Right upper abdo pain

Hey everyone,
I’ve seen a little info re pain associated with PSC but not a lot of detail.
At the moment I’m having pain or discomfort on a daily basis, anywhere from to a little stabbing twinge, that dull burning sensation, to intolerable misery making middle of the night off to Emergency in case something seriously bad is going on pain ( which I’ve had twice in the last 4 months).
I’ve dropped hours at work, used a fair chunk of my sick leave and have to consider every mouthful I eat in case it makes things worse (pain not always assoc with food, but definitely with any rich food - nb gallbladder is gone).
So. My questions are.
How much pain do others with PSC experience? And what kind of pain?
How much if any is considered normal? Is it just to be expected along with the diagnosis? (Only 4 months diagnosed now)
Or would others doctors consider it an indicator of a complication?
How do you manage / treat / function with PSC pain?

I'm sorry to hear that you are experiencing pain of any kind. I have never had any pain related to my PSC. I've had itching that was awful and had very painful gall bladder issues that led to its removal, but that's it. I'm sorry that you have to deal with that. All the best.

I pretty much am going through what you are going through. However, now I do not experience it nearly as much as you are, but I used to. I was diagnosed 4 years ago and I have seen quite a few doctors, including Mayo Clinic and they all have told me "PSC" does not cause pain. Medical websites, including Mayo Clinic's, says different. I believe my pain is related, however, not necessarily medically proven. I will try to answer your questions according to my experience:

1. My pain is also upper abdomen, right below breast bone and right side just below/under ribs where the gallbladder would be (mine was removed 5 years ago).

2. I really hope this is not going to be a normal and expected process....

3. I pretty much have to fight through the pain. I was given codeine for pain, and that seems to help only a fraction of the time. I saw that you used a lot of sick days and dropped hours. For me, I have yet to find a trigger for the pain. I, too, used to almost stop eating, but now I still haven't found any correlation between food so I eat as I please. I have tried to fight through any sickness that I have so that I can reserve sick days for any episodes of pain that I experience, as it can incapacitate me for as long as 4 days.

I really hope this helps you and if you have anything to add, please let me know, as I am also trying to figure this out.