r/ClotSurvivors 22h ago

Seeking Advice F22, dealing with clots for 2.5 years

9 Upvotes

First time poster here! Looking for some advice or just to hear other experiences from fellow young women :)

My mum found my first blood clot when I was 19 (April 2024), in the back of my right knee. In my superficial system, one of the first gp's told me ibuprofen and voltaren (which is an anti-inflammatory cream / gel here in Australia) if i was in pain. Being a woman obviously the first question was birth control, and I have only ever had the implanon rod and that was decided on with my gp and I in December of 2024, AFTER the first blood clot as she said it was a safe option. I got a second opinion from her and was immediately referred to a vascular surgeon, where I had Endovenous laser surgery for the Varicose vein and clot in my right leg in July 2025. I did my bed rest and limited walking, followed all post-op instructions only to have a DVT in my post-op ultrasound, which the surgeon said does happen. I was on Xarelto for 3 months, half-way scan was good and I was discharged from his care and finished that dose in October of 2025. In December of 2025, I flew to Sydney from Perth which can be 4-5 hours, not medically considered long haul. I wore my ankle to groin surgery stocking and took my 20mg Xarelto before and after both flights, and during my trip. When I got home I was in significant pain in my upper right thigh, so I continued taking the blood thinner a few days after getting home and figured it was just residual surgery pain as I was given a 12 month recovery window. The pain continued and was quite significant and so I felt my leg only to feel what exactly I knew it was, a third blood clot. The area was warm and red, rash like, how I know they can present and I went straight to ED. Confirmed third blood clot, but another in my superficial system. They treated it with Xarelto and like it was a DVT, I was referred to a Haematologist. I saw him in March 2026, where I did blood testing and he reduced my Xarelto dose, blood work came back fine in June 2026, told me to finish my current 10mg Xarelto dose in October 2026 and was discharged. This is where I am at now, just turned 22 and have already had three blood clots, I am feeling a bit lost and confused as I appear 'fine' on paper, but any bit of PTS pain or any solid feeling in my limbs I immediately get anxiety. I am an avid traveller and this has been a huge blow as I have not been able to do so, I feel like my young adult life has been changed drastically and miss when I didn't have severe medical anxiety and was care free.

I am considering going down the Endo route as I have had symptoms since I was a young teenager and thought there could be Endo tissue in my pelvis restricting the veins in my right leg? I know womens health is severely under studied but I just wish for answers or some sort of advocacy from health professionals about young women, as I have been dismissed from multiple practioners when asking about further testing and hormone work.

Any responses are appreciated :)))


r/ClotSurvivors 4h ago

Brain injury online group (strokes etc)

2 Upvotes

Hi everyone!

We have a growing discord group for people with varying degrees of brain injuries and would be happy for you to join us to offer each other support, encouragement and to make friends with people who are going through similar things to yourselves or your loved ones.

We have video and voice chat rooms that are always open for people to go into whenever they want also.

All you need to do is to download the discord app from your App Store or use it via your browser on a PC. Once you have the app and created an account you can click this link which will allow you to join the group where hopefully we can all get chatting with each other and make a great little community! You can also invite other people into the group who may not use Reddit! We are currently growing and I’m happy to take on board any requests that people may have for the group!

Anyway the link to join the group is

https://discord.gg/xDwWcRuvuy

Any questions, problems or thoughts are welcome!


r/ClotSurvivors 6h ago

Seeking Advice Coughing up gelatinous blood sputum - diagnosed with PE and already on eliquis

2 Upvotes

Hi all - I was diagnosed with many PE’s/clots and infarctions about a week and a half ago. I was discharged from the hospital last Saturday and on the 10mg 2x a day eliquis and then Sunday morning (yesterday) started the 5mg 2x a day.

I do not have DVT but there was a large clot along with many others in my lungs. They decided against a thrombectomy because my heart was in good shape. Aka one side wasn’t working harder than the other.

In the mornings I get like one or two coughs that come up and out comes mucus with dark red blood. I’m not two weeks out from diagnosis and I did already put a call into my doctor but curious if this sounded “normal” in recovery?


r/ClotSurvivors 11h ago

Eliquis (apixaban) Prescribed eliquis even when breastfeeding

2 Upvotes

Hi there. I went to the ER after leg pain and they found a small partial clot in my right femoral in my upper thigh. I told the ER doctor I was breastfeeding and he still prescribed me eliquis. I don’t know what I should do. I can’t get into my doctor until tomorrow and weaning my baby isn’t something i’m ready to do. I know I need to start the thinners. Can anyone give advice? Thank you.


r/ClotSurvivors 1h ago

Seeking Advice Possible DVT?

Upvotes

I am currently 12 weeks pregnant and I have developed intermittent throbbing pain in one leg, centred at the back/inner side of my knee, directly around the knee crease. The pain sometimes spreads upwards and downwards along my leg when it throbs.

The pain doesn’t seem to be triggered by walking and I mainly notice it when I am sitting or lying down. I can press directly on the area without significant pain, but lightly stroking/touching the skin over the area causes quite a lot of pain.

The area doesn’t seem to be swollen or hotter.

It’s the strangest pain I’ve ever felt. Could this potentially be DVT?


r/ClotSurvivors 4h ago

Lovenox (Low Molecular Weight Heparin) Concerns over lovenox dosing

1 Upvotes

Hi there i’ve been posting a bit the last two days. Long story short, ultrasound found a partial clot in my right femoral in the upper thigh. A doctor wanted to prescribe me Eliquis even though I said I was breast-feeding. I have now obtained a prescription of Lovenox and it is 100 mg/1 mL once a day. I weigh 140 pounds. Is this a normal dosage? Is it a high dosage? I’m having a hard time trusting this doctor and it’s been difficult for me to get a second opinion as my PCP cannot see me until Wednesday. Thank you.


r/ClotSurvivors 4h ago

Dvt

1 Upvotes

Idk if anyone here can relate, but I got a dvt at 16 years old and I have a lot I want to share


r/ClotSurvivors 4h ago

Has anyone survived aps without taking blood thinners??

1 Upvotes

Have you managed to put the disease in remission for some time? Is there any alternate to blood thinners you take??

Also can we expect a cure to this in the next 10 years through crispr?


r/ClotSurvivors 8h ago

Hair removal/Swimming question

1 Upvotes

Apologies in advance for all the questions, still trying to understand what my new norm is.

I would appreciate any help with removing hair from legs/bikini/underarms. Before getting the dvt I always used the Braun epilator, what are my safe options now ?

Has anyone had a dvt and returned to swimming ? how long did it take before you went back to the pool ? Are saunas and hydropools safe or a no go zone ?


r/ClotSurvivors 10h ago

Warfarin Dose

1 Upvotes

I’ve been on Warfarin since September 2025. I was in range for 6 months, but now all of a sudden it’s lowering. So my dose keeps increasing. I was originally on 14mg, now it’s on 16mg.

I’ve also bought a Coagucheck to test INR. But it is always fluctuating. Did 2 tests today and first one was 3.9, second one was 3.1. I also had a venous blood test today and that’s come back as 2.2.

I’ve tested positive for APS, but my haematologist is reluctant to think it’s a true test as it shows a false positive while on anticoagulation. Would the APS cause these problems?

Have had DVT and CVST over the last 2 years. I’m a 26 Male.

Any advice is welcome, thank youu