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Pedicured Feet

MAY-THURNER SYNDROME (MTS)

This site is only for informational purposes. 

MAY-THURNER SYNDROME FEELS LIKE...

‘I feel severe pain in my groin, uterus, and private area, like there is inflammation.  It is sore to touch.  When I first had the pain, I thought there might be an abscess in the area.  There was heaviness and pressure in my pelvis, private area, and rectum.  I can't sit or stand more than five minutes without an increase in symptoms.’  MTS Patient

WHAT IS MAY-THURNER SYNDROME?

 

May-Thurner syndrome (MTS), also know as Iliac Vein Compression Syndrome or Cockett's Syndrome is caused when the left iliac vein is compressed by the right iliac artery causing left leg swelling and sometimes DVT (deep vein thrombosis) or blood clots.  The opposite can happen on the right side causing right leg swelling, and some people have it on both sides.

Main Symptoms of MTS:

  • leg pain and/or swelling, but can occur without swelling

  • leg heaviness

  • increased pain or swelling when upright or exercising

  • brain fog

  • dizziness

  • back pain

  • cold feet

  • anxiety

  • fatigue

  • varicose veins

  • pelvic pain or fullness

  • pain with sexual arousal, intercourse, or after orgasm

  • breathlessness with minimal exertion

  • thigh discomfort after sitting 

  • reoccurring blood clots

  • skin discoloration and ulcers

Legs with Leggings

HELPFUL RESEARCH ARTICLES AND MEDICAL SITES

Research articles can be helpful and validating, but frequently there's not enough research.  This list is to help get you started.

When looking for research articles, it can be helpful to search other conditions you have and MTS to see if they are related. If you are specifically concerned about the treatment, it can be helpful to search that specific treatment.  Check with your local library if the articles you need aren't free.  Google Scholar is helpful and has a lot of free resources.

GETTING A DIAGNOSIS AND TREATMENT

If you think you have MTS, use this info to get to the right doctor or ask your primary care doctor to order the imaging.

Doctor Operating CT Scanner
  • You may or may not need a referral to an Interventional Radiologist.  Interventional radiologists treat MTS.  It is important to find a provider with experience treating MTS, some doctors have more experience than others.  Ask your doctor how much experience they have treating MTS and find a doctor in your area that is familiar with the condition.  Look in the MTS Facebook Groups for recommendations of doctors in your area.

  • MTS is generally diagnosed with ultrasound, CT, MRI, and venogram.

  • MTS is most often treated with a stent, but can be treated other ways.  Some people are allergic to the metal used in the stents; check with your doctor if this is a concern for you.  Sometimes doctors will recommend blood thinners and compression stockings.  If this isn't helping, advocate for more aggressive treatment like a stent.

  • If you have pain in your left flank, left sided migraines, POTS, or pain in your epigastric area, you should also be evaluated for other vascular compressions, especially if you are hypermobile.  It can be difficult to find providers who understand the complexity of vascular compressions, but treatment of MTS can sometimes worsen other compressions if this isn't considered.  Look at our pages on Hypermobility, SMASPelvic Congestion SyndromeNutcracker Syndromeand MALS if you think you may have other vascular compressions.  If sitting is unbearable and you have sciatica, look at Deep Gluteal Pain Syndrome.

IN THE NEWS

Many people share their stories because it was so difficult to get a diagnosis.

FACEBOOK GROUPS FOR MTS

It can be helpful to connect with others about their experiences.  You can ask about doctors in your state, how their treatment went, compare symptoms, and get support from others who understand what it's like to have MTS.

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  • Try to join groups with the most members to give you a larger sample size and a higher probability of finding someone with symptoms like yours. 

  

  • Remember that Facebook is public and follow the group rules. 

  

  • Go to this page for more helpful hints on using Facebook as a resource.

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