Rare Liver Diagnosis Following Biopsy - Continue Pain

[M8118]

First post here (after reading for a long time)

After five years of elevated LFTs (always AST and usually ALT), ultrasounds and MRIs (with normal results), I finally had a biopsy two weeks ago, because as an athletic, mid-30's, non-drinker, non-smoker, non-diabetic, non-celiac, non-hyperthyroid... my doctor was totally stumped by my continued poor labs.

I've had GI pain on and off for years as well as occasional periods of bad itchy skin, metallic mouth taste and fatigue (yet EXTREMELY poor night sleep with constant waking). I was also recently 'diagnosed' with rosacea (some suggestion of larger auto-immune issue I suppose), and have been dealing with pretty uncomfortable flushing / burning face and eye inflammation for the last year.

Long story short, I received a very rare diagnosis of Obliterative Portal Venopathy (OBV) with mild Nodular Regenerative Hyperplasia. My doctor has never seen it before and we've been working with colleagues to determine next steps. There's extremely little research out there. No one can suggest a treatment. But you more or less are at risk of the end-stage liver failure outcomes (portal vein hypertension... varices... etc), even though there's no cirrhosis of the liver. With my biopsy, supposedly there is even no sign of any fatty liver composition, and just mild inflammation (likely producing the poor LFTs -- all other liver levels like Alb and Bili are normal). But no one can provide a prognosis. It's mainly a future of keeping and eye on complications.

But since the biopsy, my stomach pain has become much worse. I feel sick after every meal - nauseous and swollen. The fatigue is extreme too. And I have had pretty constant pain, even two weeks later, at the biopsy site (although the stomach pain after eating is both right and left in the upper abdomen). All this said, I'm 100% conscious of the fact that stress/anxiety around the liver issue could be at least contributing to the symptoms. But the pain is real. I've also been trying to gain weight, so I've (literally) been forcing myself to consume more calories for the last couple of months (although never eating large meals... doing many many small meals of good quality food throughout the day), so the whole system has had more to do lately (and yet the weight gains have been... slow).

Part of the follow-up at this stage was a full abdominal ultrasound last week to confirm there are no clots in the portal veins - a necessary item to rule out. I'm hopeful the results will provide some clarity and call out any issues that could be causing the pain, or any issues from the biopsy.

But has anyone had similar experiences? This rare diagnosis? Prolonged discomfort after a biopsy?

[Hidden]

Hi M, & minor bleeding can occur with biopsy and any blood in the paritoneal (abdominal) cavity can produce abdominal pain.

If this is what's going on, it should be absorbed/resolved within 30 days.

Hope you're feeling better soon.

[M8118 in reply to Hidden]

Hoping it does resolve! I hate reading everything that says there should be no pain after a week and thinking "Well, that would be nice". It has been hard to isolate the source of the pain, but I'm 'encouraged' when it seems like it's mostly just pain radiating from the puncture site and surrounding tissue. Sort of like a tooth ache that makes your whole mouth sore.

[Beedee87]

I've replied to the other post, but just wanted to add a couple of things. I would echo what Metanoia says below in that pain after biopsy is pretty common for at least a couple of weeks - I got the same thing. My doc also said that the needle can cause minor damage to the diaphragm and this can make the pain much worse, given that the needle is going through a massive muscle. So it could actually be your muscle rather than problems with your liver that is causing the pain. Secondly, I know it is frustrating to not be able to gain weight (I also lost a lot of weight when I was first unwell) BUT at least it is a good sign that you're not getting bad ascites.

[M8118 in reply to Beedee87]

Fingers crossed it’s muscular. Based on how it radiates, I think that is likely.

[Hidden]

Are you based in the UK? I have experienced varices etc without cirrhosis, so have some experience of this, but not sure what or how much you want to know? Get back to me if you want to know more detail, Id be happy to help if I can.

All the very best