Do many people with PBC have pain in the area of the liver?

I have had an ache/pain in my upper right abdomen for months. I was having it checked out by my GP - but after normal ultrasound she said not to worry unless it gets worse. Since then I have been diagnosed with PBC, the ache persists, not bad, just there, but when I mentioned it to my gastroenterologist she said that hepatitis is not painful. What are other people's experiences?

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  • I have been getting pain in that area. It is not uncommon from what I have read here. I am having a scan as my consultant wants to check it is not gallstones. As it has been very sharp and severe he says thats why. If your scan is clear, it sounds ok,

  • It is quite common for PBC sufferers to suffer from an ache in the upper right abdomen; mine was really bad before URSO then it calmed down. Although it has flared up occassionally since. The drs look at the scan and if all ok dont worry. There are many components of PBC that are unexplained.......just as long as your bloods and scans are ok.

  • I also have had some pain come and go in the liver area. I have read it's not the liver that causes the pain but the sack that is around it. I had one Dr. agree with me, that this is the cause. And my liver is not supposed to be scarred as of yet. If it's bad, I would tell you Dr.

    Magnolia

  • HI Magnolia, no its not bad, just there and I had been having it looked into. But my GP doesn't know about the diagnosis of PBC yet as it turned up when I was seeing an endocrinologist. Hoping I am in early stages too, so yes was wondering why there would be an ache, and then my specialist said you don't get pain from your liver. I will have to read about the sack around the liver a bit more, as I don't think my dr's explanation of musculoskeletal is right, I have had it for way too long.

  • I had pain in my right hand side for many years and it was also diagnosed as muscular skeletal by the specialist that I am now seeing (around 2006 I think). He sent me for physio. It felt good because physio usually does but the pain never went away completely. It was never too bad though as well so I just ignored it. In retrospect though, I am pretty sure it was the PBC as my ALP was 165 back then, even though the bilirubin was only 7. Anyway.... Can only move forward now..... I should have been a bit more on the ball with it though, as he probably should have been as well. Liver problems do give you pain in your right hand side. Before I had my gallbladder out the pain in my right side was excruciating but it gradually lessened over the years but never totally disappeared. That was in 2003, or around about. So maybe the PBC was even there before. Who knows?

    Skippy

  • The only ache I got prior to being diagnosed with PBC in 2010 was a bit of shoulder ache in my right one.

    I think it is connected to PBC but it comes and goes. Feels worse when I have been lifting and carrying so I am not so sure at times but do think it is due to this. I don't have a major problem with it at present so just ignore it.

    I can't say I'm fortunate that I only have the itch of PBC but I'd abseil down a mountain if I could eradicate that!

  • Also have pain in upper right abdomen, which I believe it is due to the PBC. Although the liver itself does not give pain the sac round it can! Since being on Urso - diagnosed Jan 2010 - the pain has subsided but still there on occassions.

  • hi puddles.i was diagnosed in jan this year and pain in liver area was my only symptom until just recently.i had a scare tho over raised lymph nodes on pancreas in fact after they ruled out pancreatic cancer they decided it must be pbc that and only slightly elevated lfts.i still suffer from it but guess im getting used to it now.bizaarly it feels worse if im carrying something heavy.take care.

  • I went back to the doctor because I had been experiencing a dull ache in my upper right back area for several months and was frightened it was a sign my PBC was worsening.

    She sent me for a chest x-ray which came back clear (tho I'm not sure quite what a chest x-ray covers!) but she asked for an appointment for me with the liver specialist for his view. I ended up seeing his locum who said liver pain is normally felt in the front not in the back and given my latest LFTs, was unconcerned about my condition.

    A few weeks back I had another bout of cystitis - which seems to be happening more and more frequently nowadays and had to go back to the doctor for antibiotics. I mentioned the pain in my back and wondered if it could therefore be kidney-related and he poo-poo'd the idea, saying I'd be in a lot more pain if that we're the case.

    I'm a bit fed up cos no-one seems bothered by this ache but I can't help worrying that any pain that persists must mean something is wrong somewhere.

  • You would have to think from experiences mentioned here that PBC can cause some discomfort in the area of the liver - despite my dr's statement that hepatitis is not painful. On further reading the liver tissue itself apparently has no nerve endings but as mentioned here a couple of times the sac surrounding the liver can cause discomfort. So maybe it can become inflamed secondary to inflammation of the liver and give that uncomfortable feeling.

  • OMG, I' ve had that too! And my dr told me too that the liver doesn't hurt, so I thought I was just imagioning it! Also at the biopsy it hurted very bad... once he was throught it it was fine.

    This explains a lot! I'm so glad I found this forum...

  • I get pain over the liver area on my abdomen - it does vary and I have learnt if I am reasonable careful with alcohol and fats then it doesn't seem to occur but if i have e.g a fatty meal or several glass of wine then it occurs.

    Caffeine also gives marked pain and nausea but pain then is upper abdomen and central - the very worst time was when I took a cold remedy with caffeine - never again will i take any caffeine.

    One of the replies has also mentioned joint pain - which along with fatigue has been my issue and lead to going to the GP and being (over a year period) being diagnosis-ed with PBC

  • Hi Utilander, yes I had a sudden onset of joint pain too around 3 and a half years ago, no one has associated it with PBC officially yet, but since they didn't ever really get a proper diagnosis I am guessing it is all part of it! Just interested what your doctor's advice was regarding alcohol and caffeine consumption?

  • He had advised min alcohol. I haven't talk to him about caffeine but will be seeing him on wednesday for review of my medication so I'll let you know.