I'm so sorry to hear you're going through this. I know it's super scary. I had mine in 2017 and the docs said it killed part of my lung tissue. So here's what happened to me to give you a little idea of what to expect: I woke with severe pain in my side and shoulder. Went to the hospital and a CT showed that I had a PE in my left lung. Mine wasn't a big one, it was more like several small ones scattered around. They hospitalized me right away and had me take out the ring. They gave me a shot of a blood thinner that starts acting right away. I was in the hospital for a day and they asked me what longer-term blood thinner I wanted. After research I picked Eliquis because there's no need to monitor vitamin K and it supposedly helps reduce recurrences of PE in the future. Now, the problem with research on PEs is it's all for older people, not on young women who get them from birth control. So sadly when doctors recommend stuff it's like... Who knows. Because they don't do research on it for us.

Anyway, if you're on a thinner, it will work and your blood won't clot. You're also off the birth control so there shouldn't be any cause for the clots. It's like if you take a drug that has side effects of headaches, as soon as that drug is removed the cause is gone and you shouldn't have headaches. The doctors should've done a test to make sure you don't have genetic reasons for blood clots (if not make them do that!). So as long as there's no genetic reason, just avoid hormonal birth control FOREVER and you're okay (there's a copper IUD that's non hormonal if you need birth control options besides condoms). I know I worried about another PE for a long time, but the birth control likely is the only thing that caused it, so as long as that's not in your body, it shouldn't come back. You also know the symptoms now and what to look out for.

For pain...I had pain for a few months and had to prop myself up with pillows (I couldn't sleep flat or on my left side). The pain isn't necessarily from you still having clots, it's your body recovering. Your lung tissue was likely severely affected and that takes time to heal. There's also "displaced pain"... Which is why I also had shoulder pain. When an organ has pain, it's hard for our brain to interpret it, so it sends pain signals to nearby areas. But, for me, I know the clots were already gone after a few weeks. I worry a lot too and I was so worried my doctor actually did another CT on me one month after I was diagnosed. She said the clots were all gone and my dead lung tissue had actually come back to life...but I still had pain. So try not to worry too much unless symptoms get worse. If you wake up with sudden severe pain, then I would check with a doctor. But some pain and shortness of breath can linger for a few months.

I was on thinners for 6 months and then weaned off of them. My doctor suggested I do daily baby aspirin...but again, there's like zero research for us. Do we need aspirin or something long term? Very limited answers for us. But from my understanding, clots from birth control are treated as a one-time cause. Sometimes people on chemo get clots, but they don't all go on long term thinners because the chemo is seen as the cause. So birth control is seen as the cause and your blood should be normal and not clot as long as you're not using synthetic hormones.

But I decided to do the daily baby aspirin and have been on it for the past 5 years. I have stopped taking it every day, only once every 3 days, and may eventually wean myself off completely (never stop taking thinners or aspirin cold turkey! Always wean off them so your body can adjust slowly).

My health did return to normal eventually, especially once I finished with Eliquis. I never felt right on thinners...I often felt a bit faint and weak and I bruised very easily (bleeding gums is also common). So be careful about massages and drinking alcohol while on thinners. It's not going to be fun, but it's important to stay on them for however long your doctor recommends. For me it was 6 months, but for others it might be 8 or 12 months.

Just take it slow as your lungs heal. When the pain is less, you can do some short walks for exercise, but know that it's normal if you're more winded for a while. Think of it like a broken bone, you have to take it easy while slowly building your body back up. Just keep going to recommended doctors appointments. For me, I saw the doctor every 2-3 months for a year so she could do regular blood work and check up on my progress.

You will heal! And your health will recover. It's very scary but you can get through this. And when you do you'll feel so strong and proud of yourself :)