Severe pain

Hi peeps, hope today finds everyone ok,

I just wanting rack your brains for those of you suffer from pbc like I do. The past week has been hell, and ive had two close hospital admissions, first diagnosed with pancreatitis, yesterday, found myself in accute central abdo pain under my breasts. Pain so severe, I thought my time was up. I was given morpine and told it was my pbc, as my ALP level was raised more than normal, I had a urgent x ray which showed nothing. Discharged home as was told there was nothing they could do other than pain control, which they had given me. I am left feeling still very unwell but also frustrated as its made feel written off and left to battle whatever this is without any care, or compassion. Ive had pbc since 2013 and never experinced pain like this. It comes in waves of severe off the scale pain lasting anything between 4-8 minutes then subsides to more bearable pain. I have spent all day trying to research this, still with no answers. I have docs again today, but have no confidence in the fact I will be fobbed off again. I have a gastro consultant who sees me every 3 months, but surley I should be seeing a liver specialist. Has anyone experinced this sort of pain or experince. I feel so alone with this and worn out fighting to get answers. Sorry to be so negative, and thanks in advance for taking the time to read this. Any replies much appreciated thank you.

5 Replies

  • Sound like the same pain I had before I had my gall bladder removed.

  • Hi Fluffpuff64, not a doctor, not sure why they didn't have gastroenterologist give quick once over, & what's wrong with an ultrasound exam of the area? Even if you are on urso, still a chance you might have gallstone, pain does sound like biliary colic-- I had a sudden severe onset of painin the same area, could barely catch my breath, soon as I got to ER, pain stopped, like a tap turning off, my GI guy at the time told me I might have had 'duodenal spasm', but he did order more tests (HIDA scan, ultrasound RUQ) to rule out gallbladder problem. If you can, make them tell you why they say it is PBC. If you have pancreatitis, your GI dr should be involved & you can ask him about seeing liver dr. Eat super bland food if you are hungry while you wait to see these guys, & keep record of symptoms. & copies of tests they are doing. Good luck!

  • Hi as Belliver says sounds like gallstones. I had a scan in 2010, prior to my PBC diagnosis, and was told I had gallstones, however they didn't seem to be problematic at that time. 5 years on and they're now problomatic. I'm surprised they didn't check this out when you were in hospital. I'd ask for a second opinion and referred for a scan. I hope you feel better soon x

  • hihi... yes i have had the episodes that you describe... pat on the head and sent home with oxy... all you can do is let your innards rest... sip water and rest... stay away from fatty and spicey foods... maybe just broths... it will pass.. at least mine did... but who knows.... i research as well... i think i know more than my gp.... good luck.. i hear you...just keep being your own advocate and keep asking questions...

  • Thanks everyone for taking the time to reply much appreciated. I forgot to say I don't have a gallbladder it was removed ten years ago. I know you can still get stones though. I think your right I will ask for a second opinion. Thanks again

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