Pain and PSC

My 13yr old daughter seems to have pain to the left of her belly button and sometimes radiating to her back and other times in her lower back. Some days it’s so bad she doesn’t go to school. Dr doesn’t understand the pain and if one more Dr says its a pulled muscle she may loose her mind. As a dancer she knows the difference. Anyone else with back pain?


Have they mentioned her spleen at all?

I found one report that showed it measured a bit large but just a tiny bit. Bu t no they have not said anything about it. She is miserable tonight again.

I’m sorry to hear about her pain. She’s in my prayers tonight! I spoke with my fiancé and he hasnt had too much pain in the region your describing. He did however have a lot of pains when he had strictures in his ducts, an ERCP cleared it though. Are you seeing specialists?

Lol… On the specialists. We have two great children’s hospitals here but her Dr has only had 5 patients in his career, including her. He has left the hospital he was at for the opening of a new children’s dept at another hospital, but not seeing patients for 2months as he transitions. We were able to secure an appt with another Dr, but not for 2 more weeks. So we are in limbo praying for two weeks with no issues. It’s a sore subject, it amazes me how hard it is to get a child into a Dr these days, we only got the appt because we found someone to pull strings.

I might be a little late in responding, but I know Mono affects the spleen. Has she had a blood test for Mono? or has she already been diagnosed with PSC? I can remember lots of cramp like pains in my left side, but I don't know if it was related to PSC or if it was just gas.


I have had pain on my lower right back as well... unfortunately no answers for it though.....

Hi Jen

My 13 yr old son has recently been diagnosed - he had the most awful pain around his tum and up his chest and in his back - in fact he was treated for indigestion for 18months - along with his psc he has ulcerative colitis - he is on his psc meds but also salofalk for the uc - may be completely diff but hope this helps , we were like you guys, nearly lost our minds before we got an ace gastro surgeon who had worked in hepatology - good luck xxxx

Thank you all so much for the info. I keep finding new questions to ask the new dr we are meeting with next week. We have almost made it a whole week at school!!! Although I’m a little nervous about since she came home from school and went to bed, but she is back up again :slight_smile:

I am so thankful I have seen this. I am hoping your daughter is no longer in pain. My daughter was told the pain was caused by her horse back riding. But she took a few weeks off from riding/jumping and the pain continued. They keep saying it's muscular also. Did it resolve? Fingers crossed your daughter is not still experiencing this pain. And if it is

Hi deena,

The pain improved with a complete med overhaul. But no it’s not completely gone, it’s seems to flare up every 7-10 days. My daughter is a competitive dancer so they tried telling us it was muscle pain at first too, but we insisted it wasn’t. We went through the whole rheumatologist route as well but she was cleared in that area. I hate to say this but the dr just don’t get it sometimes. This disease is just crazy! If you ever want to chat via text or email I can send ou my info ■■■■■■■■■■■■■■■■■■■■■■■■■■■. We are on this journey together

thanks for sharing. my thoughts go out to her.

Praying for you, Jen. May The Lord heal your daughter with such success that all who witness it knows undoubtably it was a miracle created by Him. Allowing your daughter to dance and sing his praises for others as well. Happy (early) Mother’s Day. Xo.

Thank you Jen. Thoughts are with you and your family

I know this is an old post but I was looking through older posts and thought I’d tell you my experience with this type of pain. I was diagnosed with Crohn’s Disease at the age of 18. I was diagnosed with Primary Biliary Cirrhosis almost five years ago but the diagnosis was later changed to PSC. I’m having another liver biopsy in about a week and then will have and MRCP.
I also experience the same pain in the same place as your daughter. I’m pretty sure it’s due to a stricture of my small intestine (ileum). I’m having a small bowel resection at the same time as the liver biopsy.
I’m not sure of your daughter’s history, but has she been looked at for Crohn’s Disease or Ulcerative Colitis? They are both forms of IBD. IBD is very common in patients with PSC.

I have UC and PSC and experience pain in my liver area almost daily. My UC has been in remission for years, proven by scope only 7 months ago. However my liver pain is horrible some days, typically felt in the upper right quadrant of the abdomen, just beneath the rib cage. The pain is often vague and dull, but it can turn sharp and severe and may occur with back ache. Although the liver itself doesn’t have pain receptors (as the doctors love to tell us), the membrane that covers it does, and if the liver swells it exerts pressure on those receptors and causes pain. A cup of warm lemon water, eating no to very low fat diet, and heating pads all help, but I haven’t found a cure so far…

Sorry you are having RUQ pain. A couple of thoughts.

  1. When was the last time you had labs done? What was your bilirubin then?
  2. If your bilirubin is much over 5 and you have not had an ERCP recently, you are probably due one. Sounds like you have a bile duct stricture that needs to be balloon dilated to get the bile flowing again.

I’d make an appointment to see your hepatologist as soon as possible.


I know this is old but here is my story. I have had psc for 14 years. Had right side pain before and after gallbladder removed. That has subsided as of now. I do have a low back ache a lot and Dr say it’s liver but not sure why it hurts where it does. Seems they try to help but every patient has different symptoms. I’m not on any meds so that is not a side affect for me. Hope your daughter is doing well. Best wishes!