Why do doctors dismiss liver pain and ... - British Liver Trust

British Liver Trust

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Why do doctors dismiss liver pain and liver problems so much?

Amethyst91
Amethyst91

I am completely appalled by the lack of care effort that I have seen in the medical world in the last 7 months. What I don’t understand is why if you google upper right quadrant pain, liver problems show up but if you ask a dr they will never tell you that liver problems cause pain. I’m not saying dr google is what anyone should completely listen to but when you have every pain or issue on the list and drs just tell you that doesn’t cause those problems what do you do?? I’m finally getting my biopsy next week which I hope will give me some answers as I know my case isn’t an obvious case. I know my pain is liver as it started after drinking and I was a heavy drinker. My ast and alt never moved from 14 until the pains started, my ultrasound sounds show fatty liver, my mri shoes enlarged liver and portal vein. The pains are right around the liver and weird symptoms I have are ones you can read about in literature but every single dr completely dismissed it all. If my imaging tests didn’t show the evidence that it’s my liver I would believe or understand the drs but knowing there’s evidence it just blows my mind how they completely ignore it. It makes me feel as if they get paid for dismissing their patients instead of trying to help them in any way. I mean don’t get me wrong I’m hoping my issue is as mild as they treat it and I hope the biopsy shows but the slowly diminishing quality of life I’m going through is being ignored all around. I used to believe our health care was actually something that helped ppl but now if feels more like this false image. I guess I just needed to vent and I know I’m not the only person in this boat.

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50 Replies

Hi, I have liver cirrhosis and my GP dismissed the pain I get basically saying you can't get liver pain....... I beg to differ......spoke to my liver specialist and he told me that I was suffering liver capsule pain he drew me a diagram...... But it is something I will have to put up with, good luck on your journey Hayley

I feel like that happens way too often 😞Can I ask how you got your diagnosis after all the dismissal?

Hi, I awoke from a coma in hospital, and after that during my stay they did numerous blood tests, fibro scan and ultrasounds and the diagnosis was cirrohsis if it wasn't for the NHS I would have been dead I also have a fab liver consultant. Cheers Hayley

It's just GPs who have dismissed my liver pain.

My gp doesn’t believe me but she listens to me. The 4 gastros I’ve seen tell me they have never heard someone with liver disease complain about pain and just say simple fatty liver even though after 7 months it’s only gotten worse not better. My Hepatologist says I can have pain but doesn’t believe there’s really anything wrong even though my liver is 21cm and my portal vein is 15mm with 17 sec velocity flow. They all keep telling me it’s pretty much perfectly normal even though this pain I’ve been having for 7 months is not perfectly normal. I’m glad to hopefully get answers soon but so frustrated at this process and how they talk to me. Obviously I do have anxiety and I need to manage it but anxiety is not causing the issues I’ve been having and I might have less anxiety if they tried to help me figure things out instead of take my money and down talk to me.

And I’m sorry you had to go through that 😳 I’m glad your doctors and hospitals have been helping you and keeping g you well. Are you in the UK or US ?

It must have deteriorated greatly in the last 10 years then. My husband had outstanding care from beginning to end over the 4 years he was ill. From GP to consultant to Intensive care. I too as his wife was kept well informed of all the changes and all my questions answered with honesty. I was in a daze for much of the time at times even dismissive but they offered me great care and support. I know l am by far not the only one who received great care as l have read the stories of those on here who have had liver transplants and they too speak very highly of the NHS treament they experience.

Amethyst91
Amethyst91 in reply to Laura009

I’m hoping it’s not as bad as cirrhosis yet but I know there last evidence stating my liver is in bad condition but I’m always being told to see a therapist. They can hardly answer my questions when I ask if it’s not the liver then what is it. I’m great full my test don’t show severe issues yet but they definitely show not normal things that if left ignored will become problems and yet they ignore it. It’s so frustrating that I just want to give up. The o key reason I got the biopsy is because I went to ever Gastroentology office in my area and they all finally decided to do it to shit me up. They expect nothing and I pray that they are right but based on what I’ve seen and read from others I’m not convinced I’m so lucky yet.

TT-2018
TT-2018 in reply to Amethyst91

Maybe you should see that Therapist, without the NHS and the care I received from the doctors, I wouldn’t be here to write this reply.

All your results have come back as normal, mine certainly didn’t until after my transplant surgery.

Amethyst91
Amethyst91 in reply to TT-2018

I do believe treatment is different depending where you live. I won’t lie that they do give me the tests necessary and I am great full for that but when I ask for more detail and even what other potential issues besides liver I get dismissed. It’s just frustrating to be dismissed so much. It seems in the UK there is a bit more help offered but in the US they don’t really help build a plan with you unless your already passed the point if no return. It also feels like no one wants to connect the dots but just sends you to another specialist all the time.

Laura009
Laura009 in reply to Amethyst91

Liver care is very much up to the individual. There is no magic medicine any doctor in any Country County, city or town who can prescribe a cure for your liver or the capsule pain. You HAVE to consider everything you put into your body regarding food and drink in order to improve the condition of your liver. A multitude of illnesses with a multitude of symptoms which a doctor cannot find a reason for is definitely a reason to see a therapist as your doctor has suggested.

Laura009
Laura009 in reply to Amethyst91

Can we also consider we are in the middle of a global pandemic where people are hospitalised with horrendous life threatening symptoms and dying in their thousands every day. All healthcare services are being stretched to the limit by this but doctors are doing the best they can to help patients with other illness but have to maintain all the distancing rules to keep themselves and others safe under incredibly difficult circumstances.

joeburger
joeburger in reply to Laura009

Absolutely Laura I have two fantastic teams of consultants between York and Leeds and also my GP who keeps an on my blood results. Without these amazing people in our NHS I wouldn't be here today.

Laura009
Laura009 in reply to joeburger

Great to hear. ❤🧡💛💚💙💜

Without the care of our NHS I would not be here today, nearly 13 yrs on..I suffer pain , and yes its the capsule that surrounds the liver as there are no nerve endings in the liver itself.

Sorry to read of your frustration, I haven't had a full liver function test since Nov 2019 due to obvious reasons.

My next telephone triage is on 2 Feb, with my hepetologist.

I applaud 👏our NHS for all that they are doing in this awful situation called covid

Laura009
Laura009 in reply to Millie09

💙💙💙👏👏👏

HiI'm so sorry you are suffering. I do think it depends on which consultant you see. In August of 2014 a professor said my pain was muscular, nothing to do with the liver !! In 2016 I managed to get an appointment with excellent GP at my drs surgery . To cut a long story short, she referred me and I was diagnosed with nafld caused by meds from my drs over the years. My liver is so enlarged it stretches the capsule around it which causes the pain. In the November of 2016 I had a biopsy which diagnosed Nash. Anyway, after me pushing for a fibroscan in late 2019 I finally had one in early 2020. I was diagnosed with compensated cirrhosis. Yes, I'm still in pain with this and my many other conditions. I'm due my 6 monthly scan on 28th of this month.

Good luck with your biopsy. Please let us know how you get on .

Love and hugs Lynne xxxx ❤️💜❤️💜

I was diagnosed with liver cirrhosis 4 years ago, they found it by accident when scanning for something else, mine is not caused by alcohol but I have not drunk since to help my liver. I agree that doctors deny that you get pain as I do too. I have had more recent conditions unrelated to my liver but the care has been excellent. I feel with my liver care I am constantly chasing up appointments, results, tests etc myself. There is a specialised liver nurse at my local hospital but as my condition is not alcohol or drug related I do not have access to the services she offers. It is a chronic condition but care is lacking. Although I will say when I do see the doctors they are really nice, it is just getting to see them. Being on the Surveillance Programme I thought it would be timetable in for care.

I agree with you completely. I recently got back with my GP because I'm still having RUQ discomfort. The guy basically dismisses it as if he has better things to do. I mean I get it, he's a doctor with probably a hundred patients. We communicate through email basically. He's started me on a high strength anti-acid prescription as he's convinced my liver (even though I was 100% honest about my DECADE of daily alcohol abuse) is perfectly normal. I get the gist that the guy could really care less and I'm thinking about switching GPs. I'll run the bout of anti-acids and see what happens. Hopefully he's right. Don't give up. If your GP gives you the run-around, it's time to take your money elsewhere.

TT-2018
TT-2018 in reply to Yarkis

You are on a U.K. website, the NHS is free at the point of entry and free at the point of exit.

Perhaps your pain is caused by IBS due to the anxiety caused by the endless googling?

Beauport
Beauport in reply to TT-2018

That remark wasn't helpful.

Laura009
Laura009 in reply to Beauport

8 of us think it is 🤷🏻‍♀️

Cpink55
Cpink55 in reply to Laura009

You are extremely rude to people.. I have monitored this forum for a while having believed that I have issues as well, and to educate myself regarding this. I completely agree with Amethyst. Doctors have told me exactly the same thing and always brush off, yet I have heard so many people share similar symptoms and experiences that end up being caused by the issues they believe them to be. So similar to do many others suffering from this and many doctors so misinformed to such common experiences of those suffering. From what I understand you dont even have a liver condition, your husband did. Unless you've been through it personally (it's not something you can live vicariously through someone else) you should maybe not say anything at all. Let someone who has personally experienced this go over it with her. Not to mention, telling someone they should go to a therapist and then this recent remark? The comment that was made by TT 2018 was very unhelpful, and more likely to cause someone struggling with mental health (whether it's plain mental health issues or those rooted from physical ailments) causes a lot more harm than good.. not very compassionate the lot of you, that's for sure.

Laura009
Laura009 in reply to Cpink55

Please tell me how living with an alcoholic with obvious mental issues , with liver and kidney failure followed by a traumatic death doesn't give me experience ?? Actually l'm not interested in what you think... after having lived through that, anything you say is water off a ducks back to me. Bye bye

TT-2018
TT-2018 in reply to Cpink55

You are a new person on here and you have hit the nail on the head when you talk about people struggling with mental health issues.

I suffered greatly from anxiety when I spent 19 months on a transplant waiting list as a priority patient with end stage, decompensated cirrhosis. My transplant came just in time to save my life. The doctors treated me with the utmost professionalism, compassion and understanding.

So please accept that some people suffer from anxiety and therapy would be more useful than taking up valuable resources, especially at this time when the doctors are under an incredible strain.

Laura009
Laura009 in reply to Cpink55

Oh l will just mention, not only did amethysts doctor say she would do well to see a therapist, she said her own Father had told her the same thing. So do your monitoring a little more thoroughly before jumping on people who do actually offer alot of help, advice and support to those who are in desperate need of it.

Amethyst91
Amethyst91 in reply to TT-2018

Ive suffered from IBS for 7 years. I know the difference and my body, thank you.

Laura009
Laura009 in reply to Amethyst91

Tt's comment was to yarkis

Yarkis
Yarkis in reply to TT-2018

Free? I'm sure your taxpayers would disagree. You may be right though and I hope you are. I know it's a UK website and I'll be honest, I don't know much about the UK health system. Just trying to give back as the site helped me though a very difficult time. I appreciate everyone here and enjoy the community as it's normally a very sincere place. People just looking out for one another; Which is all I was trying to do.

TT-2018
TT-2018 in reply to Yarkis

So don’t come here and set yourself up as a expert on the subject and dismiss our health system. Without medical research, the dedication and hard work of the doctors, I wouldn’t be alive and answering you.

The vast majority of people here have been very well treated and find that establishing a symbiotic relationship between themselves and the people who look after them, is by far the best way to improve their health. Dr Google is a sewer of misinformation and can be dangerous.

Yarkis
Yarkis in reply to TT-2018

I didn't mean to offend you or anyone else. I never said anything against the UK health care system. I am no expert, and I wasn't trying to come off as one. I was simply stating the situation I am personally having in the USA if you would have cared to ask. I'm glad you're doing well and had a great team to help you though. Also I completely agree about the Dr. Google thing. I only reference cited medical studies which the vast majority of are done in and funded by the UK. I didn't reference any here. I'm not sure why you're coming at me sideways but again, sorry if I offended you.

The problem is many fold at the moment. Firstly, many patients self diagnose using Google but should only use the BLT as a reputable source. Google gives misleading information.

Next, they are not dismissing the pain, it is not diagnostic. As already said, the capsule around the liver gets stretched but as the liver has no nerves, it has no pain receptors, so technically you cannot feel pain in the liver. They are speaking scientifically. Many patients feel pain in this area, but it is from the capsule or the swelling of organs pressing on each other.

Lastly, it is extremely difficult to get the same level of care at the moment, due to the fact that Covid has taken over many of the hospital services. I am speaking from experience. Before the pandemic, things ran smoothly. Now, doctors are seconded elsewhere, staff are self- isolating or sick & things are in turmoil.

As for portal vein flow, it is a rough guide. It is not that easy to measure accurately & again is not diagnostic. Symptoms may start the ball rolling with tests, but symptoms are not diagnostic since so many of them can indicate a wide range of things.

As patients we can add 2 + 2= 4, but really we have got it wrong. Google will lead you astray. Better to trust the docs as they know what to look for.

Hope the biopsy goes well. Good luck.

I trust them in the long run but I do wish instead of just saying it’s not symptom they would explain it. Like I completely understand it’s the capsule pain and I want them to recognize that it’s hurting for a reason and help me figure out the reason and how to manage it. All i want is more detailed explanations and advice on how to to help especially when I diet is the only thing they throw at me and my diet has been excellent for 7 months now so the diet is t helping me, what’s next?

I honestly don't know what to say. I really don't know what you are looking for as an answer. Looking at your recent posts, you seem to have several things going on. You may feel like 7 months is a long time to fix your diet, but you have to remember how long it took of not having a good diet is probably more than 7 months. Who has advised you on diet? I thought my diet was good, but a recent chat with a dietician made me realise for my current condition I am not getting enough protein, so I have changed it accordingly. I do wish you well, but I'm not sure what it is that any of us can say that will put your mind at rest. I strongly advise a chat with the helpline as they may be able to guide you through your many questions.

As for detailed explanations, you won't get them. This is not a personal thing, but a need to know and time issue. I have learnt these things over many years of attending clinics. They are not being difficult, but are under pressure to see many people.

Good luck :)

Well Ive told every dr about what I eat and all they say is “sounds good to me”. I guess when they just shrug it off it’s very annoying. As I said it was more of a vent thing. I know it’s not their life and bottom line is they only care about my money but it sucks knowing that about health care.

Laura009
Laura009 in reply to Amethyst91

I think you need to take this up with the powers that be in the US. The system of health care here in the UK is far superior and we can't relate or offer any opinion on your own personal treatment.

Amethyst91
Amethyst91 in reply to Laura009

Honestly the lack of support in the US is quite sad. Anytime I look for anything with actual information or support it’s in the UK. You guys are lucky over there.

Laura009
Laura009 in reply to Amethyst91

Yup 🇬🇧🇬🇧

Laura009
Laura009 in reply to Amethyst91

If you are maintaining a healthy lifestyle your liver will gradually be healing, hence the doctors response .. sounds good.... There is nothing else they can do for you unless any symptoms you may have take a dramatic turn for the worse. It is up to you to take care and responsibility for your physical and mental health and well being. Living in the states should be encouragement enough to look after yourself. I wouldn't be wanting much contact with the docs over there, not because l doubt their capeability, l just wouldn't want to be paying the charges.

I had the opposite. I went to my GP for a cholesterol check and thinking I was amaemic and instead was sent for many tests over the next week before being given a diagnosis. It took some time for them to convince me I had advanced liver disease.

Laura009
Laura009 in reply to hells456

How are you doing ?

I'm doing well thank you. My medicine has brought my levels down to an acceptable range for PBC. The scarring can't be reversed but it should slow down the progression, hopefully long enough for my youngest (13) to be finished with his education.

Laura009
Laura009 in reply to hells456

All the best hells L xx

Firstly, for the rude remarks made toward you, no one on here has the right to do that! You seem very sincere and like any level headed individual, all you are looking for is answers, but at second best, understanding. This will not be turned into a competition on who has the best healthcare system. Amethyst, I do hope you are doing okay at the moment.

The very least that Doctors should supply us with is answers to our descriptions of what is troubling us. If they dismiss our worries they are neglecting their duty of care.

Regardless of comments, we do not have an infallible healthcare system in this country, the tens of thousands of complaints to our Hospital Watchdog PALS confirms that that is the case.

So let me throw on my ten cents worth to this discussion and if anyone wants to disrespect me then please do it privately and show some courtesy.

Nobody has mentioned inflammation of the liver, we have mentioned swelling but not inflammation. No doubt you probably have this and that will cause you pain. It is hard to believe any doctor could not have correctly explained that to you or how to rectify inflammation of the liver.

Also, if your bile ducts are slightly inflamed then they will cause you pain as well. I totally believe you are feeling physical as well as emotional pain stemming from worrying.

But your worrying is natural so do you not think you need to see some therapist because you worry, every single person on this forum probably has worried too much at some point in their life especially when it comes to their health or the health of their loved ones.

Please be assured of the ongoing support of the majority of us on here and please please do not hesitate to keep us updated on how you are feeling and how your results go.

If you do not want to speak publicly at the moment you can always message anyone on here privately.

Please take care

DrKiljoy
DrKiljoy in reply to cammeag

Can I ask you a question, as a Jehovah Witness, do you accept blood transfusions?

cammeag
cammeag in reply to DrKiljoy

Wow, you got 5 ❤️ for asking that...can I ask, is that the first contribution you have made to the forum. Thanks for asking. Short answer: no. Reason: read bible Acts 15:28,29 please.

You are not dealing with some weird, turn up at midnight for the suicide pact, cult member my friend.

I have always sought quality medical care for my family and anyone close.

As a body, we accept alternative transfusions which do not carry the risk of AIDS, blood born disease, adverse reactions and compromised immunity, in all resulting in one death every 1-3000 transfusions. In fact many non witnesses now opt for bloodless surgery due to the dangers I listed and also because the rate of recovery is about 50% quicker.

Among other things we do not do......

Lie

Cheat on our wife.

Abuse our children.

Racism.

Neglect our elders.

Disrespect authority.

Cheat the taxman.

Steal. Etc etc etc.

But, just to finish. I shall tell you what I do accept.

Genuineness. Kindness. Good humour. Respect. Hard work. Helping ‘any’ in need. Love. Patience.

Every day I thank our creator Jehovah that I have the strength to come on here and try to help, encourage and build up wherever possible. I truly enjoy seeing the likes of Katy and Laura doing their best to impart understanding and warnings where necessary. The dedication of the nurses who volunteer to look after this community is also breathtaking.

So, Drkilljoy, I have answered your question, not for your sake, but for the others who loved you raising the point. Anymore personal questions will be reported. I don’t avoid them but we have a PM system at work on here when you ever want to ask me anything that has absolutely nothing to do with liver disease or issues like Amethyst raised. After all, this is meant to be her thread. Please stay well.

DrKiljoy
DrKiljoy in reply to cammeag

Thanks for clearing up your approach to medical care, and no, it’s not my first time of replying. Not everyone shares your beliefs and they are not part of mainstream thinking in the U.K.

For myself, I am a secular humanist who has had a large amount of blood products, without which, I probably would not be alive today and be able to reply back.

In the interest of balance, I don’t read the bible but I do look at the media and try to reach a balanced view.

theguardian.com/commentisfr...

Please go ahead and report this reply.

It demonstrates your approach to censorship.

TT-2018
TT-2018 in reply to cammeag

An artificial blood transfusion is significantly more expensive than a normal one and therefore an additional cost to the NHS. There are also some indications that there are drawbacks, such as the ability to oxygenate less.

Trust1
Trust1Administrator in reply to DrKiljoy

Please do not comment on member's religious preferences.

Trust1
Trust1Administrator

All members- Closing this post due to member conflict and off topic content. Please do keep to LIVER related comments thank you.

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