Hiya everyone, hope you’re OK. I’ve been MIA recently as I’ve recently been diagnosed with extensive blood clots in and around my groin. I’ve got 3 or 4 large clumps of clots in my femoral vein and external iliac… so at least one clump of clots made it into the big vein that goes back to your heart, which is scary. It’s something called Phlegmasia Cerulea Dolens, but from now on I’ll call it PCD as it’s easier! It’s a rare, potentially life threatening version of DVT where you’re dealing with large, deep clots.
I’ve been sharing quite a lot of my journey on my Instagram stories and I shared a brief overview on my Facebook page, but I wanted to get everything down in one place and share my story in the hopes of raising awareness. It’s taken me almost a month to feel ready to share all of this because it’s been hell. I’ve only shared absolutely everything with my husband and best friends… and some family. Although it turns out my business was shared with folk I haven’t seen in years, as I want nothing to do with them, before I felt comfortable sharing. Now, I’m in a place to share it in public they can find out and gossip all they like. I’m not here for fake concern with people who only want to collect information, so they can chat rubbish about it.
This was an unprovoked clot, which means there’s no reason for it, it just seems to happen. I don’t have any of the risk factors of DVT. I’m only 30. Apparently some people just have blood which is more “clotty”. However, I have since found out that there’s a history of blood clots on both sides of my family.
I know I have EDS which causes a lot of joint pain, dislocations, subluxations, arthritis, hypermobility. It’s a connective tissue disorder so there’s a lot more to it. However, I am used to that pain and those flare ups and I can get through them. I never for one moment anticipated that I would get a blood clot. Even though I have joint issues, I’m active. I exercise 5 days a week and go for a walk every day usually.
SO, LET’S GO BACK TO THE BEGINNING…
It took me quite a few weeks to remember this, but I actually had calf pain weeks ago. However, it went away, so I thought nothing more of it. The more I focus on it, the more I realise it was unusual for me because it was only in one leg. Since I exercise, I get pulled muscles sometimes of course. But, this was different because I hadn’t done strenuous exercise the day before, just my normal workout. That and the fact it was only in one leg too.
Since I had no other risk factors of DVT, it didn’t cross my mind that it could be that. Fast forward a few weeks and I get the same pain in my calf. Then it started moving up my leg, up through the back of my thigh, then into my groin and round the side and front of my thigh too.
Around this time, I got bursitis in my right hip, so I was still working out, but had to modify. Even still, we were walking daily and I was still up and about, not just laying in bed. I was suffering more and more subluxations in my right hip which aggravated the tissues around it. It then spread to my coccyx. When the pain in my calf returned, I just assumed it was because I was walking strangely to compensate for my hip, but then the pain started spreading to my coccyx. I do think the two were unrelated, I think I had two problems at once and I was just assuming this was a horrendous EDS flare up. Right up until my leg changed colour and went cold, I still thought this was just EDS.
I’ll try and describe the pain for you, but on a few occasions I nearly passed out, so there may be gaps. It started like a sore, achey pulled muscle in my calf. If I tried to straighten it, it would threaten to cramp. As it worked up the back of my thigh it was like a hot knife was slicing me down my thigh. My thigh muscles were also sore and achey, but the hot knife pain was way worse. One morning I got up and put weight on my leg… I screamed so loudly as the pain shot through my leg. It was just horrific. I couldn’t weight-bear properly, straighten my leg properly. The pain spread to the inside of my thigh, this bruised sharp feeling. In my groin it became a sharp, pulling pain that also felt tender and bruised.
Let me tell you, I am used to a lot of body pain, but this was something else. It was the absolute worst pain of my life. I was walking with a crutch, with my leg half bent as I couldn’t even straighten it. My body was hunched over, it was absolute agony. The overwhelming sharp pain, tenderness, stabbing, bruised feeling. If I could give it a number, its was 100/10.
WHAT HAPPENED NEXT
On Friday 3rd September, my husband was going to massage my thigh/hip as it was so sore. He helped me get my leggings off and my entire left leg was purple/red and cold. He tried rubbing it to see if it was just cold. It would go a bit more normal coloured, but as soon as he stopped it would go purple again.
This photo was taken just after I took my trousers off. As you can see, it’s a different colour to my other leg. Because I’d been in so much pain with my hips (my left one had also started hurting), I had just been icing my hip for 20 mins. I also iced the front of my thigh as it was so painful. We thought maybe this was a reaction to the cold, but it seemed odd that it was my whole leg.
We tried for a good half hour to get it to return to normal, but it wasn’t happening. Around 11pm I ended up in A&E, unable to walk. Due to C*vid restrictions, my husband couldn’t stay, so he went home and left me there. I didn’t particularly want to go to hospital on a Friday night as I thought it would be packed. It was actually quiet and I was seen quickly.
However, this is where it gets shit. This doctor I saw was awful. They didn’t give me a blood test (I know there’s a shortage of tubes, but evidently there was something wrong with blood flow to my leg). I explained that I have a condition where I suffer partial dislocations in my hip, but that my hips were not dislocated currently. I think I told him 4/5 times that I could feel my hips were in the right position. But he was obsessed with that, he didn’t examine me properly. He tried for ages to find a pulse in my foot and couldn’t seem to find one, but didn’t mention it. I was sent for a hip x-ray and told my hips weren’t dislocated, like I’d already said.
This doctor then comes back, hands behind his back, looking at the ceiling going “don’t know what to do with you. It’s probably just spasming blood vessels as you’re in pain. You can go home now”.
I rang my husband to pick me up and was left to struggle getting my socks and trousers back on. I couldn’t reach my feet due to the pain, the nurse refused to give me the call bell, the bed was high so I had to almost jump off and they wouldn’t help me out. Then, I had to hobble back out to my husband and the car with no help. They took the wheelchair I had and left me. My husband has since said that when he got there the same person who signed me in met him. He said “oh have you come for an update?” and my husband said no they’ve said I can go. The man was very surprised by this because he knew my symptoms from when I came in.
We finally got home at around 2am and I wrapped my leg in heat pads and slept with them on to try and warm my leg up.
LATER THAT MORNING
When I woke up with my heat pads on, my leg was a normal-ish colour. I got up, thought my calf looked a bit swollen, asked my husband who agreed. About 2 minutes after removing the heat pads, my leg was purple and cold again and this time my whole leg was swollen. I tried standing up to have a shower, but it was so horrifically painful I almost passed out from the pain. I was in tears and my husband had to go and get me a chair to sit on. Luckily the previous owners of our house were an elderly couple, so they had a shower chair that hooked over a railing. We unhooked it when we moved in, but it was enough that I could sit and finish my shower.
Then, I contacted 111. A lovely doctor rang me back within 15 minutes and told me to go straight back to A&E as they needed to rethink what was going on as it was a vascular issue.
Just before I went back to the hospital, I took this photo of my leg. You can clearly see it’s angry looking, shiny and swollen.
SECOND TRIP TO A&E…
This time round, they did a blood test and I had a proper examination. After a couple of hours wait I was taken to a side room and told I had a large, deep blood clot in my leg, they thought it was in my groin, but weren’t 100%. I was wheeled back to the waiting room and I was trying so hard to keep it together, but I ended up crying in front of everyone in the waiting room. My husband had had to go back home, so I was on my own.
Around 10 minutes later, I was taken to another side room and put on a bed. They got an ultrasound machine out and the doctor showed me my right side and my left to compare. It was actually interesting to see the difference, but scary as hell. On the right leg (no blood clot) you could see the artery and vein and as he pushed the probe down you saw the vein squish. However, on my left leg the vein wouldn’t squish as it was blocked.
My blood tests showed that I tested positive for D-Dimer, my Fibrinogen and white blood cells were high and my c reactive protein was through the roof.
I was admitted immediately and taken up to the Acute Assessment Unit. Since it was the weekend, I knew I’d be there for a couple of nights. The pain was insane and even oramorph wasn’t touching it. All I could do was lay in bed with my legs up. I couldn’t even walk to the loo and had to use a commode which wasn’t pleasant.
They started me on heparin injections straight away. I had to have two a day and let me tell you, those suckers hurt! Long needles with big syringes full of stuff they were in my stomach way too sodding long. They stung like a bitch, then you’d feel it start to spread and your tummy would be so sore. The first time my legs started to ache, but after a couple of injections, that stopped.
THE NEXT COUPLE OF DAYS
The next couple of days were a bit of a blur of what they might do. Lots of different doctors all wading in and telling me something different. The only noticeable improvement in my leg is that when my leg was up in bed, it was no longer purple. The pain was the same, swelling the same and when I stood up it went purple straight away. But, this was the first sign that the injections were working. I couldn’t lift my leg, bend it or get out of the bed without picking my leg up with my hands, but I was determined to shuffle a few steps a day.
I was able to sometimes get to the loo on my own with a walker, but sometimes I’d have to use the commode still. My husband dropped me off supplies; drinks, snacks and the ipad so I could watch Sky Go and Netflix – life saver!! He was there every single day. To visit, he had to do C*vid tests daily and show he was negative and he could only stay an hour. A few times they let him stay slightly longer. We were lucky he was off work that week, so he could visit whenever. Although he was already making plans about how to visit when he went back to work the next week (if I was still in).
Treatment wise, I was told there were a few different options: continuing me on the injections I was on, they were anti-coagulant injections, so stopped my blood clotting and any more blood clots forming. These then give your body time to break down the clot itself. There are then other medications that actually break the blood clot up, I could have an operation and have a stent put in. However, the doctor thought that with my EDS this wasn’t a good option because my veins may not hold a stent. The last option was having a small procedure where they hook out the blood clot with a catheter.
I had a lot of time to think of questions and was asking the doctors so many questions to try and get reassurance as I was so scared. There are three stages of PCD. We think we caught mine at stage 1, which is good. However, I stopped reading after stage one, because stages two and three were too scary. Every hour untreated brought me closer to the next stage, where I could have lost my leg or died. PCD has a mortality of around 40%.
We still don’t know what the after effects will be as it’s just too early to tell. Post clot complications are called Post Thrombotic Syndrome. This can be swelling, pain, discolouration due to damage to the veins etc.
SECOND SCAN ON MY LEG AND TREATMENT
On the Monday after I was admitted, I had another ultrasound on my groin, thigh and up onto my tummy. The result of this was that I have “extensive clots” in my groin, lower tummy and top of my thigh. There are 3/4 large clumps of clots and the veins are distended. The fact that these clots have managed to work their way up my whole leg and we managed to stop it just before it could have started heading to my lungs/heart is so scary. I’m very lucky. There’s lots of veins that look pretty angry at the top of my thigh, over my pubic bone and on my lower tummy. When I stand a few of them are congested and lumpy.
Here’s where my clots have decided to take root!
I was told that I’d be kept in for the whole duration of the injections as they couldn’t just teach me to do them and send me home. This was due to the fact my whole leg was affected and my pain and immobility so bad. We were in a two week window where they could try injections and medication before needing to do surgery. After speaking to the vascular team, the doctors decided to change my injections to another medication. This second medication had a longer half life and less side effects. Mind you, I still had terrible side effects. That day I ended up having 3 injections! My poor tummy, nurses kept arriving with them and I was like “oh not again!”
Here are just a few of the bruises and lumps from the injections. This was after a few days, I had way more on both this side and the other side of my tummy by the end.
The communication between the patients, doctors and nurses was not great I have to say. The second ward I was on was so short staffed. There’s an awful lot I could say about my time on that ward. The drama of the patients opposite me kicking off at anything and everything, bed bells going unanswered for 30+ minutes, leaving the medicine cabinet unlocked in our room for 25 mins… I got to the point where I was questioning everything. You shouldn’t be in hospital not trusting them to take care of you, but I was being told so many different things, I didn’t know what to believe.
My whole hospital stay was such a rollercoaster. I had days where my pain was more manageable and I was able to walk to the loo. One night I tried sitting in the washroom to do my teeth, but my pain flared really badly and I hobbled back to the bed crying and needing oramorph to help it settle. It was like a burning, stabbing pain above my knee along with the normal groin pain. Absolutely awful.
The next day this had settled slightly, so my husband helped me have a shower. Oh my goodness, I was glad to be clean, but it was incredibly traumatic. I used my walker to get to the shower room, but it was so badly designed the shower chair wasn’t even under the water, but along another wall. So, I had to stand under the water which made my pain flare again all over my groin and thigh. I nearly passed out from pain again and burst into tears as it felt like I was going to have to climb a mountain to get back to physical fitness.
There was no way I could walk back to the bed, so my husband went to find a nurse and wheelchair. The only thing they could find was a commode, so wrapped in my towel, I was wheeled back to my bed crying on a commode. That was the lowest moment. I just wanted to go home, but I couldn’t even stand up. I had to have lots of oramorph again, but it wasn’t really helping.
That day I had to go back to using the commode and I said to myself there’s no way I’m even thinking of going home until I can walk to the loo without that searing pain and I can sit in the chair next to the bed. I had also been setting myself little goals each day. When I woke up I’d wiggle my toes, try and see if my calf still hurt. Then it got to be that I could lift my lower leg, then I was trying to pull my leg towards my chest a little bit more each day. The tightness and pain from the swelling was intense. But, I needed to see progress, no matter how small, each day.
DAY OF DISCHARGE
I’d been having some horrid side effects to the injections. Goosebumps, freezing cold, but boiling hot. I was stuck to the bed with sweat, had cramping and waves of pain, toilet issues, headaches. Honestly, I felt so rough. I’d managed to walk to the loo and sit in the chair next to the bed, so I felt a lot better than the day before.
However, more drama was to come. It suddenly went from 0-100-0. I didn’t even know for definite I was going home, then all of a sudden they were trying to get me out, I know they needed the bed, but they wanted me to sit in the discharge lounge for 6 hours to wait for my medication! Luckily my husband was there, as was the nurse who all stood up for me and said there’s no way I can do that. I had to keep my leg elevated at a particularly angle, which wasn’t sitting and wasn’t fully laying down. Anything else was so uncomfortable and made my leg go purple.
They let me keep the bed and the pharmacist came to speak to me. They were trying to give me every medication I’m on and I was like “I don’t need them all, I have them at home! Just give me the new ones please!!”
They somehow managed to delete me off the system for ordering medication, but eventually we got there and I was allowed home at 16:30. In the end they were happy for me to go with two injections remaining. They arranged for the district nurse to come out to me for the next two days to administer the injections.
FIRST FEW DAYS BACK HOME
That evening I wanted nothing more than to get comfy in bed, but I couldn’t get an angle that was comfortable with my legs. They have to stay elevated and I also still couldn’t lay down flat as it pulled my groin. I asked my osteopath for some advice and she mentioned about using a travel pillow to cradle my leg up onto the cushions. That worked and I could finally get some sleep. I’m still not sleeping well because I have to stay on my back, no side sleeping as it’s painful and I can’t lie flat. Also, I think I’m subconsciously waking myself up whenever I need to move my leg as I can’t just fidget and roll around.
That first night was SO rough. I was still suffering horrid side effects from the injections. Around 22:30 I was on the loo and my body was spasming while freezing cold, but also sweating. I just wanted it to stop. With every injection I was mentally ticking them off like “right that’s one step closer to being done”, but it was so hard. Those injections may have saved my leg/life, but I was glad to see the back of them and switch to tablets.
Being at home was comforting, but those first few days were hard. I was stuck staring at four walls and could barely move from bed. Showering was easier than in hospital, but still a two person job. I was having all my meals in bed as I couldn’t get downstairs or even sit up for more than 3 minutes. I can now go downstairs and sit at the dining table for dinner which is another bit of progress!
MORE SCANS…
I’ll be monitored by the haematology unit regularly and I had to have a few more scans last week. They also measured my calves and even though the swelling has gone down, my left leg is still swollen. One of my tests was a CT with contrast. That was an experience!! The radiologist warned me that when they inject the iodine it may feel like I’ve wet myself. She was not wrong! It’s such a bizarre sensation, it hits your chest like a warm flash, then goes down and is warm. Somehow it also manages to feel like the liquid has come out when it hasn’t!
I was SO anxious about my CT scan, because what if I’m riddled with blood clots? Luckily it came back clear for anymore, just the ones we know about. I cried with relief after the Doctor rang me.
I already had scan of my heart booked due to another condition I have. This also turned out to be good in terms of the PCD as there’s a particular gene mutation that can make you more prone to clots, heart disease and stroke young. I’m currently trying to go about getting tested for that, but the echo should be able to tell us if my heart is enlarged or anything.
COMPLICATIONS
Last Friday, 24th September, I had some new symptoms. My pain changed slightly. I still had the original pain, but a new one came in. I also had hard lumps of swelling come up, on my thigh, which were warm to the touch. Then I had some pain near my kidneys and chest pain. I contacted my Doctor, who rang back within 20 minutes and wanted me to come straight to the surgery. She examined me and was concerned I had an infection in my blood clots. So, she rang the hospital and they said for me to go straight there.
I had another blood test, EKG, examination, urine test and a bladder scan. My bladder scan did show that I’m not fully emptying my bladder. There’s also some blood in my urine. However, luckily my bloods are heading in the right direction and don’t show signs of increased clot building or an infection. My CRP is down from 111 to 40-ish. My D-dimer is down to 0.25 from 4.25. This doesn’t mean the clots have magically disappeared, my pain levels would definitely tell you otherwise. But, it means that there aren’t any more blood clots building and that means the injections and tablets are doing their job, which is great news!
They were about to discharge me when the doctor came and told me that the consultant wasn’t happy with the swelling as it wasn’t “normal”. She came and examined me and thinks that it could be to do with the fact my blood is rerouting into smaller veins as the main veins out are blocked. Then, she said she thought about giving me another CT scan. But she didn’t think it would show anything more than perhaps the clots have moved a bit.
From an emergency stand point, there was nothing pressing. So she was happy to send me home and she was going to contact my haematology doctor, asking that he could see me in the next week or so to monitor me.
From how grim it was looking when I first went into hospital… With them talking of keeping me in for weeks, operating etc. I’m SO glad my body has responded well the initial treatment.
RECOVERY SO FAR…
As it was an unprovoked blood clot, I’ll most likely be on blood thinners for life. I’m told it could be 1-2 months for the clot to start dissolving/breaking up and 3-6 months for it to go completely. Then there’s the risk of complications afterwards. My recovery has not been fast or smooth so far.
I’m having to take baby steps and use everything as a mini goal. Standing up for 4 minutes instead of 3, standing for 1 minute of my shower, to 3, to 5, to the whole thing, walking to the car, walking into a restaurant. Everything that’s progress I’m counting as a step further in my recovery. I’ve had setbacks and flares of pain, but I’ve mostly been able to control it. Some moments have been very tough mentally. Overdoing it before meant working, cleaning, cooking, exercising. Now it’s standing up for 7 minutes.
My groin and thigh are still so sore, swollen and tender, but I’ve gone from being only able to hobble round the bedroom and en suite, to being able to walk round the upstairs of the house, to being able to go downstairs. For the first week home, I couldn’t do anything. My husband was cooking everyday, doing the cleaning, laundry, working, taking me to appts. It’s been very full on. I’m now able to cook, if it’s a quick meal and I have a chair in the kitchen, so I can rest.
I’m able to be up quite a bit more than I could, but I’m still very limited. The sofa is too low for me to get up without pain and pulling my groin, the downstairs loo is too low and causes pain. I still can’t lay down fully, but I’ve managed to get lower and lower, now I’m almost laying down, but still slightly reclined. When I was still only able to walk upstairs, I decided to try and go for a walk with my crutches. Only a very short walk, but it was too soon. After 5 minutes I was in a lot of pain and my leg had gone purple. We came home an I elevated my legs. It took about 6 minutes for my leg to return to colour.
Since then, I’ve spent the days slowly building up my walking around the house. Yesterday, we tried walking again and it was much better. I managed 9 minutes! My pain flared when we were so close to home, but I managed to settle it down by elevating my legs when we got back.
NEXT STEPS
I had physio yesterday and we came up with a plan of where I go from here. My physio knows I’m someone who needs goals, no matter how small. So, she’s given me some isometric holds, arm, neck an posture exercises. Nothing strenuous. On average, it takes 8 weeks before you can start to push a little bit. I’m only 3 weeks out from knowing I even have blood clots, so they are still there and I have to be careful. While the risk is low, if I start flinging my legs around, stretching, running etc, there’s a possibility the blood clots could move. They should have tethered to the vein, but it’s better to be safe than sorry. Plus there’s the pain element.
This is the first time I’ve 100% listened to the doctors and consultants and am listening to my body and pain. I absolutely cannot go back to where I was. That pain was horrific and I never want it again. Plus the risk that the blood clots are already quite high, so where do they go from there?
My physio said to maybe make a spreadsheet with what I can manage today exercise wise. Then with my walking etc. I do it until I can comfortably do it, then add 10%. So increasing very slowly. Walking is good for circulation and will hopefully help with some swelling, but it’s just not being able to be up for too long without a lot of pain.
SO, I think that’s about it. My goodness, what an ordeal. The pain, anxiety, stress has been overwhelming, but so has the support. You really find out who you should be keeping in your life when you’re really sick. Some have gone above and beyond. I couldn’t have done this without my husband and Osteopath. She filled in so many things that Doctors weren’t telling me and my husband has been my rock.
I really don’t know when I’ll be up on my feet properly again. I’m hoping in another week or two, I’ll be able to at least photograph some beauty stuff. As for baking, it might be a bit longer. Unless I get my husband to help me and I sit while doing it. But, I’ll be prioritising recovering to the fullest, so I’m not sure when I’ll be back fully.
The most important thing to take from this is; if you have unexplained calf pain. Like a cramping, sore feeling, only in one calf and not after any exercise, ring your doctor. Be persistent. It doesn’t matter how old your are or if you’re healthy and don’t have risk factors for blood clots. When you have a sore calf, it can be dealt with a lot more easily than when it gets to be big clumps of blood clots in and around your groin. Plus it’s much less painful!
