  Patients are more aware of what is going on in their body, and are usually right when they sense something is wrong, even though healthcare professionals are trained as clinical experts.

Take Home Messages

  • See messages of author within her story, particularly the possibility of May Thurner Syndrome when there is a DVT in the left leg that does not resolve.
  • Be an advocate for yourself in seeking care and trust what your body is telling you.
  • Birth control pills increase risk for blood clots.

Posted December 2011

The personal story is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.
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