I have been struggling with pain on the right hand side of my abdomen for over one year. I had my gallbladder removed in 2021 and then my appendix out in 2022. Three weeks after the appendectomy, a new sharp pain began; initially it was thought to be related to my surgery.
Since then, I have had CT, US and MRI scans and the only thing that has been seen is three tumours on my liver - they were not there on previous liver scans done when diagnosing the appendix and gallbladder problem.
The main area of the pain is my upper right quadrant - where my liver is. I have seen consultants who keep saying that the tumours are not causing the pain but not telling me how they can be so sure.
I am waiting for MRI results and to have a TBIDA scan to check the function of liver and biliary tree. As I wanted to have more time to speak to someone and ask them for more information on the tumours, I made a private appointment with a consultant I had not seen before.
It was a disaster. In a nutshell, he decided in a very short space of time and with not much medical details, that the pain I am having is due to my state of mind and that he felt any further investigation was pointless. He even went so far to say that I most likely did not need my previous surgeries and the pain I had with those was in my mind!
I pointed out that my gallbladder had too many stones to count and kept causing a blockage and that the appendix had burst along with wrapping itself around my small intestine - this detail I got from the consultants at the time.
I gave up when I said "putting the pain to one side" and asked about the nature of the tumours, he just replied - "they are not causing the pain". He obviously was not listening to a word I said.
I am not clinically depressed, I do get a bit low at times, which I am sure is to be expected with being in this level of pain 24/7 for over a year. It has caused me to lose my job due to ill health.
I do sometimes think about if I am doing enough - but I am being proactive with trying to get to the route of problem, but also have days where I switch off to chasing things up and distract myself as much as possible with crafting or reading.
I had tried to return to work last year on reduced hours, but I couldn't manage it due to the pain.
I take multiple medications which include morphine and gabapentin. I am someone who is reluctant to take paracetamol usually.
I am here to know I am not alone in this, that others actually know how it feels to be in such a situation.
Thank you for reading,
Emma
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Elverra30
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I can totally understand what it’s like as I have chronic pain with no definite cause, unfortunately it happens, one Dr told me “ we are good at diagnosing what it isn’t but can’t always tell what it is”.
I’ve had lots of surgery over the years and adhesions are a big problem, after my gallbladder op 3 years ago I get pain in the area, didn’t get any pain before !
I’m having another MRI next week to check on liver atrophy, bile ducts, spleen lesion and aneurysm, none of which the Drs are that bothered about 😠
It’s so hard chasing appts and results all the time, sometimes I just can’t be bothered.
I can’t offer any positive help but you are definitely not alone in this x
Thank you, it helps to speak to people who know what it is like. It's surprising at what drs aren't bothered about, sometimes I wonder if its because it is complex and they lose interest if they can't fix it quickly.
Definitely complex cases worry them, my GP said I was “to complicated” and they now won’t have anything to do with either thyroid or ulcerative colitis both I’ve had most of my life.
It’s also a gender issue as it’s been proved that us ladies are generally seen as anxious hypochondriacs so not given the same respect and treatment as men. I’ve had this first hand as my late husband and I saw the same Cardiologist and if my husband had a problem or needed tests it was sorted very quickly with emails and phone calls between them but the Cardio had little interest in my problems and as soon as my husband died he discharged me from his list with outstanding problems not investigated, I was fuming ! And sadly gender bias is rife throughout the medical profession although women Drs are sometimes better.
I’m hoping my MRI shows something that needs fixing then I will take great pleasure in telling them I told you so 😆
Hi, your not alone, I've been in pain for year's with hardly any investigation, does my head in, still on waiting list to see a spine specialist, been waiting over a year, I'm currently in pain at the side's of my stomach on top of chronic back pain, going to see doctor today hopefully about stomach pain, I'm 55, so not related to period pain, can't wait to see what they claim with no investigation, gonna bring a urine sample so they can at least do something while I'm there 😊, good look sweetheart, know how you feel xx
I hope that your appointment goes/has gone well, and that they listened to you. I think that is the worst thing, is when nobody takes what you say seriously.
To answer your question, the liver doesn’t have any pain receptors, therefore the pain wouldn’t be caused where the tumours are inside the liver. However, for some patients the tumours press on the outside of the liver, which can cause a lot of pain in the right upper quadrant, sometimes all the way up to the shoulder blade.
Regarding the medication you’re taking for the pain, the drug Pregabalin is much better with less side effects, however more expensive to the NHS . There’s a drug called Deluxatine which when combined with the Pregabalin make a very effective pain treatment, whilst also helping with and symptoms of anxiety or depression, as a low mood will increase the level of pain the patients experiences.
On your next medical appointment I would ask where the tumours are located within your liver.
Regarding your experience with a private consultant I’m afraid it’s not an uncommon experience, as it seams the consultants don’t listen to what’s being said.
I have previously spoken with a nurse from the british liver trust who explained to me about the covering (did say another word but cant think of it) which does have nerve endings. One of my tumours is causing distortion of the contour of the liver, so it is poking outwards a bit. One is an adenoma and the third they have not identified yet.
I am waiting for another set of MRI results to come through, it may not show any change.
Thank you for the medication tip, I shall ask on my next seeing someone.
Hello Elverra30, at last someone who has a similar problem to myself. My pain has been around since I had an hysterectomy in the late 80s. I have been diagnosed with arthritis, and wear splints ect but due to past medical history I often get labelled as depression which I have challenged on more than one occassion. Another cause of chronic symptoms can be a side effect of tablets you take making the symptoms worse of the underlying illness. As in gabapentine causing coughs, steroids causing breathing problems & hand tremors, and tablets that damage the liver & kidney function. I am not saying thats it in your case but xrays & MRIs can only detect definate abnormalties in organs . In your case maybe you need a medical reveiw of your health with a medical consultant not just a pain reveiw for cause. Does that help I hope so. oops I forgot one of the causes of muscular pain can come from several organs including liver.
I am sorry to hear that you have been in pain for so very long! Arthritis is a unpleasant thing, I have it in my thumb joints which flares up from time to time.
They have detected some tumours on the liver and I am waiting for a TBIDA /nuclear scan to check liver and biliary tree function.
I am hoping to have another consultation soon so I can discuss meds etc
Oh my goodness, you have been through the wringer and back all again. I am so so sorry. I have upper quadrant pain as well for awhile. Four times I went to the ER due to the pain being out of control. All four times, I had a benign cysts during ovulation trying to get through and getting a bit stuck. I too have had four abdominal surgeries and believe adhesions are a huge part at play with my overall chronic pain. I saw a surgeon who read my last post op report and said no way, I can't go in an help remove. My entire organs are wrapped in a bee hive looking sack all together and they can't tell what is scar tissue and what are the organs. It really put me in a rut. People without chronic pain do not understand at all. I too had to quit my job due to health reasons. Everyone thought I was just crazy and ended up leaving my industry after 25 years with people thinking I'm nuts. I am so sorry for the comments on "it's all mental." I think too many of us get told this time and again. My only suggestion for pain would be to take a look at what LDN can do. I too am on Gaba and LDN. I have allergies to all pain meds so I need to use anything and everything off label. LDN significantly increased my mood as well and was able to come off of some other meds at the same time! Keep us posted if you can!
I have, all clear on that front. I sometimes don't believe my OBGYN though. My Grandmother had it and sister. Just frustrating on the months it happens because it doesn't really pass until after my period is over. They say I need to go back on birth control and that may fix it. I'm not adding another med into the kit at this point!
I have visited the ER a few times too, each time coming away with a new medication or instruction on increasing current ones.
It is astonishing how much impact adhesions can have, after your surgeries there would naturally be a lot of scar tissue and I am sorry they aren't able to intervene. Out of interest, how did they see that the scar tissue was so severe? I have been told that no scans can pick up on them, only physically looking can spot them.
So I have had three c sections and one umbilical hernia repair requiring four abdominal surgeries. On my last birth, they had a really hard time getting my son out due to the adhesions......this is where the post op report reads like a horror story. They were struggling not to hit other organs, but the real issue was the anesthesia that didn't hold. I felt every cut until my son was out and then they doped me up to the moon. It is one of my biggest PTSD triggers as it's the one dream that occurs over and over....well nightmare. So yes, no scans can show them, but when you open up, the adhesions are there with all their glory, ha!
So LDN is interesting to me. It is formally called Low Dose Naltrexone. Naltrexone is used for detox from opioids or alcohol and let's say that dose would be 100 mgs a few times a day. I take 5 mgs of it only so it's kind of like micro dosing. It is an opioid antagonist and blocks pain but also reduces inflammation. It's currently being used a lot to treat chrons and MS. It's helped me tremendously with some of my joint issues. However if you are already on narcotics and it isn't enough to control pain, LDN wouldn't wok. It would fight against your narcotic.
Oh my goodness, you have been treated terribly Elverra30! I hope you find out what's causing the pain you're suffering really soon. Good luck and best wishes x
This is from poor doctors who don't know their A from a hole in the ground. If they can't figure something out, they blame it on the patient. How dare you make something up like this?
Hi, I know exactly how you feel. I had my gall bladder out last year and I have had nothing but trouble since. I now have severe acid reflux, every time I eat or drink it feels like food is coming back up, I have recently had a Barium meal at the hospital results due in about a weeks time. The doctors thought it was stomach cancer even though I have no symptoms at all? I have pain in my incision mark in the middle of my stomach and the doctor doesn't know what it is? waste of time really because I am still in pain. This isn't connected to your problems but I have developed a condition called Complex Regional Pain Syndrome which means that the pain I am in is all to do with my brain. It is very rare and the doctors don't know how to treat it. So this could be what you are experiencing. It took 3 years for the doctors to diagnose me. Good Luck and let me know how you get on? xx
Hi I've been in chronic pain for over 12 years ago I have some idea of what you're going through. All your GP to refer you to your local pain clinic - I know a lot of people who have found this really helpful. And never be afraid to speak up. No GP or consultant can tell you that your not in pain, or the pain is not caused by the tumours. I went to hospital about 8 months after fracturing my eye orbit because I was still in pain. I was told be the consultant that it was'just patient perception'! I would think that all pain is down to patient perception!
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