Help needed: Hello, I'm at my wits end... - British Liver Trust

British Liver Trust

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brendym73 profile image
4 Replies

Hello,

I'm at my wits end and need advice. For over 10yrs now I've suffered with pain in my right hand side, nausea, fatigue and a general feeling of being unwell. I saw a liver specialist who recommended an ERCP. I changed my doctor to one who was closer and he performed an ERCP which resulted in pancreatitis. A second ERCP was done even though I felt improved a few months later. Another was performed 2 yrs later. Even though my symptoms continued I was refused another ERCP and eventually told that my problem was fatty liver.

As a usually active person my symptoms are now debilitating and my quality of life drastically reduced.

I was hospitalised with the pain last weekend and told I had a possible infection. I was put on an antibiotic drip but it was soon after removed and I was told I could go home.

My specialist has referred me to a general physician but I have to wait two months for an appointment.

The pain in my side feels like something is about to explode and I'm so weary I could cry.

I don't know where to turn. Can anyone help?

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brendym73
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4 Replies
dianekjs profile image
dianekjs

Hi, I don't know a lot about this, but I do know that complications from the ERCP itself aren't uncommon and may need immediate attention. It could be pancreatitis, bleeding from a puncture/injury that occurred during the procedure, or an unresolved infection. If your pain is severe you need to be seen on an emergency basis. Please call and tell them your situation is urgent and insist on being seen. Best of luck and keep is posted. I hope you find relief soon.

dooley1 profile image
dooley1

So am I correct in assuming that there is no problem with your bile ducts that they could see and that they've diagnosed you with a fatty liver? Fatty liver is a bit vague as there r various degrees of fat infiltration, an ultrasound is a starting point for detecting fluid or size of liver or changes in texture but it's not that effective in determining the extent if any of fibrosis,maybe you could request first a liver ultrasound scan then a fibroscan to detect the stiffening (scarring) of the liver. You can't live like that, in constant pain you need to talk to your GP again if you can but GPs notoriously don't have a comprehensive knowledge of complicated liver problems so maybe as suggested the ER will be your best bet.

Good luck

webpro5216 profile image
webpro5216

interesting reading this, i had chest infection which somehow resulted in Hep.E, sent for x-ray which showed up Opacity(think thats spelt right!) in right of chest but further x-ray showed up as clear! nurse has recently told me that they found evidence of smokers disease(not sure what she said it was called!) but not to worry as x-ray can't diagnose this. i still have pains in stomach(after eating/hunger. sitting but all tests clear(only explanation given is symptoms of Hep.E!) anyway i suggest you ask about smoking disease(i have not smoked since 23, 45 know!). Dr seem to be keeping this from me as it has not been mentioned only by Nurse(don't think she was meant to tell me!). if the problem with my right side is to do with this(still get pains) then may be it is the same for you. i suggest asking your Nurse. are you short of breath?

BLTHollyDawson profile image
BLTHollyDawsonVolunteer

Hi brendym73,

Are you seeing a hepatologist? Did the doctors give you an indication of what they were looking for when they did the ERCP’s? They are usually performed to look at the bile ducts, pancreas and gallbladder when used as an investigative procedure, but they can be used as a treatment also.

It is unusual that you have had so many if fatty liver is thought to have been the cause and it is not advanced. It is also unusual for fatty liver to cause pain.

I would recommend you ask your GP to refer you see a hepatologist, and be persistent until you get a diagnosis, two years is a long time to be in pain and as you mentioned it is now affecting your quality of life.

Kind regards

Sandy Forsyth

Patient Support and Information Manager

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