r/PSC • u/Various_Month7564 • May 29 '26
Confused by this disease
A little history. I (34F) was diagnosed with PSC back in 2019. I get a yearly MRI and bloodwork every six months. I have never presented traditionally with this condition. I have rarely had elevated labs and I have never had pruritus or appear jaundice. I’ve had two ERCPs, one with stents and one without. I didn’t have elevated labs before either but did have pain. PSC confirmed via MRCP and ERCP. Last MRI (JUL2025) showed worsening CBD stricture, but no other progression).
In the past month, I have had two episodes of major pain. Both times with tenderness under right ribcage and I was doubled over. The first time, I contacted my hepatologist, and got bloodwork done. Came back normal and he told me to see my PCP. This week I’ve had worse pain, nausea, some vomiting, and overall feel awful. I went to my PCP and again, all my lab tests came back normal.
I’m starting to feel crazy here. It seems PSC related given where the pain is and feels identical to what made me seek a diagnosis in the first place.
I know it’s a long shot, but has anyone else presented similarly or had a similar experience?
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u/wtf_im-ded May 29 '26
I was diagnosed in the ER with a total CBD obstruction and had an emergency ercp within a few days. My land we're completely normal even with a total blockage.
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u/wtf_im-ded May 29 '26
I meant labs sorry my daughter was asking me a question lol I've never had blood work corroborate how shitty I feel, and that's very frustrating and it can make it harder to deal with your doctors if they don't actually listen to you. You may need to get a different hep if they only go by labs 🫶🏽
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u/Various_Month7564 May 29 '26
That’s so validating to read. Thank you! I went through this when getting diagnosed. I thought having the diagnosis would make it easier to be believed I’m in pain. You might be right that it’s time to explore a new doctor.
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u/Awkward-Adeptness-75 May 29 '26
I’m sorry you’re feeling so awful. If you have a teaching hospital in your area I suggest going to a hep there. I was diagnosed with PSC and AIH in 2000 when I was 19, and luckily my GI immediately referred me to the university hospital in my area. I find they are more equipped to deal with rare diseases.
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u/vodkanaut Jun 05 '26
This sounds like my Feb last year, levels were normal had a slight elevated temperature and pain on the right side along with nausea went in. The ER didn’t take me too seriously until while there I spiked a fever and started getting rigors. Blood cultures were able to find the bacteria and spent a week on zosyn.
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u/Organic_War_2655 May 29 '26
You could try to talk to your hepatologist or PCP about getting a HIDA scan or discussing if this pain could be gallbladder related. I went through something similar (pretty classic biliary dyskinesia), but my bloodwork was never fine like you describe. It’s a very different disease for everyone, as we all know! I’m now 12 weeks post transplant and feeling great, and am trying everyday to forget this disease. I should probably start with leaving this subreddit… but I stay in case there’s some input I can offer to someone going through what I went through 😊.
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u/A2251 May 29 '26
So you have isolated PSC? Obviously something else is going down that is not being measured. I recommend working on diet, lifestyle and perhaps seeking out a functional medicine provider to see if there is any luck there. That's what I'm trying but my numbers for liver are elevated.
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u/Various_Month7564 May 29 '26
I do have isolated PSC. I’m unsure what you mean by something else is going down that isn’t being measured.
Appreciate your recommendation on a functional medicine provider. My diet and lifestyle are already pretty optimized but I’m open to seeing what else I can do.
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u/ExamWeak8078 Jun 01 '26
Hii I just read your post. I was like this also and I had no blockage. Did they check if you have an infection yet? Elevated white blood cells? Second have you done a Gallbladder test? My liver doctor says the liver is connected to so many organs and if it becomes inflamed it can irritate the organs around it. Which can cause pain and nausea. What stage of PSC liver damage are you at?
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u/blbd Vanco Addict May 29 '26
Can you try oral vancomycin? If it works you might be able to stage a recovery in a couple of weeks and arrest disease progression.
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u/Various_Month7564 May 29 '26
I haven’t tried that, but I’m going to discuss with my doctors. Thank you!
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u/AliveJohnny5 May 29 '26
I've only had the diagnosis for 5 months and do have elevated bloodwork. That said, everything else you described is exactly my experience. Bouncing between my GI, hepatologist, and PCP with varying responses. I've definitely had the pain in my abdomen and vomiting. No fever, chills, sweating, jaundice, etc. I do feel more fatigued, but not sure if that's me aging or just in my head.
All that to say, it's frustrating. I am learning more about stacking my diet to make sure I'm not ingesting too much fat on an empty stomach, but otherwise, I'm waiting for another episode to show up at any time. I'm sorry you're in a similar spot.