Advice for veno-occlusive/sinosoidal obstruction disease

[Beedee87]

Hi everyone, I’m new here. I’m 30 years old and I started having right upper abdomen pain about 18 months ago. To cut a very long story short I have now had a tentative diagnosis of VOD/SOD following many scans and liver biopsy. I am in pain every day but my LFTs are all normal and I don’t have ascites (yet? Touch wood). I keep being told that my condition is very rare as there is no obvious cause for my illness. I haven’t had bone marrow transplant or drunk any strange herbal teas which are the two main causes! It is apparently chronic VOD and not Budd Chiari although at this point the docs are so confused that it’s anyones guess. They are not planning on doing anything and just monitoring me. I feel like my whole life is now uncertain, me and my husband wanted to start a family but I don’t know if it’s safe. I have been given no guidelines and no advice. I feel completely lost and I can’t find anyone else with this diagnosis. I also have coeliac disease and family history of haematchromatosis but this is apparently unrelated. Any help or advice would be much appreciated! Thank you.

[M8118]

Sounds like we are in similiar situation!

I was diagnosed with Oblitertive Portal Venopathy two weeks ago following a biopsy (and five years of mysterious LFTs). I’ve been told it’s totally idiopathic. I don’t drink, smoke or eat fatty foods. No toxins, medications or supplements. No diagnosed autoimmune issue. No diabetes. The only follow up they could recommend were blood tests for blood clot issues and another abdominal ultrasound. But even then they’ve made it clear there will likely be little treatment options aside from crossing fingers against portal hypertension, ascites and varices. Not encouraging, particularly as I’ve been having bad abdomen pain for weeks now (although I can discount the impact of stress) And there’s certainly been no long term prognosis offered.

I’m hoping for some more info when ultrasound and bloodwork results come in. And if I learn anything new, I will certainly share.

[Beedee87 in reply to M8118]

Hi, thanks for replying. Yes it does sound kind of similar doesn't it? Mine also seems to be idiopathic. However it sounds as if you have managed to get further in terms of the doctors following up your case, for me they are just proposing to do nothing - I think because my LFTs are normal. However I'm worried because I have almost constant right upper abdominal pain! Have the docs suggested to you that it may be related to autoimmune issues? I looked at your profile info and you mentioned skin and eye inflammation and that made me think of Behcets or Sjogrens syndromes; have any of your doctors said anything about investigating the cause further? What bloodwork are you waiting for? Fingers crossed for you.

[M8118 in reply to Beedee87]

We've looked somewhat at auto-immunity as a potential cause, but have done limited testing. So far, nothing conclusive. The skin/eye issues are rosacea, but the underlying cause of that can also frequently be auto-immune related, so I would not be surprised if all these 'inflammation' issues had some common cause.

The bloodwork that's been ordered all has to do with blood coagulation -- making sure that things aren't "too thick" and therefore resulting in so reduced blood flow issue / clotting with the liver and portal vein.