Anyone diagnosed with Peliosis Hepatis?

Posted by kenzik @kenzik, Sep 27 11:14am

One year ago I went down a rabbit hole of tests to get to the bottom of severe digestion/stomach pain that has plagued me a good amount of my life. Ultrasound and then MRI showed lesions on my liver. Had a biopsy that my pathology team couldn’t identify and was referred to the Mayo Clinic. Came back as Peliosis Hepatis which I’ve come to realize is a very rare liver disease where you get blood filled pockets in your liver that appear as lesions. There are not a lot of risks involved in my case since they aren’t sure what caused it. What they know about it is that it is usually caused by medications, hormone or steroid use, none of which are the case for me. Anyway, I’m just looking to get some insights from others that may have this. Thanks!

Interested in more discussions like this? Go to the Liver Diseases Support Group.

Rosemary, Volunteer Mentor | @rosemarya | Sep 27 2:35pm

@kenzik, I want to extend a Welcome to Mayo Connect. I am a transplant recipient (liver and kidney at Mayo Rochester in 2009). When I saw your post, I had to look up Peliosis Hepatis because I had not seen that term before. And in looking for information, I found the same information that you have shared. According to the NIH article that I visited, it is a rare vascular disorder. https://ncbi.nlm.nih.gov/sites/books/NBK554470/

It is not surprising, nor conforting to hear that you were, as you say, down a rabbit hole of tests. I think that you are fortunate to have been referred to Mayo Clinic for testing.
I hope that someone with experience with Peliosis Hepatis will see your discussion and respond.
In the meantime, What is next for you, now that you have an identified diagnosis?

kenzik | @kenzik | Sep 27 6:04pm

Hi @rosemarya thank you for responding. I saw a gastroenterologist a year ago and he was not helpful at all. Basically told me he had to google the disease before he even came in my room. And then proceeded to read to me from his Google page all about the disease. As if I hadn’t already done that. I just had another ultrasound last month, and the lesions are basically the same size as they were a year ago. I feel like I definitely have flareups and times of remission? I guess? But as of right now, there is no game plan other than observation. They want me to have it looked at in another year to see progression or regression. However, I’m reaching out to this group because I would love to hear from someone with experience with the disease and how they manage the symptoms. My digestion has always been bad, but has gotten considerably worse the last several years, which I’m sure is related to this disease.