Hello I’m new to this forum and looking for advise of anyone that also suffers with FNH.
December 2020 I had a ultrasound which found six growths the largest being 4cm was sent for a urgent referral and had MRI with contrast they told me they’re likely benign fnh and liver adomeas they then had a x ray meeting and said likely benign and fnh and for a follow up mri in six months.
My concern is the right side pain I suffer with most days in my back under my right shoulder blade I would say a burning feeling. Went to a&e with this pain they took bloods for liver and said my liver function was fine but liver enzymes was slightly raised but they aren’t concerned they are just above normal range. No one seems to be too fussed about the pain I’m getting no one wants to look further in to it all I’m told is fnh dont cause pain.. hopefully someone could share there experience too?
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Bethwhite727
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Hi I’ve not been diagnosed with anything yet although I can sympathize with the pain your describing, I’ve had the same pain day in day out for the last year, nothing eases it, my LFTs were raised but ultrasound normal. Doctors have continually told me it’s muscular yet I really don’t believe this and am convinced it is related to my liver. I’m at a total loss and so worried.
My doctors are also telling me it’s muscular yet it’s only on my right side.
I’m totally at a lost now and don’t know what further to do other than to wait for my next MRI keep thinking they may have misdiagnosed me be something serious x
Hi - I’m sorry to hear about your issues. It can be so hard to get a clear diagnosis and sometimes it can be hard for the clinicians to diagnose the issue.
As for the pain I suggest you keep pressure on the Hepatology team - it can be referred pain from the liver capsule - the liver itself doesn’t have any pain receptors but if the liver is enlarged it presses on the capsule and that can cause RHS shoulder pain.
If they are convinced it is benign then you could ask for referral to pain management specialist in your local hospital - they might be able to help you. If they won’t refer you, you could try asking your GP to refer you.
I guess the key thing is to keep in contact with your Hepatology team and if you are concerned keep chasing them until you get answers that satisfy you.
Good luck and I hope you get your issues resolved.
Thank you for your reply. I’m only 26 year old when I last spoke to liver specialist he said they was confident it wasn’t cancer but want to do another mri in around June time. Would it pick it up in bloods if anything was abnormal with liver? It seems to just be on my right side under the right shoulder blade like a burning pain.
June is not too far away. MRI with contrast is the gold standard so you are getting the best diagnostic available. They should also repeat the bloods around the same time. Make sure you have your list of questions so that you can get your consultant to re-assure you. Bloods alone don’t pick up everything hence the MRI - the combination should produce enough data to make a diagnosis.
Thank you I did last have a mri which was in December with contrast and I will again have another in June with contrast. I have six tumours largest being 4cm the radiologist did a report saying fnh and others may be adeomas but then they had a X-ray meeting which decided on they are likely fnh I’m guessing the X-ray meeting they have a number of people look to decide
Hi Beth, how are you getting on with your issues? I’m having a very similar experience, I’ve been diagnosed with FNH and have quite a lot of pain but the consultant I’ve seen seems to suggest it just needs to be left and there’s nothing really can be done.
Hi,I had three MRI in total over a period of 9 months then discharged and I have six tumours. I get pain occasionally when first diagnosed it was like constant but I was suffering with health anxiety and thought they misdiagnosed me so it was like I was getting all sorts of weird symptoms when suffering with that xx
Thanks Beth, that’s really helpful. I wonder if anxiety is making me feel worse too. Were you given any advice of things to do to avoid flare ups or what to do when you have a flare up? I’ve been given so little information and just told to take co-codamol when I’m in pain x
Same I was given barely any info what so ever apparently they shouldn’t cause pain. I sometimes occasionally get a sharp stabbing pain that last a few seconds. But when I was suffering with health anxiety it felt like I was in very bad pain every single day this went on for months x
I’ve been able to talk to my sister (who is a doctor) and she has said it’s perfectly possible for them to cause pain if they’re touching your liver capsule (which can feel pain). There’s also studies published about patients with symptomatic FNH so I really think the ‘can’t cause pain’ line is wrong. I’m awaiting a gastroscopy to check there isn’t anything else going on but the waiting list is miles long x
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