My story begins in 2010. I was 20 years old, and I was enjoying the perfect summer. My summer was filled with trips to the beach with my friends, going up North with my boyfriend Eric and working as a Certified Nurse’s Aide.

On July 30th, 2010, I was getting ready for work when I noticed that my left leg hurt and was warm to the touch. I had gone to the beach the day before with my friends, and I assumed that I had gotten a sunburn, so I wasn’t worried.

A few days passed, but instead of getting better, my leg was getting worse. I could barely stand on my leg because it hurt so much. When I did stand, my leg would begin to swell and turn purple. At the time, I assumed that whatever was wrong with me could be fixed with rest, which is why I was surprised when I ended up in the emergency room for an ultrasound.

After the ultrasound, I was taken back to my room, where my mom sat waiting for me. As we waited for the doctor to come and tell me the results of my ultrasound, I told my mom that I was sure that I had just pulled a muscle and that I would soon be released. Soon after I said this, the doctor walked in, but it was not with discharge papers.

I will never forget what happened next. He stood by the side of the bed and told me that I had a large deep vein thrombosis in my left thigh. He explained that a deep vein thrombosis was another way of saying blood clot. All I could do was sit, completely stunned. I was 20 years old. Twenty-year olds do not get blood clots.

As time went on, the pain did not decrease like I was expecting it to. In desperation, I began to search for a doctor who could provide me with the answers that I desperately needed. My search took me all the way from one side of the state to the other.

I didn’t realize that it would take close to a year before I would get an answer. During that long year, the pain continued and I almost had no hope by the time I met the doctor who would be the only one to give me an answer. On June 14th, 2010, I walked into the hospital for my venogram. I was ready for my clot to be gone. About an hour later, I would get my long-awaited answer.

Finally, the months of pain and agony had an answer: May-Thurner syndrome. I had never heard of May-Thurner syndrome. In fact, not many people have because it is a rare disorder.

Since the diagnosis and treatment of my May-Thurner syndrome, I have been leading a very active, healthy life. I am going to college to become a medical social worker, and I’m enjoying every second of being healthy!

18 thoughts on “At Only Twenty Years Old, Lindsay Learned She had May-Thurner Syndrome”

  1. Tanja says:

    I am wondering…are there more possibility’s for treatment for May Thurner Syndrome in America? I am from the Netherlands and the docters here don’t know anymore what to do with my complex problem. They haven’t seen this problem in such a severe degree.
    I was 21 with my first DVT. Years later I was diagnosed with Factor V Leiden, May Thurner Syndrome, Post-Trombotic Syndrome and Lipoedema. Have had Bypass-surgeries but they failed and stenting isn’t possible for me because it’s about an area from belly button to under knee.
    Everyday I have severe pain and taking pain medication for it. Lifelong on warfarin.

  2. Jennifer says:

    You should send your information to mass general hospital in Boston the do pharma mechanical intervention and can help

  3. Kayla Southerland says:

    I am 25, and have been fighting blood clots for 5 months. I have been on cumadin and it was considered a failed treatment as my clot grew while I was on the anticoagulant. I am now on Xeralto, which seems to be working, I also have a filter and my cardiologist found that I have May Turner Syndrome AND Anticoagulant Lupus. Its a long hard road but this story gives me hope that I’ll be back to normal… or normal like someday. I have a stent in for the May Turner, however, the Anticoagulant Lupus is something that I will have to fight the rest of my life with Anticoagulant meds.

  4. Tim says:

    Does anyone have experience with this condition in youth? I have a teen age daughter with a follow-up appointment / venogram to fully diagnose coming up.

  5. barbara russic says:

    Recently my healthy 18 year old daughter went to the er for pain in her hip. She had a ultrasound and they found a bloodclot. She was transported to another hospital that had a vascular surgeon. She had a catheter put in her leg behind the knee. 2 days of medicine to break up the clot. The third day they put in a stent to keep her vein open that was being crushed by her artery. Diagnosis May Thurner Syndrome. This was the worse clot seen by her surgeon in a healthy 18 year old. It extended from her groin high into her abdomen. She is now on Coumadin for 6 months. This just happened in the past few weeks.

  6. Meagan says:

    I am 25 years old and was just diagnosed with May thurner syndrome in January, when I was hospitalized for a large DVT in my pelvic region. The doctors said that it was nearly 8 inches long. I had the same treatment that Barbara described above and I now take Eliquis twice daily and see a specialist every 3 months.

  7. Vivek makket says:

    I am 41 leading a very active like had a Dvt and mTs treatment done last week just want to know of anyone can answer on by when can I be perfectly active as the leg becomes heavy after sitting for ten minutes. Also do the medicines continue for a very long period .

  8. Pamela Maynard says:

    In July 2012 I went through something very similar. I was only 23. I was working began experiencing severe pain in my left leg. I left work and went home to lay down. When I woke up I tried to stand up but fell. After driving to our local hospital they made the immediate decision to life flight me to Phoenix (a 7 HR drive) for emergency surgery. I arrived and went into the ICU and underwent two massive surgeries in a 10 day time span. I had a DVT that went from my toes to my hip. If I would have waited any longer I would have had a PE and been dead. They diagnosed me with May-Thurner and told me that the trigger was my birth control. They interested several shunts in my leg to keep the blood flowing and put my on blood thinners for 6 months. Then in September 2013 I experienced another DVT in my right ankle. I once again was hospitalized and, at the time, was pregnant with my second child. Afterward they put me on Xerlato permanently. I have recently stopped taking blood thinners because I ran out and hoping for the best.

  9. Rebecca Winemiller says:

    After two years of trying to find a diagnosis for my sons blood clots, I did some research & requested an appointment with a cardiovascular dr, which then found out he has may-thurner syndrome, but he has had 3 surgeries, 4 Stints put in, changed his blood thinner twice, he continues to have problems, he gets a couple months of relief then swelling, pain & blood clot again. Went today to his dr, she wants to send him to Minnesota, don’t know what to do.

  10. Erin Rains says:

    Tim-I know its 2 years later, but I have 16 year who is awaiting a MTS diagnose right now. She is looking for support and help right now as she is struggling with returning to school.

  11. Please consider sharing your full story with us and others here: We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Managing Editor

  12. Susan says:

    I was recently diagnosed with this disorder in my early teens they called it phlebitis I have had several blood clots removed in my left leg 3 years ago I had 3 stents put in now I’m back to day one with the swelling and a lot of pain and now I am in my 50s.

  13. I was just diagnosed with MTS. I was told that it was from having multiple births. I’ve had a lot of pain throughout my pelvic area and even in my rectum, down my left leg. Has anyone else had bad pain after intercourse (like can’t stand on your leg) and before and during menstruation? My pain is related to my cycle or even if I have bad gas in my abdomen. So weird, I feel alone and don’t know anyone else who experiences this kind of pain in their legs for normal life things!

  14. Rachel says:

    Your description sounds just like my situation. Feels good to know I’m not alone, or crazy.

  15. Brandy says:

    I recently diagnosed with May Turner and Pelvic congestion syndrome. I tried accupuncture and it help but my legs calves are so swollen and huge. They are heavy as if I am wearing 10 pound weitlghts on each leg. I cannot be patient to wait for accupuncture to work. I may go thru with both procedures. Has anyone ever had both.of these diagnoses?

  16. May Thurner syndrome is a relatively unknown cause of DVT and unexplained leg swelling. Many physicians are unaware of MTS and the complications of chronic DVT. To learn more about MTS, DVT and its complications, visit my blog Here you will find educational videos about MTS and the treatment of DVT.

    Deepak Sudheendra, MD, FSIR, RPVI
    Assistant Professor of Clinical Radiology & Surgery
    Hospital of the University of Pennsylvania

  17. Rae says:

    it took 13 years and many visits to doctors across the United States to get my diagnosis and stents. I had no clot. Three years ago and many years after being diagnosed with May Thruner I had a large DVT in my right leg. Now I have stents in both legs.

  18. Hello Brandy,
    I have both May Thurner and Pelvic congestion syndrome. I have never had leg swelling or DVT’s. I had chronic pelvic pain for 9 years before it was finally diagnosed. I have had a vein embolization and 2 iliac stents.

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