I read every post on here but don't write too often. I like soaking up info and stories to try to help me understand liver diseases. I wanted to share whats been going on with me. I had RUQ pain on and off for over a year and it was intensifying this past February so I went to the doctor. I was 5'10" and 190lbs, I am 34.
They suspected that gallbladder issues. After Ultrasound, HIDA Scan, CT Scan that all showed nothing wrong with my gallbladder they told me that I had a fatty liver. I had an endoscopy done which also showed nothing. I then had a Fibroscan done. The results were scary to me. NASH, 12kPa, CAP 294, F 3-4, S>3. Went to a basic hepatology appointment where I had a lot of blood work done trying to find the source of my liver issues. All blood work came back negative so they ordered a liver biopsy. At this point I tightened down on my diet and began excising more.
The biopsy was done in April and confirmed that I have NASH but not as severe as Fibroscan suspected. Results showed NASH with minimally active Steatohepatitis and Nodular Regenerative Hyperplasia. The results were not explained to me very well at all, just a list of medical jargon. I was happy to find out the NASH wasnt as bad as suspected but I was continually feeling worse RUQ pain and fatigue. I was also very confused why the Fibroscan and Biopsy showed such different results.
Finally at the end of October I had my first real Hepatology appointment with a real Doctor. I am now 145lbs, I didnt realized I had 45lbs to lose. He explained that the NASH is being managed well with my diet and exercise from what he can see but that the Nodular Regenerative Hyperplasia was a concern. He explained to me that the Fibroscan results were accurate, that we had thought there was just NASH going on but the biopsy showed us that the NRH was there too, also causing liver stiffness. When I asked about my pain I was told that he doesnt believe that my liver is the cause of the pain, that he believes there is more going on because I experience this constant pain, my stool is light(ish) and typically not firm, and that I lost 45 lbs without intentionally doing so. Just eating very well and exercising. The pain is very much in the location of my liver, if I drew on my body where I feel it, it is exactly where my liver is, across my front, RUQ, right side, and right back. He ordered an MRI and Endoscopy and Colonoscopy.
I am having them all done next week. I am looking forward to the tests in hope of discovering something that could be the cause of all of this, I am otherwise a very healthy person. But I am also terrified that I am going to find out bad news. The amount of pain that I experience feels like there is no way that I am healthy but all my tests (outside of biopsy) say that I am healthy. I dont have a point to posting this other than to share my story. I have NASH and Nodular Regenerative Hyperplasia. I try to not think about them because there isnt anything I can do other than to live the most healthy and positive life I can. I am doing my best but it is scary wondering what the heck is going on inside of my body. For now I mostly only deal with pain and fatigue.
I am always trying to learn as much as possible about both NASH and NRH. Anyone else out there have NRH? Not much info to be found about it on here, I have read everything.
Keep your head up out there. Live your best, healthiest life. I will post if/when I get results from my upcoming tests.
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It always amazes me when docs say the liver doesn't cause pain. Technically true as there are no nerves in the liver but it is enclosed in a tough cover called the Capsule of Glissson that does have plenty of nerves so when it is distorted by liver disease RUQ pain is a common result. That doesn't mean it isn't something else but here is a link if you would like more detailed information. Just do a page search for Glisson.
Great Post. I learned a lot from your post. I do not have answers for you but sounds like your moving the needle in the right direction. I don’t know the pain your in but I hope you’re feeling better with the weight loss. I didn’t think 5’10” 190 was that overweight. Great Job on the weight reduction.
I had my MRI, Endoscopy and Colonoscopy done last week. Results from MRI showed that my liver is normal sized and that I have eliminated all fat (hepatic steatosis) from my liver which is great news! Being disciplined with my diet and eliminating almost all processed foods from my diet seemed to do the trick. The MRI also showed that I have sludge in my gallbladder. I am wondering now if the sludge in my gallbladder is the cause of all my pain. My endoscopy showed that I do not have varices which is also great. Still waiting for biopsies from endoscopy and colonoscopy to come back.
So good news about getting rid of all of my fat in my liver but still confusing as to why I experience so much pain in my RUQ. I don't understand NRH very much and I cant seem to find anyone that does. My next step is that I am going to see if I should be getting my gallbladder removed. I would be very happy if I discovered that removing my gallbladder would eliminate the pain I am in. I will continue to post on here any updates.
Wonderful thread. I am also in my journey in finding out the pain I'm having. It's frustrating. But your journey to healthy lifestyle is very inspiring. I'm following your story.
I had my appointment with general surgeon this morning. I am having my gallbladder removed on the 17th of this month. We are hoping that this will eliminate my pain. We will see!
It relieved the sharp pains I was having but I still experience a weird “pain/burning” sensation across my RUQ and right side some times. Docs kept saying that my gallbladder looked ok but then once it was removed they said it was in rough shape. My next hepatology appointment is in September. I am looking forward to possibly getting another fibroscan to see how my liver is doing.
I also have NRH, what is a fibroscan? How does it differ from a liver ultrasound? Sorry for all of the questions but this is still relatively new to me. I am over the anger and shock now so I just a a lot of questions. I thought I had been put through every test in the medical books but I have never heard of a fibroscan.
Fibroscan is a test that can tell you the stiffness of your liver, how much scarring or fibrosis there is. It is a simple process that only takes a few minutes but from my understanding it cannot recognize NRH. My Fibroscan results are what led to me needing to get a biopsy. The biopsy showed NRH. Have you had a biopsy done? How did you discover your NRH? Feel free to private message me if you'd prefer.
I am facing the same pain as you are.. Fatty liver was diagnosed and I started eating healthy and working out and the pain went away. I am hoping that its not Fibrosis. Hope you are feeling better now. If you dont mind can you please let me know how it went for you?
Hi I have very similar issues to you so far minus the actual diagnosis. Getting biopsy in two weeks. Enlarged liver and portal vein but nothing else. Very awful URQ pain and gallbladder sludge as well. Terrified by the enlarged portal vein reported on my MRI last month but no dr will talk to me before my biopsy. I did have a dr suggest gallbladder removal as well and wanted to know if that helped you at all?
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