Pain after pancreatitis. Is this normal?

Hi all, I really appreciate any advice as the doctors are stumped. Long post but I felt the history might help.

I am a white female, 42, prior to this in good health. Exercised regularly, non-smoker, occasional social drinker.

I had my gallbladder removed 5 years ago but continued to get occasional spasmodic pain in the mid upper stomach with no noticeable pattern. Attacks would last roughly 8 excruciating hours. No stones were found on scans and an ERCP with endoscopic sphincterotomy was avoided due to potential risk.

This February I had another attack however, it did not stop after the usual 8 hours, just carried on.

3 days later OGD

Another week on ERCP with endoscopic sphincterotomy was performed

Acute pancreatitis followed and I was admitted to intensive care with sepsis

Gradually began to recover when left lung began to fill with fluid, eventually 1750 mls drained

After this, as the pancreatitis began to settle, I realised the initial upper stomach pain was still present. It is mostly manageable but always there and every 3 days is unbearable again but hasn't reached the peak pain first experienced. (However I'm on a lot of painkillers). Additionally, I have SEVERE, and I cannot stress enough how severe, pain across the bra strap area of my back when I lie down. (This part has really baffled the doctors as no one can fathom why this should be the case) And lastly, I get sharp pain in both lungs symmetrically under my bottom ribs and across the bra strap area with any deep breath and get out of breath very quickly, for example talking.

I am completely unable to lie down because of my back and unable to lean forward or roll either side due to my stomach. I have slept sitting up for months now, unable to work, walk upstairs without stopping etc.

Bloods are not showing any problems any more. Recent x-ray showed an slightly enlarged liver. Prior to that MRI hadn't identified any remaining problems. Pre-existing endometriosis which follows a distinct pattern and is a quite different pain.

My local hospital medical and surgical teams have no ideas left and have referred me to a top London liver specialist who is willing to investigate but was honest and said he wasn't sure he could help me.

Any ideas would be so graciously appreciated. Just hoping it rings a bell with someone as I don't know where to turn. Please let me know if this post is more suitable on another board

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