May-Thurner syndrome (Cockett's syndrome): "We must not give up!”

Hello Elodie60, thank you for agreeing to share your story with us on Carenity! 

First of all, could you tell us a little bit about yourself? 

I am a 36-year-old woman, who has been married for 14 years and is a mother. I have three beautiful children aged 14, 10 and 6. I love reading and watching series on Netflix.  

You have May-Thurner syndrome (Cockett's syndrome), which is a rare disease. Could you tell us about it and its symptoms? 

The disease is a syndrome, which means that there are several symptoms: I have pain, shooting, electric pains, and swelling in my left leg. I also have pelvic pain, as well as lower abdominal pain, and swelling of the stomach and vulva. 

When were you diagnosed? What were your initial symptoms?

I was diagnosed following a phlegmasia cerulea dolens (PCD), a rare and severe form of lower extremity deep venous thrombosis (DVT). I had an emergency operation with a thrombectomy. I've had symptoms for several years, but we didn't realise what they were.  

Had you heard of May-Thurner syndrome (Cockett's syndrome) before your diagnosis? How did you feel when you received the news?

I hadn't heard of Cockett's syndrome before I was diagnosed. When I was told about it, I didn't fully understand it even though the surgeon explained it to me because I was so much pain from my operation.  

What did you think of your post-diagnosis care?

My initial care went well. Since diagnosis, I have regular follow-ups and I'm still undergoing tests. I may have other conditions or syndromes, so my diagnosis is ongoing.

What treatments are you currently taking? What do you think of them?

I am on blood thinners and wear medical grade class 3 compression stockings day and night. There is no known treatment or operation for May-Thurner syndrome (MTS). However, I am taking pain medication and have recently tried electrostimulation.  

How has your condition impacted your personal and professional life?

It has had a lot of impact on my personal and work life. I haven't worked since my operation, and I am on long-term sick leave. On the personal side, I can no longer drive. I find it difficult, if not impossible, to vacuum. Fortunately, my husband takes care of this for me. He cooks and my children help us. My intimate life is also difficult from time to time.

Are you able to talk openly about your condition with your friends and family? Do they understand it?

I talk easily about my syndrome, but they have trouble understanding it. I have a very close circle of people around me, but not as many as I would like. 

What do you think of patient exchange platforms like Carenity?

I like Carenity very much, but I wish there were more people on the site with my same condition.

Finally, what advice would you give to other Carenity members living with a chronic illness?  

It's hard to give advice because I'm not in the best spirits every day. My husband tells me to be satisfied with one accomplishment every day, and to not give up. And to stay positive!

A final thought?

If you are close to a person suffering from an illness or a syndrome, don't leave them out, a call or a text message is always a pleasure, and above all, don't feel sorry for them or try change their outlook.

Many thanks to Elodie60 for sharing her story with us on Carenity! 

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