Carol

[Mead7carol]

Is there anyone who is suffering like me in upper right pain in abdomen and not getting any help from doctors or hospital they thing it is all in the head Because X-Ray and ultersound blood tests are normal. I do not know where to get help and relief from constant pain

[Byjas]

Hi

Yes I am in a similar position. I suffer with pain below my ribs on my right upper abdomen. When I was diagnosed about 6 years ago it was really just discomfort but now is quite painful. Like you my recent ultrasound was normal and since taking Urso my LFT's are within normal limits although my GGT is usually 3-4 times normal values. My consultant say's that the pain can be a symptom of PBC but didn't explain why. It is difficult to understand what is causing the pain when my ultrasound doesn't show any abnormalities.

[Mead7carol in reply to Byjas]

Thanks for replying. I just can't understand when all the tests are coming out normal and the pain I am in like you gets worse each day. Feel like I am at the end of my tether with it.

[NotorDJP]

Yes. I had this before my diagnosis. They kept doing ultrasounds as my ALP skyrocketed and told me to just lost weight. I finally went to the ER for a non related complaint and the doctor there mentioned I needed to find out why it was so high. It was 500 at that time. I went to the NP in my doctors office and she did the GGT (which nobody had every thought to do) and It was crazy high. my pain was pretty bad. Once I got on urso, it went away for the most part unless I over eat, or take too many pain meds for something. I'm having pain again now, but I had surgery for thyroid cancer a month ago today. So between the pain meds, the anesthesia and getting used to thyroid meds I have been having some pain. I go to my endo next week to see if I have to take the radioactive iodine treatment. hopefully I can forego that, as my tumor was super small.

The liver itself isn't hurting, but its inflamed and swollen and causing the sack around it to have pressure on it.

Are you diagnosed yet? if you are, you need to see if your Urso dose is enough for you, try make sure you don't eat a lot at one sitting (for me its almost like my liver doesn't have enough room when it get irritated and it hurts me.) it hurts my back too.

If you aren't diagnosed, you need to have a biopsy to be sure. I know that isn't popular in the UK and many here think its a waste of time, but it was the only way I knew for sure I had it, and what stage I am in.

[June9961 in reply to NotorDJP]

I too was told to lose weight because your liver doesnt ache. However when they did an ultrasound they said I had raised lymph nodes on the duct between the liver and pancreas. However they said that wont cause pain either. I gave up and put up with the pain 😟

[evelyn1]

I suffer from it all the time,take morphine slow release pills as well as orimorph. Was at 1st told that it was due to my enlarged liver but at last meeting with surgeon she told me its nothing to do with my liver or pbc but its my bones. Cant seem to understand this as all my bone density scans have came bk normal.To say that I am bewildered is slightly understated as I have been in & out of hospital constantly since beginning of year with this horrendous pain. I am now lost as to whats going on so I just take the meds & suffer in silence. Really down hearted since my last visit with specialists so hoping my next appointment goes more smoothly and my confidence in the professionals returns as they do such a wonderful job. I am currently on the transplant list so need all their help & support but keep getting told different things all the time.

[Mead7carol in reply to evelyn1]

Thanks very much for replying I fully understand what you are going through. It is causing more problems because I they really do not beleive I think I am in pain and think it is in my head, I have had two different consultants referred me to mental health team, I took the appointments and they could not beleive or understand why the y had sent me , all the reffferal said This patient is crying a lot. As I said to them yes I am depressed but not my mental health it is the pain I am not coping with why I crying. Like you I a on lots of painkillers

orca morph Liquid and slow real ease morphine tablets. As well as tramadol, paracotmols dyazepan. It is not pain killers I want. Like you I need to know why I am having pain, I still feel I may have a tear in my bowel, I have had two tears at the bottom end if the bowel where I had surgery 4 weeks ago. I came out of hospital yesterday and now waiting to see another gasterolgist in out patients. I am 65 and can not understand why they are letting me go through all this pain.

[krissy]

I had severe pain in my upper right abdomen as well until they took out my gallbladder, all my test kept coming back as normal until they did a hyda scan to see if my gallbladder was functioning properly as it was not doing the job it should they decided to take it out and after biopsies they found it was very inflamed, now I'm pain free upper right abdomen

[dollydaydreams]

I told my doctor about this pain and showed him it was just above my liver and told him it sometimes felt like someone had a fist in there and i just got told cramp and " there is nothing there" so I gave up, sometimes when i move i get a terrific pain, i have thought al sorts, lung collapse, heart attack even at times, i don't know what it is but it hurts, they could not tell me to loose weight as at one point i went down to 7 1/2 stone.

[PBCFoundation PBC Foundation]

Good morning Carol,

I have sent you a private message

Regards

PBC Foundation

[snowqueen13]

Hi Carol,

Sorry to hear to you are suffering. I too have pain in my upper right side of the abdomen and doctors up to now have ignored it however at my last appointment I had a new young doctor and she recommended further blood tests on my gall bladder and pancreas. She also mentioned there may be swelling in this area which may be the cause of my pain but as yet I have not had the tests so this is not conculsive for the reason of the pain.

I hope I have been of some help and that you are feeling better soon.

[tlm82568]

Hi everybody. I was diagnosed with PBC a year ago. I'm scared and very confused. My liver functions and enzymes are all normal. I have an elevated ama. I am always is terrible pain. Right side under ribs. It's getting worse daily. Cat scan showed nothing. My dr is thinking it maybe Spinchtor of Oddi? Has anyone else had this? I feel and throbbing pain. It's terrible. I do take 300 my urso..Cholestyramine for the itch and loose stool. I have lost my gall bladder, appendix and full hysterectomy. I'm not sure what more can happen. I was checked for other autoimmune disorders. All neg. The itch is on and off. It's more with the pain. I'm only 46 and in all this pain and confused. Any help would be appreciated. I feel . scared and lost. I'm in Rhode Island. Thanks