Newly diagnosed and concerned about pain

Hi Everyone,

I am newly diagnosed with PBC (diagnosed December 2015)

I've started Urso treatment, and my blood tests show that I'm responding well to it. My LET'S are slowly getting better. 

However, last month I had awful pain over the liver area and nausea lasting 3 days. I assumed it was down to one glass of alcohol I had at a friends party.

However, the pain has now come back, v sharp. I feel nauseaous and so exhausted

 Scan today couldn't shed any light on why? Could anyone out there give any advice? 

Thank you!

12 Replies

  • I'm new myself so no advice.

    Just wanted to say that I hope you get relief soon.

    Someone on here may have had the same problem and I'm sure they will tell their experiences.

    Have you tried taking to the PBC foundation. Perhaps they can give you advice or reassurance

    Best wishes

  • I do notice that if I take take like 2 or 3 doses of Tylenol this happens, but always check with a Liver specialist again if you need to.....and I do also have a Fatty Liver..... everyone is different .....Dr as you know is always best to consult regarding this....all the best.

  • Hope you feeling a bit better. I don't know what kind of scan you had, but not every imaging modality will shed light on every problem in the area, maybe a different type of scan is indicated? A few years ago, I was in the waiting room for an ultrasound ( NPO) when I suddenly developed incredible, breathtaking pain in the RUQ- the pain lasted for about 30 long minutes (was on the point of asking for transport to an ER dept) when pain disappeared. I told the U/S tech what had just happened, she spent extra time in the gallbladder area, wrote my symptoms/experience for the radiologist to consider,  I called the nurse of my specialist (at that time a gastroenterologist). Got in to see him very quickly, he told me I might have had biliary colic, maybe passed a stone, maybe some sort of duodenal spasm. He did order a nuclear medicine test for gallbladder function. Never had this pain /symptom again, never found out exactly what was the problem. Whenever I have various pains , I try to ask if this is 'normal' for my particular set of health issues, what do I need to do if it gets worse, sometimes I ask the doctor what diagnosis would be considered in someone who doesn't have my health makeup. Don't be shy about calling the doctor , maybe a trip to ER if indicated, second opinion from another of your doctors?  Pain / nausea like you describe needs to be investigated , does your blood test reveal anything? Maybe you've developed a new food intolerance ( some my favorite foods are just a memory now) Let us know what happens!

  • Thank you for your reply, it's helpful to hear what you have been through although I'm sorry to hear of the pain you were in, I can only imagine! 

    It's frustrating to be in pain but not know why, and with the very new diagnosis of PBC I'm still in the shock and worry phase at the moment! 

    I do everything I can to stay healthy despite the awful fatigue. Eating healthy, going to the gym, walking etc and this pain really bothers me now! It's been over a week and no let up!

    Here's hoping you stay well.Thank you once again.


  • My Liver specialist said there was no way I could be in pain...bc Liver has no nerves.  I strong disagee, then it must be the gallbladder,  but it is definitely in the Liver!!!   I don't know how Dr.s can say this to me I feel the pain sometimes!!!!   Best of good health to you...

  • I have seen this many times before.  It is true that the liver has no nerves to cause pain, BUT the capsule surrounding the liver does, and when the liver enlarges it causes a lot of pain.  Doctors know this - don't know why they keep insisting to patients that they have no liver pain.

  • Hi there. Thank you for replying to me. I was in hospital with this pain last weekend. The Dr's said the pain is Def coming from the liver, and it's a pbc flare up while another Dr says that Pbc causes no pain at all and no flare ups? Ultrasound scan didn't really show anything, lfts are infact better than the last test a couple of months ago but pain and nausea continue?! Very odd!

    Wishing you good health,


  • Hi Hibbsy

    I too have recently been diagnosed with PBC and I do suffer from a dull pain that comes and goes, around my liver area.  When I mentioned it to my Consultant he said that pain or discomfort in the upper right corner of the tummy can be a symptom of this liver disease.

    I find for me that if I'm slouched over it becomes more painful so I try to correct my posture and find that it helps.  I put this dull pain/discomfort down to having an enlarged liver (diagnosed by the consultant).

    Don't know if this is any help to you as your pain is very sharp and you have nausea but just thought I'd share it with you. Definitely mention it to your GP or Consultant and worth asking of your liver is enlaged.

    Hope you get some answers and feel better soon.


  • Thank you for your reply. It's nice to know I'm not alone with this. Yes I'm going to see if I can get in touch with my Consultant and try and she'd some light on it.

    Here's wishing you well,


  • I have had this issue of pain on the right said as well. The other night I woke up from a dead sleep with an excruciating pain - started tearing up wondering if I should wake the hubby. After about 5 minutes of walking around it seemed to slow down and then stopped. I thought maybe it was gas but the pain started right under the breast at the top of the liver - one point of the biopsy so it was the liver. Freaked me out. 

    I have no idea what causes it - have not called the doctor because I am relying on my recent numbers which say the liver numbers are normal - thanks to Urso. 

    So now I write everything down on my iPhone so I can ask the questions at the liver center when I go in July.

    If the pain had not stopped - I would have gone to the hospital. I don't want to take chances with something like this when I do not fully understand all that can happen.

    Also, I am reluctant at times to say anything. I have only told my family because when someone said to me once - at least it is not cancer - I felt like a baby even mentioning it. I come here instead so I can talk to other people who experience the same thing.

    It has been so very helpful. Thanks all,

    Best, J

  • I don't think it will be from the alcohol, one glass of wine won't hurt you, in fact 3 glasses of wine won't!!  It sounds to me like it could possibly be from your gall bladder?  Most of us have a gallstone we don't know about... But I'm not a doctor....

  • Thank you! Ultrasound scan was clear but the Dr has given me antibiotics today just to be sure it isn't an infection of the gallbladder?  I'm really hoping it wasn't the alcohol as I really did have only the one glass and it would be a very sad existence if I couldn't have just the one now and again...I haven't dared drink since then as I was worried! 

    Best wishes



You may also like...