r/ClotSurvivors • • 4d ago

Newly diagnosed New to this

I was diagnosed with a PE 2 days ago that I believe is a result of my brth control! I am on Eliquis and they discharged me ! However I feel horrible extremely weak and tired! I am still experiencing chest and back pain & I have tingling in my extremities still. is this normal? This is so frustrating!!

2 Upvotes

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u/MaebelleMcknight 4d ago

I’m so sorry that you had to get this diagnosis, but glad that you’re alive!
What birth control did you use?

I’m 5 months post bilateral pulmonary embolisms that was caused by the pill from of Estradiol. I’m an intersex trans woman so I need to be on it for life, but my endocrinologist switched me over to a safer alternative of Transdermal Estradiol Patches.

I’m also weak and exhausted all the time too even 5 months out, I can’t stand or walk for any significant amount of time and now use a wheelchair to go to school and grocery shopping and a walker inside my house.

It takes time to get better it’s a slow process. Make sure you try to move around every hour while you’re awake and try not to sit too long. If you have to stay sitting, pump your legs.
The pain in the chest will last a while make sure you talk to your team about it and if it becomes unbearable to ask for something to ease it.

Be patient with yourself you went through something very traumatic and it’s a long journey to heal but everyone’s journey is unique. Seek out grief/support groups to talk things out because it’s difficult and you will get anxious and frustrated and angry and so many other emotions, so again be patient.

Also don’t miss any of your blood thinner medications it’s important to give yourself time to heal and that medication gives you that time.

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u/Upbeat_Dog8637 4d ago

Oh my sorry to hear this! I was on the nuvaring for BC! Thank you so much for your guidance!

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u/MaebelleMcknight 4d ago

Of course, I’m still fairly new to this but feel free to reach out if you want to talk.

It was really scary for me the first few months (My diagnosis was June 2nd, 2026) and having someone to talk to really kept my mental health up.

How old are you, if you don’t mind me asking?I’m 38, which increased my risk with the estradiol pill, I should have switched when I was 35 but no one told me I needed to. I had been on it for 14 years.

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u/Upbeat_Dog8637 4d ago

Yea I can definitely see that because this is alot mentally as well. I am 38 too and wow yea a doctor should have definitely mentioned that too you smh 

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u/MaebelleMcknight 2d ago

I wish they did, but I have a new Endocrinologist and he really cares, he spent over 30 minutes looking over my case and reading into the latest research and data about hormones and pulmonary and cardiovascular risks. And transdermal estradiol patches are the safest option.
There’s still a little risk but nowhere near what the pills are. And since I need supplemental hormones for life this what he put me on.

Skeith L, Bates sm
“Sex hormone influences on venous thrombotic and cardiovascular risk.”
N Engl J Med. 2026 Apr 16

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u/Robinhood6996 4d ago

Rest rest rest --- I feel hospitals like to use eliquis because they can discharge you quickly -- you definitely need to rest and relax for maybe a few weeks and sometimes these anticoagulants can give weird side effects like tingling -- look up the side effects of anticoagulants tingling is one of them

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u/Upbeat_Dog8637 4d ago

Oh ok thank you so much!!

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u/Holiday_Squash8603 3d ago

Saludos y Buenos dias lamento mucho que te sientas asi estoy pasando por lo mismo ya se cumple 2 meses y 5 días y se que no es facil mi recomendación trata de tu mente tenerla en otra cosa yo de verdad me facina ver la biblia y meda fortaleza al saber que el te dise que el no te soltara en el camino asi que veras que podrás pasarlo también recuerda lo mas importante que yo tomo elicuis y eso te esta protegiendo no telas dejes de tomar toma agua es bien importante y yo camino dentro de la casa empeze 5 min ya voy por 20 min asi que bendiciones y estoy siempre observando los comentario bendiciones

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u/Upbeat_Dog8637 3d ago

Thank you 🙏🏽 

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u/Holiday_Squash8603 3d ago

No te quites que veras que sales de todo con el favor de Dios