Recently diagnosed PE and scared

[Shavorne]

Recently diagnosed with multiple PE bilaterally. I'm struggling with coming to terms with this. I'm 42 and was told it was due to the contraceptive pill. I have started to take 30mg of rivaroxaban a day. I was ok initially but feeling nauseated and have stomach pain and diarrhoea. Is this normal at all? Feeling very lost and afraid that PE is not the full picture. I have lost a stone since struggling with PE symptoms.. is this normal?

[Armyguy]

Hi! I can understand your feelings with the PE, it can be scary. I had one December 2018, I had one in my right lung. Was not fun at all. I was only 33 at the time. I am a guy as well so our reasons for having it are different, mine they never discovered the cause but I am on blood thinners for life now. Just hang in there. Lost my appetite as well during all of that with my PE. I gained it all back within a few weeks. Just hang in there. You're not alone, you're on the right meds, you now know the cause. It's highly unlikely that you'll reclot on a thinner. Just try and rest.

[Shavorne in reply to Armyguy]

Thank you. You've no idea how much better I feel reading that. I was dismissed by my gp for months and they kept saying it was anxiety and giving me wellbeing advice. I would leave my surgery crying.

I need to accept it to deal with it but I feel like I'm never going to return to what I love doing.. I.e. mountain biking.. hill walking. I'm just gobsmacked this has happened and no one tells you how it affects you mentally. Feel so alone.

[Armyguy in reply to Shavorne]

O trust me I am in the same boat as you. It can feel super lonely. You just gotta keep moving along!

[Shavorne in reply to Armyguy]

Thanks Armyguy. Means a lot that you replied. Here if you need to talk too.

[Hidden]

It is scary, and yes, tummy issues are not uncommon on rivaroxaban - you'll be better when you drop down to 20mg/day, which you probably will in a couple of weeks. Make sure you take your pills on a full tummy - I was told AT LEAST a full slice of toast - which helps with the digestive problems. If you really can't cope, ring your consultant and say - rivaroxaban doesn't suit everyone, and you may need a different anticoagulant. It is scary, but you'll be fine.

[Shavorne in reply to Hidden]

Thank you so much. That really puts my mind at rest. Starting to convince myself something else is going on. Hard to rest when your hearts racing like it's on a treadmill and you cant decide if it's you being anxious or your body on overload...

[Hidden in reply to Shavorne]

I think anxiety is quite the worst problem for those of us who have had PEs, and I am never sure quite how much or consultants realise this!

[Singmysong in reply to Shavorne]

Hi shavorne anxiety is perfectly normal as you are asking why me why has this happened is there something else wrong with me? I had the same in 2019 .. a roller coaster of a year.

Do let the people around you know how you are feeling I did with my manager at work and my family.. you will find can support you . Part of the battle us getting your head around it .

There’s so very little investigation that goes into about why we have these blood disorders which adds to the anxiety . The consultant I saw referred to me having sticky blood but impossible to say exactly what caused it or if there was a specific blood disorder which they couldn’t test for as that would mean thousands from tests by way of process of elimination and the nhs don’t have the budget for that .. which I might have that I had to come away and ask doctor google the rest .

A private doctor may be able to get to the bottom of it.

It is worrying but don’t let it beat you that’s the main thing carry on with life and exercise just take more around yourself ifestyle and don’t give yourself things to do which are too stressful. I’ve learnt to slow down and say to my self that that is ok as bd that I’m putting myself first.

Most of all I found slot of comfort and support in this community online . Do keep sharing.

[Shavorne in reply to Singmysong]

Thank you. That really helps. I feel like most people dont 'get it'.

When people say how are you feeling.. I dont know how to reply.

Knowing most people are just ticking a box in that theyve asked but you know they dont really care about the answer. Are you any better? That question hurts. I feel angry.

I was cycling 20 miles a weeks.. never drank or smoked. Always tried to do what's right by people and then you sit wondering why me?

My Gp creates more anxiety than they resolve. They are incompetent. The receptionist put the phone down on me when I started crying and begging to see the doctor.

A PE is scary. The symptoms are scary and I felt like I was being watched to drown.

I've asked for some counselling support through work. I'm hoping it helps.

I appreciate your kind words and the time you've taken to reply. X thank you. It means a lot.

[FatFairNFifty-ish in reply to Shavorne]

I want to thank you for asking your questions.

I was diagnosed with extensive pe to both lings and a saddle embolism...

This all happened on Dec 16th and I was delighted to be discharged from hospital on the 23rd.

Your question a d the replies given bring me some hope and reassurance.

Thank you

[Shavorne in reply to FatFairNFifty-ish]

I hope you start to feel a bit brighter soon. I say brighter because it can feel very dark.. and 'better' isnt really what we feel straighter after a PE. X I dont anyway. My battle is the mental side of things and realising no one understands.

[FatFairNFifty-ish in reply to Shavorne]

I understand, the mental side of things can be very very dark indeed.

I don't feel ill, just pretty scared tbh. And tired... really really tired.

Trust me. There will be many many folks who do understand.

I don't think my friends understand how I'm feeling... but then, although I knew my best friend had life threatening cancer, I couldn't truly understand how she felt and how it affected (and continues to affect) her mentally. Perhaps it's unrealistic to expect my friends to understand how I am feeling.

I like the term brighter, because that's appropriate.

I hope that you are feeling brighter each day x

[Shavorne in reply to FatFairNFifty-ish]

Thank you x