Thank you for your time in reading this! I hope someone can answer some questions. I was diagnosed with PSC in 2009. I'm starting to feel like I'm alone and am losing faith in the doctors in my area. First of all I would like any comments on my pain. I experience pain in the upper abdomen right below my breast bone and upper right area just below my ribs kind of where my gallbladder should be (which was removed in 2008). It normally comes at random. It is so bad that it physically makes me sick and really hard to stand up straight. It seems to have no correlation to the foods that I eat or anything that I do. I have seen a few doctors about this, which led to the removal of my gallbladder, and eventually the discovery of PSC. However, I have been told by these doctors, including the ones that I saw at Mayo Clinic, that PSC doesn't cause pain. Therefore, I haven't received an answers about it. I don't know about any certain tests that they have done, but every time that I had this pain and received doctor care, my white blood cells were high, including a specific liver enzyme. Has anyone else experienced this pain? Or does anyone have any idea what it could be? I have my suspicions, but curios about what others have experienced.
This leads to my next question. Does anyone here live in either South or North Dakota that have any recommendations for doctors other than Mayo Clinic in Rochester, MN? I haven't had any luck with answers, even at Mayo. I'm losing faith in doctors and I know that's not good. If anyone has any suggestions, please, I'm all ears!
I have this pain as well. Sometimes it’s associated with meals but not always. I was diagnosed in April 2012 and have had UC since 1999. Sounds like gallbladder attacks but mine always seem to check out just fine I thought maybe it has something to do with the liver but dr says it isn’t unless I have fever and chills with it. It’s strange and sucks. Sorry to hear you deal with it too and also don’t have answers.
Thanks for replying. They thought the same for me, too, about that pain. They were not sure what it was until I started itching after the pain went away. Then they started realizing that it was liver related.
I too have pain in the same exact spot. My GI doctor in my city said that people with PSC DO have a sensation of pain and just annoyance in this area. My husband had asked what the pain was and will it go away. He just said unfortunately, it will not go away and a lot of people have this. :( It sucks I know. I just had my biopsy done and I have to play a waiting game to get my final results. I was told that I could have PSC (yeah, just now) or have an overlapping condition that causes the same illness. I was just called on Friday (I had to call them and play phone tag...lol) and told it was not cancer but the nurse would not tell me if I do or don't have PSC. I will ask about the pain when I see him again and post more of what one can do.
I have the same pain as you describe! My doctor doesn’t know what is the source of the pain and she is unsure about the pain being associated with PSC . I take Morphine to ease the pain but I hate the horrible side effects it causes (nausea, confusion etc.). I’m trying to get my hands on some medicinal marijuana. I heard it is better in terms of side effects and it contributes to a healthy appetite.
I hope you find answers. Whatever your diagnosis, I pray everything goes well for you! Not knowing what is the cause of the pain is horrible.
Katsy said:
I too have pain in the same exact spot. My GI doctor in my city said that people with PSC DO have a sensation of pain and just annoyance in this area. My husband had asked what the pain was and will it go away. He just said unfortunately, it will not go away and a lot of people have this. :( It sucks I know. I just had my biopsy done and I have to play a waiting game to get my final results. I was told that I could have PSC (yeah, just now) or have an overlapping condition that causes the same illness. I was just called on Friday (I had to call them and play phone tag...lol) and told it was not cancer but the nurse would not tell me if I do or don't have PSC. I will ask about the pain when I see him again and post more of what one can do.
I had such attacks many times before 1998. Then in 1998, a doctor while performing an ERCP opened the common bile duct permanently by snipping the valve (I think it's called a valve anyway) so that any stones could fall through from then on. I've not had any pain since. The pain was just as you describe. It would take me about half hour to get over an attack. How long does it take you to get over an attack?
Anyhow, he put a stent in that day but it passed very quickly and I don't believe it's in there anymore. I still have my gallbladder, by the way.
I do not have my gallbladder anymore and I have been looked at multiple times for any stones left inside me and they have not found anything. It can take as little as a half hour, but when I was first getting them, I'd be in intense pain for hours. The longest time was 11 hours straight. Now they are more like a half hour to an hour, but my "really bad ones" will come and go for about 3 days lasting about a half hour to a few hours off and on.
Lara said:
I had such attacks many times before 1998. Then in 1998, a doctor while performing an ERCP opened the common bile duct permanently by snipping the valve (I think it's called a valve anyway) so that any stones could fall through from then on. I've not had any pain since. The pain was just as you describe. It would take me about half hour to get over an attack. How long does it take you to get over an attack?
Anyhow, he put a stent in that day but it passed very quickly and I don't believe it's in there anymore. I still have my gallbladder, by the way.