Anyone been diagnosed with May Thurner? Or even heard of it?

[KMDB]

[ninewells]

Hi KMDM,

I don't know to much of the condition but i am aware it can be started with a DVT/ Blood Clot or a bad trauma or joint replacement. I know it causes severe swelling and pain due to problems that block the flow of blood. I am keeping my fingers crossed that you have be offered treatment depending on how your own condition presents itself to the Doctor. I so hope you have a Doctor who is taking good care of you, also putting in place a good Network of support.

I have also attached a website that can offer some information for you, but i am sure you may be well informed about your condition. But we are happy to chat with you and help you find more information on the condition. We all know what limb swelling and pain feelis like, and how it can get you down and have such an impact on your life. So don't feel you are alone, i am so sure there will also be a website/forum of your condition, much like ours, that you may be able to chat to others who have coped with it.

I had a quick look and found the story of a young lady, but it also links to more stories and information available for you. I hope it helps. Good luck.

pop it on google and it will open up for you.

forum.clotconnect.org/discussion/71/may-thurner-syndrome/p1

Ninewells

[KMDB]

Hi thank you nine wells for the lovely reply. I know quite a lot about May Thurners know thanks. I am on a forum for it too with some amazing people. It doesn't always present with a clot - we have a non dvt group I am in. I wondered if anyone had been diagnosed that has left or (sometimes right) leg swelling. It is very often missed as the cause of swelling. My lymphedema came on very quickly - a matter of days / week. I understand it's usually a slow progression. Likely because of the venous issue presenting. Perhaps I should do a blog with my story so far?

[LymphSuppNetwork Partner LSN]

Hi KMDB

As ninewells said May Thurners is a rarely diagnosed venous condition that can lead to DVTs and lymphoedema. Glad to hear you have connected with the forum - I am sure you will get lots of helpful advise. A blog sounds like a really good idea. Go for it