I am a 66 year old female diagnosed with PBC in 2014. I had a liver biopsy 3 days ago (my 3rd). I was sedated for the procedure itself and did not experience pain, however as I came to in the recovery room I experienced extremely severe pain for well over 20 minutes before recovery room staff finally started to treat my pain.
I was crying out loudly and writhing on the hospital bed. My blood pressure rose to dangerous levels and I couldn’t breathe. Some big guy came in and physically pinned me to the bed while the nurse shouted at me to breathe. I was incapable of doing so with my chest and abdomen spasming from the overwhelming pain. The surgeon that performed the procedure finally authorized fentanyl. By then my pain was off the charts and they had to dose me a second time before the pain backed down.
The staff claimed they’d never had a liver biopsy patient in so much pain before. Neither could they tell my why I had so much pain or why it took so long for them to treat it. Three days after the procedure my pain is sometimes quite sharp and doesn’t seem to be related to any movement or activity. It just stabs me out of the blue. Other times it a deep heavy ache in my side that radiates up my shoulder and across my abdomen. I was told to take Tylenol which has not provided even an hour of pain relief. It’s worse than nothing.
I have a new medical team that wants me to have a liver biopsy annually. After this last experience I am strongly inclined to decline.
I am wondering if anyone else has had severe pain from a liver biopsy, were you able to get relief, what was it, did your medical team tell you why you were in so much pain and would you submit to another.
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bei15354
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I have never heard of anyone having a biopsy annually as part of a PBC care package. In fact in 22 years since diagnosis I haven't had one. Does anyone else think this is very unusual?
Yes I agree with you. My hepatologist prefers NOT to biopsy. He ordered one on me 3 years ago only because my alt or ast (don’t remember which), was elevated. He needed to rule out aih.
I’m sorry you had so much pain. My biopsy was pain free even afterwards. I had no pain medication. I think anyone here would agree an annual biopsy is not the norm. Hope you feel better. Might consider a second opinion.
I agree with Oidra and gwillistexas; biopsies are used very sparingly to diagnose and stage if needed. I had one biopsy under full anesthesia to diagnose the pbc. When I woke up, I was in the recovery room and starving.
Should seek another opinion on why annual biopsies are warranted.
I had severe pain when I stood up and they immediately took me back in to make sure that I was bleeding internally (one of the risks). CT scan indicated no bleeding, so they turned out the lights and observed me for 2 hrs. No pain medication. Deep breathing. Went home with no pain meds.
Not sure why you would need a second biopsy. Unless your condition is complicated with some other degenerative illness. I understood that the biopsy was to confirm the diagnosis of PBC.
I agree with others here. I would seek further advice on why this is considered necessary for you. I have been diagnosed with PBC without a biopsy, and scans were used to determine damage, which fortunately for me was not too high at this stage. I don't have other complications at the moment. I was diagnosed 4 years go or so. I hope the pain goes away for you and you find further answers.
I had one 16 years ago to diagnose PBC as from bloods gastroenterologist knew I had AIH. Immediately afterwards I had extreme pain in my shoulder and they gave me painkillers. 1 dose only. They said you can get pain in your shoulder/back but only some people experience it. Agree with others. Biopsy by the very nature of it being invasive are for diagnosing. Hope you improve quickly.
l agree with the other comments, l don’t know why anybody would need yearly biopsies l had one initially which diagnosed PBC but have never had one since l have 6 monthly blood tests and recently a fibroscan and dexa scan. My shoulder pain after biopsy lasted at least 2 days but l managed it with the odd paracetamol.
I am so sorry to hear you experienced that. My first liver biopsy was 2002, and it was to diagnose what then was AIH (Autoimmune Hepatitis) with some suspicion of PBC overlap but later dismissed as only AIH. I have only had a few (maybe 3?) since but the last was 2+ years ago to confirm what was suspected on MRCP that now I do have AIH/PBC overlap. My very first biopsy in 2002 they evidently didn’t give enough sedation (back then they did conscious sedation like colonoscopy and you’re asleep but can follow directions though most recent biopsy I was relaxed but awake and they locally sedated and I didn’t feel a thing) and during the procedure they hit something and I remember waking up with probably yelling and I moved, I remember them saying something about giving me more sedation then I was out again. It wasn’t what you experienced but I couldn’t sleep on my right side (or even roll onto it) without pain for several years. It was a sharp, deep pain and on 1-10 scale I would rate it a 12 . I am at a good transplant center and have done lots of research and have multiple autoimmune diseases so I feel confident to tell you that PBC once diagnosed is nowadays followed through liver fibrosis scan (ultrasound shows stiffness/progression) liver fibrosis panel (labs) and possibly will only biopsy again if ready for transplant to confirm cirrhosis- but maybe not then. I know many people travel out of state to be followed by liver transplant centers and unfortunately you may need to get at least a second opinion elsewhere. I don’t know where you are of course but I would seek a new center as soon as you are well enough. Even far off places, once they see you, can sometimes work with local doctors for necessary tests but if local hospitals don’t have advanced testing equipment they won’t be up on the latest. I am thankful to see how much medical advances have changed and now can provide less invasive testing. I am willing to answer any questions but hang in there!!! You will be ok- this is a journey for most that is treatable and even very sick people can avoid transplant indefinitely. There is hope- just find the best medical care that you can. Blessings!
I had a liver biopsy in 2016 and had horrendous pain after; also had blood pressure spike. I did finally get some pain meds and didn’t have any pain after that. I’ve not had to get another one since then (and will truly fight getting another one)
I have gone against my doctor’s wishes and refused a liver biopsy. We just look at liver ultrasounds and blood enzymes. It might be a mistake - hope there’s not something really bad going on that would only show up in a biopsy! Sorry for your trouble! Hope you feel better soon. Could you at least stretch out the time a little more between biopsies?
I’m feeling quite a bit better today. Still have to pace myself. I tire with only a little exertion. Pain only if I bend or twist wrong, cough or sneeze, and then it’s a sharp stab that quickly fades to a mild ache.
Considering all the helpful comments I’ve received - thanks to y’all - I believe the extreme pain I experienced may have been the due to blood pooling from where the biopsy core was drawn, putting pressure on tissues and nerves.
Perhaps thinking the pain would last only a minute or so, the recovery room staff failed to treat it. 20 minutes after observed, With pain at unbearable levels, the staff tried Tylenol which was totally ineffective. They were behind the pain curve and could do nothing more effective until the surgeon who performed the biopsy arrived and authorized fentanyl, maybe 40 minutes after pain was first observed. They had to dose me 3 times before my pain abated.
A heating pad on my side below the incision provides some relief since acetaminophen does nothing. I’ve had a couple nights decent sleep. So I’d say I’m recovering as expected. However, I will be contacting my care team Monday to lodge a complaint and inform them I will not submit to another liver biopsy. No patient should have to endure the pain I did for a diagnostic procedure. I think the medical industry, particularly doctors, need to be reminded of the oath - First, do no harm.
oh my goodness! I’ve never had a biopsy - just fibroscans and ultrasounds. After what you’ve been through I’m never having one - I would suggest you don’t either!! Take care x
I think that my biology is just different enough that it doesn’t respond as expected to the typical protocols. The more I’ve read and compared comments from others on the PBC forums the more I know without a doubt that one size does NOT fit all and that the average medical professional is not prepared to recognize an atypical response and jump into action when a situation goes off the rails. This is why it’s important for me to lodge a complaint so protocols can be adjusted and personnel be trained to anticipate a situation like mine so it doesn’t happen to anyone again.
All that being said, I won’t submit to another liver biopsy, particularly as there are less invasive procedures that provide adequate information to make a diagnosis.
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. I am at a good transplant center and have done lots of research and have multiple autoimmune diseases so I feel confident to tell you that PBC once diagnosed is nowadays followed through liver fibrosis scan (ultrasound shows stiffness/progression) liver fibrosis panel (labs) and possibly will only biopsy again if ready for transplant to confirm cirrhosis- but maybe not then. I know many people travel out of state to be followed by liver transplant centers and unfortunately you may need to get at least a second opinion elsewhere. I don’t know where you are of course but I would seek a new center as soon as you are well enough. Even far off places, once they see you, can sometimes work with local doctors for necessary tests but if local hospitals don’t have advanced testing equipment they won’t be up on the latest. I am thankful to see how much medical advances have changed and now can provide less invasive testing. I am willing to answer any questions but hang in there!!! You will be ok- this is a journey for most that is treatable and even very sick people can avoid transplant indefinitely. There is hope- just find the best medical care that you can. Blessings! 
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