I was diagnosed with a provoked DVT (from a Depo shot) two months ago (in August). All was well for a few weeks - until my period started September 6th. It's now October 15th, and it has NOT STOPPED. Like, no slowing down. 5 weeks and 4 days - and counting.

I cannot describe how bad it's been - but I just got out of the hospital yesterday having to have blood transfusions. My iron is tanked. Becuase I'm only 60 days in on 90 days of Eliquis treatment for the DVT - I'm too high risk for hysterectomy.

Today, my doctors decided to do an ablation next week. They're confident that will help - at least long enough to finish my Eliquis treatment then if needed later on - I can go ahead and get the hysterectomy.

Has anyone dealt with anything similar? I've seen people on Eliquis for awhile need an ablation or hysterectomy but has anyone had to have a procedure done this early on in their treatment after DVT diagnoses/starting blood thinners?

No IUD, Progesterone, etc. I don't react well to hormones anyway, and the DVT provoked clot and all - I'm not a good candidate for any of that.

I'm 22 F and recently i was diagnosed with DVTs in my left leg. Currently on the treatment. I've read 100 stories here about DVT survivors' journeys and every survivor was diagnosed again with DVT/PE after months or years.

Since, I'm a new DVT patient there are multiple questions running in my head and i can't shut my brain off. Going through all this at such a young age and having fear of PTS along with the recurrence of DVT in future i what's making me extremely depressed. My DVT is unprovoked (i think so) that's why everything is making me more anxious. I don't wanna spend the rest of my life on meds. I already have anxiety and health anxiety. I can't stop myself from researching and reading about all this. Things have been legit difficult for me. I'm just 22 and seeing other girls doing so much better and building a career is what breaks my heart.

Has anyone here had an unprovoked DVT years ago and never experienced another clot since? Also, has anyone had DVT without it ever progressing to a PE?

Share you experiences it would really help me.

Hallo, ich habe eine bilaterale lungenembolie und eine Thrombose im Bein. Ich war im Krankenhaus weil die Schmerzen im Bein unerträglich waren. Ich wurde abgetastet vermessen etc, als ich erwähnte dass ich seit 3 Monaten eine Lungenentzündung mit pleuraergüssen habe wurde nach einem ct und herzultraschall die embolie festgestellt. Mir wurde gesagt ich solle 3 Monate Eliquis nehmen und das wie keinen kontrolltermin brauchen. Mich verunsichert das sehr weil ich mittlerweile bei jedem zwicken und stechen Panik bekomme.

50 F. Was hospitalized with DVT and PE. Had arterial thrombectomy, venous thrombectomy and then PE removal.

I just wanna smoke a cigarette. Also don’t want to die so I’m not gonna do anything to compromise my health. But the urge is there and I’m struggling to find ways to combat it. For me, it’s not the nicotine, it’s the ritual. Anyone had any luck figuring out how to combat the cravings that are solely mental?

I’ve noticed that many posts here are about clots recurring, complications, and medications not working out. While these experiences are important to talk about, they can also make people who are currently dealing with DVT feel terrified about their future.

So, if you’ve recovered from DVT, I’d love to hear your story. ❤️

How did your recovery go? Did you eventually return to your normal life? How are you doing now, months or even years later?

Whether you've finished your anticoagulants, had a smooth recovery, or simply reached a point where life feels normal again, please share your experience.

I'm not suggesting that we ignore the risks or that everyone's journey is the same. I just think we need to hear more about the positive outcomes, too.

Your story might be exactly the reassurance someone newly diagnosed with DVT needs today. ❤️

I'm in a situation where I'm having chronic daily headaches, vision, hearing issues for close to a year now. No Dr's seem to have any clue what's going on. Symptoms began after a cervical steroid injection but Dr's don't think it's a csf leak. I know a clot/stroke is a rare but real possibility of the injections. I had a brain mri but can't tolerate contrast.... However it was normal. I was also on high dose of prednisone right before the injection and read that could be a risk factor as well as being on birth control.

I'm going to talk to my Drs but anticipate them thinking a CVST isn't possible. Has anyone here been diagnosed after long term symptoms? I relate with many of the things I see on this page but this seems so long to have symptoms vs others. Thank you

I’m alittle over 5 weeks out from my diagnosis of multiple PE’s in both lungs with infarction on the right side. The first week after my diagnosis I had extreme pain in my right shoulder and back that caused another ER visit and was given pain meds for relief. After a few days that subsided and the pain resolved. Fast forward a week ago I went back to urgent care due to shortness of breath and we did a repeat CT with contrast. I was told the clots are healing well and the infarct is slightly larger but not concerning. Well as of yesterday I started having similar pain on the left side of my back, ribs, chest, and neck. Has anyone else experienced this? I’m trying to avoid the hospital as the scan and bloodwork looked good but I’m frustrated and confused as to why I’m having pain again.

It’s surreal to me as I’m a 26 year old female with no genetic markers for clotting disorders however we suspect birth control was the cause of this. I was only on the birth control for 3 months before this happened, ladies beware of birth control containing estrogen. Any advice is appreciated, I’m very anxious and the doctors haven’t prepared me on what to expect.

Never met or talked to another person with it :) hello!

I’ve only ever done one of these when they did a thrombectomy and I reclotted after this soon after as I was postpartum. They ruled me out for MTS but another hospital wants to double check if I have MTS and they want to do a venogram and possibly another thrombectomy. How was the venogram itself? And I’m super scared of reclotting again. I wonder if anyone can share their experience. Thanks

Has anyone ever had a recurrence of their DVT symptoms after being put on thinners?

Back in June I had a terrible pain in my thigh/bikini line and my leg was weak and swollen, and had small varicose veins appeared in the upper thigh, and generally was just painful, hot and stressed. After a Doppler, I was diagnosed with DVT in my groin and put on apixaban straight away, which did a great job and within 2-3 weeks I was able to walk, cycle and go about life again with only the odd twinge of pain now and again.

About 3 weeks ago, I started to experience all the same symptoms as I mention above again (not quite as bad but still very noticeable and uncomfortable). I can’t walk a long way without a cane. I went to the ER on advice from my GP, they did another Doppler and it showed that the original clot is much reduced but still in the process of resolving, there is a lot of scarring and possible permanent damage to the vessels that were blocked originally. But most importantly, there are NO new clots to be seen at all. So they sent me home again to continue with the apixaban as I have been.

I’m really confused and upset because I feel like I’d just got my life back a bit and now I’m back to square one and almost housebound. Does anyone have any experience or advice about this situation?

For additional info, I do currently have cancer and am being treated with chemo which I know are risk factors for clots but as I said, they told me I don’t have any new ones! I don’t understand how it could’ve gotten so much better and then reared its ugly head again.

I (31yo Male) survived a massive PE two years ago. I take aspirin daily no major issues. Had some residual scaring so I deal with asthma and random pain in my right lung. Went the hospital two weeks for a separate issue got an IV and all was good. A few days later my arm started hurting, swelling, and bruising along the vein tracks. Went back to the ER, got told by a doctor that I was overthinking and just being scared and that it’s nothing to worry about. He refused to the D-Dimer, CBC, PTT, and PT blood work up and to come back in two days for an ultrasound … Two days later, my right lung and chest started hurting. Got the ultrasound and was told I’d be called later. The on call physician, different from the first one, calls me back says come back to the ER immediately I am in critical condition and need to be treated STAT. Big surprise, I have clot in my entire arm and now it’s a developed into a PE as well. All because of a fucking IV and a doctor who didn’t take me seriously. I’m so confused and upset.

Xarelto 20 since May. Just sneezed and got a subconjunctival bleed in a capillary of my eye. That’s just great.

Hi everyone.

Please delete if not appropriate.

I posted last week that I had a HIDA scan (16 days ago). The results were unremarkable, however, I left with a nasty looking bruise at the site of my IV. I did feel a slight pinch when the IV was put in and then a warm feeling, but nothing too bad.

For the next week, I rested my arm and used a heating pad to help the bruise do its thing. The bruise did get pretty gnarly looking, but ultimately it is fading with the help of heat and Motrin. I can barely see it today.

I’m posting to see if anyone has had any similar experiences. It has been 16 days since the IV/scan and I am very sore near where the IV and bruise were on my forearm. I am also feeling sore around my (inner) elbow and bicep. My primary care physician could not see me today and advised me to go to the emergency department if the pain was not getting better- so I went and a sonogram did not show anything worrisome. Unremarkable scan. The doctors just said to continue heat and Motrin and to keep an eye out for worsening symptoms.

Has anyone ever had to deal with a sore arm (or area near where an IV was placed) more than two weeks after an IV? How long did it take for the soreness to go away? Any tips or experiences would be helpful to ease my worries (despite a clear sono). Thank you!!

I just found this community a few minutes ago.
It’s amazing to see other people who are going through the same experiences as I have been.

I unfortunately have gotten a clot in a vein in my head in March of this year so 7 months ago.

I was taking eliquis for five years already since my first clot in my leg. (So this is the second clot I’ve gotten)

When they tested my apixaban levels they came to speak to me that I skipped too many doses and explained to them that I didn’t skip any doses and after testing and trials it’s been proven that eliquis does not affect my blood in any way.

Thank God I’m on Clexane shots and that works on me and I’ve been on the shots since but my hematologist tell me I’m not supposed to stay on shots for life. He wants me to go on other blood thinning pills but I’m afraid.

A reason I think this also might be happening is that I have a really bad stomach I have diarrhea and go to the bathroom a lot and was told it’s IBS but I’m going to go get tested for Crohns just to make sure. That might be an explanation for a pill not getting absorbed into the blood stream.

I’m curious to see if anyone else has experienced this too and if you found out how and why it happened to you.

Be safe and healthy everyone ❤️

Hello all,

I was having some panic attacks lately, i went to emergency as if i was having panic attack. ECG was fine. Next day, i visited a cardiologist to check. He made ECG, ECHO, Holter (24 hour), Effort Test (Stress test). Results were fine. He described Dideral.

3 week after i started to have pains on my back and chest but more like stuck muscle but then my left arm started to get a little numb, as if i was losing power of it but i actually can do all psychial activies, my legs were also hurting too. So i decided to go Emergency service to check again. ECG was fine, blood pressure was fine (130/80). They also made some several blood tests. There was one result which was high, which is D-Dimer, result came up 685. He suggested me to visit
pulmonologist. She checked and she said this test value is pretty low for PE. She listened my chest and my back, checked my oxygen level (%99). Required a Chest X-Ray.

She said there is a little bronchitis in my left long under. She said there is a new viral infection lately that it doesnt make fever, running nose but it causes body aches and it may turn pneumonia. She said if you feel like your oxygen level is low or you struggle to breath then come to hospital, you have to stay some days in hospital.

My issue is now, i feel panicked due D-Dimer. I feel my arms numb or weak, my feets are getting numb.

It’s been 5 months since I was diagnosed with a PE in my left lower lung but sometimes I get twinges of soreness on that side. Not as bad as it was when diagnosed and it goes away right away but it makes my anxiety so bad. My doctor said my clots are gone but I’m always fearful of them returning…. Anyone else experience pain where your clot was but no other symptoms and it goes away?

https://www.mcpiqojournal.org/article/S2542-4548(24)00066-3/fulltext00066-3/fulltext)

Here is a link to my case file that was published in the Mayo Clinic. Hard to believe it has almost been 3 years since my surgery. Happy to answer any questions if anyone is going through anything similar

Its in the back of my claf, it doesn't feels like muscles pain, more like tendon pain. ChatGPT gave me a few tests and according to these test it dose look like the tendon.

Its about 4 fingers above the heel, towards the external side (not right in the middle).

Has anyone experienced something like that in relation to a clot?

The pain is really bad that I can't step on this leg.

Also got my period yesterday so maybe its related 🤷‍♀️

Hey everyone,

Got diagnosed with a proximal DVT in my popliteal vein. The DVT is only partially blocking the vein, still have blood flow. I have a history of PEs dating back to 2012 where I spent 5 days in the hospital. I have started Eliquis last night at the ER, and have done the dosages today.

My question, how do I handle the anxiety surrounding the potential for the clot to break off and travel to my lungs again? My doctor said that now that Eliquis is onboard the risk is substantially low. However, I want to hear from others on how you have all handled it.

Any tips to ease my troubled mind would be great!

How soon after your pulmonary embolism did your doctor clear you to resume massage? Just relaxation on shoulders, no deep tissue and no legs.

I understand everyone’s situation is different.

Just curious what an average time line looks like.

Visit www.worldthrombosisday.org

Thank you for your support! Together, let's work to save lives.

Has anyone received treatment for clots from the Mayo Clinic? I feel like this is my best option right now.

so starting from the beginning.. 9 years ago at 20 years old 4 weeks postpartum I developed a massive DVT in my left leg. After multiple procedures the clot kept returning. I was sent home one lovenox injections and the clot was gone within 3 months. I was clot free for all these years up until January of last year because I was taken off of eliquis in 2024. the second clot was in my femoral vein in my left leg. but through all of those years with no clot, my leg was always had pain and swelling that would come and go.

about a month after the clot diagnosis, I needed emergency gallbladder surgery. all the drs felt it was necessary to put an IVC filter so they did.

surgery went well but the dr who put in the IVC filter left and the new one who took me on as a patient decided to leave the filter in longer because through all of this, I was scheduled to have a hysterectomy in December.

hysterectomy went well and my dr finally scheduled to remove my IVC filter in march of this year and he wanted to check for compression in my veins due to having developed 2 clots in the same leg.

he was unsuccessful removing the IVC filter. it was performed in his surgical center or whatever it’s called and he said he didn’t have the tools to fit the anatomy of my veins to be able to reach the filter. so we scheduled a month later in the hospital.

he removed the filter and checked for compression. my iliac vein was 100% occluded with scar tissue. he decided to place 2 stents. I literally woke up screaming during the procedure. it was so painful.

2 months later in June, I wake up in the middle of the night with my leg completely numb. i got up and shook it off but my leg was really swollen and painful. I call my drs office, they said I had a follow up in a month so I should wait. I insisted I needed to be seen sooner so they brought me in the next week. I explain to my dr what happened. I told him the pain and swelling starts in my hip/butt, down my leg. he played my symptoms off as sciatica, told me to buy a ball and roll my butt on it and that I’ll have an ultrasound a month later. I wasn’t happy with that, I wanted an ultrasound the same day but the pain was starting to subside just a bit but would come and go in waves so i decided to wait. ultrasound day comes and the tech tells me he needs to call the Dr because there’s no blood flow through my stents. they made me wait in the lobby while they got ahold of him meanwhile im bawling my eyes out. the tech comes back and tells me that the Dr said he’ll call me later. he in fact did not call me so I called the next day multiple times until they finally told me they can bring me in the next week. I go in and he tells me that there is no flow through my stents and they think it’s a clot but needed a ct scan to be sure. I had to wait a whole month for a ct scan cause no one had a sooner appt. ct scan showed a large thrombus occluding my stents. (this happened while i was on eliquis. I asked to be switched to lovenox and they agreed.)

so then my dr scheduled me for a thrombectomy a MONTH later which was just this past September. keep in mind my symptoms started in June. so thrombectomy day comes and surprise surprise, he couldnt. he tried to access my stents through both groins and was unsuccessful. i cried so hard. he said he would try again through the back of my knee another month later, which was last Thursday.

he was unsuccessful yet again. he reached my stents but he said at this point the clot is chronic and he couldn’t remove it. He told my husband and I that at this point there’s nothing else that can be done and that I will have to live with the pain and swelling. I am not happy with this answer at all. I feel defeated. I don’t want anymore procedures but I also don’t want to live in pain because Im only 30 years old, I have 2 beautiful children and this pain really affects my quality of life. im still in a lot of pain from this last failed thrombectomy but my family has been doing their research and it seems like the Mayo clinic in Arizona can really help me. So my question is, has anyone been there? What was your experience like?
everything I read online was very positive and after asking a bunch of questions, it seems I’m a good candidate to get treatment there. It gave me a little hope but I don’t wanna get too excited either. sorry for the loooong post. it’s been a rough couple of years of surgeries and procedures. I just wanna feel good and happy again. 🫩

Hello community, just finished my first month on Eliquis blood thinners. Was diagnosed with two significant (3-4 inches each) DVT blockages of both deep veins in my lower right leg in the ER on September 10. Already scheduled repeat ultrasound for Dec 7, and hematologist will be taking many vials of blood first week in November to rule out anything hereditary.

Meanwhile, I’m weaning off the HRT I started in June, in case it was a contributing factor. 🧐 Supposedly the estradiol patches I was using have a much lower chance of contributing to extra clotting or tumors, but not zero chance.

Wondering if anyone else here has stayed on HRT or gone off it while the clots are reabsorbing?? And then were you able to restart again once all the clotting cleared, if you stopped?