Yes, its me again :) Did any of you have right side pain that would go into your back before you were diagnosed?

The reason I'm asking is that as I sit here in my bedroom this morning, thinking of all sorts of things, I am concerned that these doctors that let me go for over 2 years, have now let me in for a later stage once diagnosed. I have had this pain before, but I haven't had until I went to the ER for my fibroid and was shot with intravenous pain meds, then told to take 800mg ibuprofens twice a day. I didn't know anything about possible PBC then. I am thinking maybe my liver is inflamed. Its better than it was, but it seems that if I eat something fatty or too sweet, I get terrible gas. I bloat up and then it pushes on that side and i am sore again. it gets better when I rest, when I wake up in the morning, I have the fullness there, but not the pain. but once I'm up and moving around, my lower back starts to hurt I get that full feeling across my stomach and it starts to hurt.

I have a hiatal hernia too, and acid reflux, which I normally take omeprazole for, but I have been trying to get off it.

I know you aren't doctors, but i was reading over on the american liver foundation's website, on the PBC board and all they talk about is the ones diagnosed in later stages having this pain because their livers were swollen and damaged. can you have an ache over there and the liver not be damaged yet? can it be swollen from inflammation like anything else and not have perm damage yet?

Sorry to pepper you all with so many questions, but I don't see my doctor till friday and I don't have my U/S until wed. thanks

21 Replies

  • Hiya! I often get pain in my right side, just under my ribs, that "refers" into my back. This can be linked to PBC, but the good news is it does not have to mean your liver is scrap, or on the way out :) I have annual ultrasound scans every March and my liver is smooth and in good condition showing no sign of further deterioration. Hope this helps. Remember : GLASS HALF FULL!!! :) :) x

  • Thanks Lou. i appreciate that. You folks just seem to be more positive over here, more glass half full :) I don't know if I stumbled onto a board that is negative or what. i could have been on the ESLD board too and not realized it. I was having a bout of feeling nervous and upset this morning. Had a dream about my dead mom and a dream my Dad decided to off himself to be with my mom and not deal with my issues or his. It put me in a bad place. My back pain is usually all over my lower back. I think its just that i don't move much these days and maybe my muscles are deteriorating. My husband, bless him, won't get upset until he hears the final word and even then unless they say i'm dying tomorrow he won't get upset. He is good like that. i need that in my life.

    I can't wait to dump all this news on my gynocologist on Monday. last she knew i was fit other than some gyno issues once a month. she is going to be so surprised. :) Thanks again

  • Awwww, I dream about my Mom, too. Then I'm heartbroken when I realise it was a dream (she left us in Sept 2011). Stress and upset can cause weird and unusual aches and pains in the body, bear that in mind too :) Hugs )))((( x

  • I was dx'd last Spring and haven't had pain until recently ---- typically after eating and often at night when sleeping on my side. It also occurs at times after low impact exercise such as walking on a treadmill and riding a stationary bike. My doctor mentioned most people don't have liver pain until later, as it can be a silent disease if asymptomatic (for me, AIH and PBC). I beg to differ after learning of so many stories from those who express pain, bloating and/or 'uncomfortable feelings' at any stage. That said, I explained that my pain was "worse on the right side and I just wanted to pry my ribs away from my body, readjust my 'pinching' skin and organs and neatly place everything back in there." After pressing on my ribs and various places along my side, chest and back, he chuckled and explained he believes it is costochondritis, a form of arthritis caused by cartilage and inflammation. He also said 'you've got too much meat packed in there' (166 lbs or almost 12 stone) and explained that losing weight may help. Oh, and like you, I also have a hiatal hernia and acid reflux, for which I also take omeprazole.

  • Thanks for your response. I have heard that too that it happens later. But to be honest ive had this pain before. Even years ago when i first had my liver us in 2011. It went away eventually after i controlled my eating to bland liquids for awhile. Back then i was convinced i had pancreatic cancer. But then it passed and i would only have now and then. I hope i get on urso soon and it isnt too late

  • Well I have more meat than you! I have recently gained 6 more lbs too. I'm sure that doesn't help. I know I need to lose some more weight.

  • I used to have liver pain/ aching ribs, but it has been a lot better since being on UrSO. My liver was definitely inflamed at the time but isn't now. My PBC is only in stage 1.

    It can come at at any stage of PBC.

  • Thanks so much :)

  • Hello NotorDJP.

    I've not actually experienced (as yet) this pain you mentioned. I did however have a shoulder ache the year prior to starting with the itch (2010 diagnosed PBC). It came and went and at first I thought it was due to my job as it was manual and lifting and carrying, etc. I am not so sure if it was due to PBC as it comes and goes and I have noticed more often than not if I've done some lifting or carrying groceries that day.

    Altho' it is said the liver has no nerves, there is an artery that runs by the liver and that is thought to be the cause of any aches there. My theory is due to slightly inflammation or inflammation perhaps. Patients having a liver biopsy often feel a sharp pain that hits their shoulder briefly when the needle takes the biopsy and it is said to be due to this artery. Always forget the name of it so once again had to Google it, should know the name of it due to it being called the Hepatic Artery due to the word hepatology (the liver area!).

    How are your bloods currently? I firmly believe that the bloods can tell a pretty accurate picture of how the PBC is and also an ultrasound scan too. I know I've mentioned on this site several times but I saw a prog on tv Oct 2010 and 2 men were having ultrasounds live on air as part of some subject of the liver and liver damage. The man in his 30s who was quite overweight, he was said to have a fatty liver and the scan was pointed out. The other man in his 40s was said to be an acoholic and it was shown he was in the stage of cirrhosis due to it.

    I think it is a fair comment to make that when we seek a doctor's advice when we suspect something is wrong (I went to mine itching in early 2010) we can have liver inflammation as it was said I had by the GGT blood test. But it is also known that liver inflammation can be resolved as the liver can repair itself. Certainly not when we reach the cirrhosis stage but long before and also taking urso with improved blood work it has to be said that we are doing pretty great at the time. (My ultrasound showed me to have a pretty normal looking liver and surrounding organs just prior to diagnose. My bloods are drastically improved to how they were back in 2010.)

  • Thanks for your reply. My ggt and alp are both high. My ast and alt only slightly elevated. Albumin and bilirubin are normal. I know the last two are usually indicitive of damage progressing. So at least those are normal. I am ama positive but i dont know jow strong a titre it is. I think inflammation is pretty common in this disease. My mom would have times when hers was. I do know that i may have inflamed with nsaids use too

  • Hello once again NotorDJP.

    Yes apparently a normal bilirubin level (I have so far had normal results) is a good thing with PBC.

    I have no idea with regards to how high a titre the AMA was on mine when I was diagnosed as the consultant only wrote on the letter to the GP, "a high titre of AMAs which is indicative of PBC". There are no figures as in a range to see and I've not bothered, nor do I want to know. The thing with the AMAs is that even tho' I tested positive for them, if I was to have a recheck now they could vary or even be negative as that can occur.

    Usually NSAIDs or steroids are anti-inflammatory so I can't see how this could contribute to an inflamed liver. Think I am right (though someone else will have to respond here) but some with AIH can be presribed steroids apparently.

    Figures really to me that the liver can be inflamed due to bile not being able to travel down certain bile ducts that are suffering from damage due to PBC.

  • I have read replies to your query. I had Gall stones and the pain is on the right and goes through to the back. It becomes unbearable. Mine ended in a major op because I tolerated it for far too long my gall bladder burst. Perhaps get your Gp or specialist to rule out or confirm gall stones.

  • Gall stones cause pain at the front right side and radiates through to the back. It becomes unbearable so maybe have a Gp or consultant to rule this out .

  • For some reason my replies are not being successful. This is third time lucky I hope.

    You sound like me when I had Gall stones. The pain -both front and back- is typical as is it worsening when eating fatty food. I let mine go on too long and became dangerously ill . I was too stoical and too busy to react in the beginning. It resulted in a major op and fifteen stitches. Do check it out if you think it could be. At least if you do have Gall stones you can have keyhole surgery.

  • Usually gallstones can be seen on an ultrasound. My late mother back in 1987 went to see a GP with pain round her breastbone area and she noticed after eating.

    She was sent for a scan and at the time told to eat a couple pieces of chocolate which she was dreading as she said she knew she'd get pain following. She was informed she had gallstones. I cannot describe the pain she had due to the fact that I've not got any problem.

    I know the hospital consultant said he could see clearly on my scan that my bile ducts looked perfectly fine just prior to diagnose. Some you cannot see clearly at times with a scan (ultrasound that is). I don't know how one would experience a bile duct blockage so cannot comment there.

  • The pain becomes totally unbearable. I turned orange around my face. Believe me it is excruciating at a late stage. And very dangerous . I went on an antibiotic drip and a morphine drip for a few days, then sent home on antibiotics for a week before they dared operate. Nasty!

  • My gall bladder was removed years ago

  • Oh right. All replies got there in the end. Sorry!!

  • No problem! My gall bladder was removed in 2004. I didn't have stones, it just stopped working. They had to do a HIDA scan to see it wasn't working. When the doctor took it out he said I was full of sand. I wonder if any of that could have lodged in the liver and irritated over the years? I guess I would have been sicker sooner if there would have been issues with that. When I had my gall bladder I had this same pain, so it is very similar. I have lots of referred pain though. I'm the queen of referred pain!

  • Hi: Yes, My primary symptom was pain. That is what lead to my early diagnosis. When every my LFTs are elevated I get pain. Some of us are just more sensitive than others. some times it made me double over. I work with Drs and they were not aware that this was possible. My pain went on for 5 years before they figured it out. I am of the 15% who do not test AMA positive so I was very fortunate to have had that pain. I am still in the early or stage one category. after being on Uso for 3 years, the pain and LFTs are normal. hope this helps.

  • I have always been sensitive to things, and my doctors say I can't be having that much pain. For instance, I had tiny ovarian cysts that were causing me pain. They said no way, but they were. Same with my fibroid. I would bet the fibroid is causing my bloating, not the liver. Yes that helps alot!

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