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Hi Louise - an interesting question indeed- and thanks for sharing your experiences
I’m no medical expert but I do know that it’s taken 10-12 years or more to get sepsis recognised as a factor in many illnesses. It was never widely recorded all those years ago and only now, the public and healthcare professions better understand the importance of sepsis in diagnosis and treatment.
You may need a medical opinion based on symptoms you’ve described, to asses whether it “could have been” sepsis. If that is important to you perhaps give the UK Sepsis Trust a call and see if they can guide you on what steps to take next.
As to why it wasn’t picked up, I’d say the medical profession has moved on a lot in the last 10 years re diagnosis and treatment - largely thanks to the UKST. There must have been tens of thousands over the decades that may have suffered and died of sepsis - whilst records will only show the primary cause - not the final cause.
Oh - and more importantly - Great to hear you have had a second child and all went well!!
First of all this may seem a bizarre post. It has only recently struck me that I think I may have had sepsis almost 10 years ago but was never suspected or diagnosed of having it as far as I am aware.
This occurred 3 days after I had my first child via emergency cesarean section after being in labour with prolonged rupture of membranes for 37 hours.
My first symptom was intense shivering and feeling generally unwell. My temperature was raised and very quickly my respiratory rate began to rise. My heart rate was raised also but at the time was put down to the fact that I was anaemic with a HB of 7.6. My BP was raised, (not low) thought to be due to postnatal hypertension.
Blood cultures came back normal but my CRP was raised, this was put down to the fact I had recently had surgery. Lactate levels were not assessed to my knowledge.
My NEWS scores were 5/6, with ITU outreach nurses visiting every hour or so in the first couple of days. Initially a source of infection couldn't be found, and as I had reported an allergy to cefuroxime and cephalexin the microbiologist on call was contacted for further advice. I was then commenced on 3 different IV antibiotics, perhaps he knew something was seriously wrong then but I was never made aware of any details.
I eventually was discharged from hospital 2 weeks after having given birth. A few days later I received documents from the hospital that I had had an intrauterine infection.
I can say I have never been as unwell as I was during this time, I felt like I had been hit by a tank. I did not feel like myself again for at least 12 months after.
The lethargy I felt in the first 4 months was immense, which I didnt get over for a long time. I would wake up as exhausted after a 10-12 hour sleep, as what I had the night before.
I had began breastfeeding but on day 3 my baby was bottle fed from then on as I felt so unwell. This gave me the opportunity to sleep as I had good support from family who helped to look after my baby. All I seemed able to do was sleep which I felt so guilty about. I just put the lethargy down to having a new baby and it was what every new mum must have felt like, but I felt like the lethargy was the worst thing of all what I had experienced. I have had another child since and never experienced this with my second after her birth being very straightforward with no problems.
Does anyone have any advice or words of wisdom as to whether my suspicions that I had sepsis ring true? And if so why was it never picked up?
Hello, I wonder if anyone knows exactly what is going on in your body to cause the usual symptoms of PSS which I have, I have googled this many times and assumed from the information that it is the immune system that has to rebuild, I may be incorrect with that but if correct, no idea how that happens. Does anyone have anything to add to understand what the body is going through whilst recovering down the line. It does seem to affect all the body and new symptoms arise all the time and I sit here wondering what process the body is going through, ie is it the blood etc. Any information would be helpful.
Hi Amandaa - thanks for sharing your story and hope you have found some useful information here on the Forum.
It's a slow recovery process for sure and symptoms can differ. If you haven't already, do talk through with your GP and explore non medicated options if that is your preference. Also, speak with a member of the support team at the UK Sepsis Trust - they are all trained nurses with experience in critical care, sepsis and sepsis recovery. give them a call on their freephone number 08088 000 029 Monday to Friday 9 – 4 pm
Take care and keep in touch
My sepsis story began in January 2018 and ended May 2018 (3 hospital admissions). Fortunately I survived with all limbs intact. However, I have been suffering from every symptom of PSS since. Looking at the whole picture, I am getting better albeit slowly. However, the pains in my hips, back and legs can make it very difficult and painful to sleep in bed. This is relatively new (3-4 months). When I get into bed, I find it too painful to turn over or move at all, its painful on both sides and on my back, so painful I have to struggle to get out of bed which hurts more and end up sleeping on a recliner chair which seems the best, most comfortable alternative. However, I really don't want to sleep on the recliner forever! I have tried leg pillows and all positions and different mattresses including memory foam etc. I also suffer when I have been in a car over 2 hours, the same symptoms, I can hardly get out of the car as the pain is that bad. When the pain is really severe, it isn't very often that over the counter painkillers work and when they do I take the max and could take more. I didn't want to go down the route of getting prescription painkillers.
I would greatly appreciated any advice anyone could give, things they have tried etc and also advice on whether anyone thinks the doc's prescription painkillers would be best.
I would love to go to a support group but unfortunately there are none in my area as yet.
Thank you everyone in advance and I look forward to receiving any replies.
I have just found this forum and will be eagerly reading everyone else's problems to see if I can shed some light on any advice :)