Right Side Pain - please share your ex... - British Liver Trust

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Right Side Pain - please share your experiences

jdk1138 profile image
30 Replies

Hi there. I wanted to start talking as I'm petrified of this liver pain. I drank for 20 years, 10-15 units a day. Right side pain - more like discomfort - but definitely there and all the time. Gave up couple years ago, but I drank at the start of lockdown for a few days - like most people - and had pain the next day which stayed for 6-8 weeks then went away completely. Then no booze and no pain but I drank at Xmas and had pain the next day which stayed for 6-8 weeks then went away completely again.

Then about 2.5 months ago the discomfort started again and I don't know why. I'm concerned to the point of obsessing over it - I've always been a bit of an anxious type. My diet has always been quite bad and I generally only sleep 5/6 hours at a time.

Discomfort under the right rib cage that is worse when I've slumped down. It feels like an inflammed liver.

I've recently had bloods done and they are all fine. That was private through Thriva.

I have a doctors appointment next week to get some tests done. However I'm really concerned so wanted to get as much info from you guys about your experience with this kind of pain.

1) How many times have you had this pain? How long each time did it take to go?

2) How debilitating is it for you?

3) How do you manage the mental drain this puts on you? Takes all my strength to get through the day. By the evening I find myself counting the minutes until bedtime watching random TV. Literally looking at my watch every 10 mins trying not to keep thinking about it, but it's very very hard. To say work/life is suffereing is a major understatement.

My biggest concern really is this is it - I've had a couple of bouts of liver pain that's got better and now i've got pain again that's lasted twice as long as the other times and no end in sight. If I roll the clock forward 6 months am I going to be in the same place - RUQ pain with more bad liver symptoms creeping in (I'm already concerned about my pot belly and what I think is a bit of neuropathy) as my health slides away or will my liver bounce back again?

Looking for other people to share. Thanks in advance from a very worried guy,

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jdk1138
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30 Replies
jdk1138 profile image
jdk1138

Reading other posts, there’s quite a community here. I feel so alone with this struggle that I might have to look for other local support groups. Something I should discuss with my Dr too I guess

Seoe profile image
Seoe in reply to jdk1138

I thought I replied already but can’t find it

I struggle with pain too

Had it constant for a year

Had 3 scans abs a ct scan

They say it’s not too bad mom doing everything I can to reduce the weight and I only have 5Ib to go so from there I do not know what I will do if it doesn’t go

I am truly so fed up with

Everyone thinks I’m putting it on

As it’s more uncomfortable and burning like than a muscle pain or broken bone

But it’s 24/7

I believe there must be more wrong 😑

jdk1138 profile image
jdk1138 in reply to Seoe

Hi Seoe - yes I started a new thread - I wanted to get as many opinions as possible.

What's your diagnosis? Bottom line is I'm trying to work out if the liver pain thing is something that, once it starts, you're lumped with it. If you have scarring and all that I guess. And how old are you? Thanks in advance for talking to me, I really appreciate you and everyone else who helps time.

I'm 48, quite slim except for a pot belly that - you know - might be ascites but don't think so as it's no bigger than it's been for the last 10 years.

I've had the pain come and go a couple of times but never this long. Feel like maybe something has pushed me over the edge, you know? In the past I'll drink and have pain for 6 weeks. This time it's 10+ weeks and no sign of stopping.

Guess I need to push for a referral for all the scans and see where we are. If the scans come back fine I guess I've just got to wait it out, but if the scans come back with fibrosis or worse cirrhosis, is this it? Is life going to be all about pain management?

I have tinnitus and that is probably why this all started. That came on 13 years ago and it took me around 4 years to get my life back together after that, so I understand the psychology of pain management and adjusting, but jesus that don't tell you about all this stuff when you're young!

Seoe profile image
Seoe

All they say is fatty liver and loose another 6-8Ib. 56 female only 5 ft 2 I feel something very wrong as can’t understand the pain

I call it pain but it’s more discomfort

Just eaten and you can literally feel the liver working the digestion.

I have a private scan on Monday so I will let you know

I’m praying that the liver hasn’t become enlarged or inflamed as no alcohol since Feb and a good weight loss and bloods have been the same all year but I’ll let you know .

Hi JDK

Your pain can be for many reasons. I noticed you mentioned neuropathy, which is a possible cause. My pain was because bad diet, poor routine and lack of exercise, which resulted in a gall bladder problem.

Stress and anxiety will definitely make it feel worse, and it is a vicious circle, we fixate on the pain, it stresses us out, and it feels worse, we google answers which cause anxiety and it makes us feel worse.

Breaking the circle is difficult but finding a way to first stop our minds from looking for the worst case scenario is a good step. Find something that distracts you, music, games or anything that will not let your mind loose.

Try to exercise a little more, eat better foods, and get a little more rest. The good point is that you will see the doctor soon.

Hope you get relief

Dave

Zukosmile07 profile image
Zukosmile07

Hi there We could really use some more information things like your weight and fluid buildup, does your liver feel swollen.

In my opinion you need some scan's doing because like what Dave said it could be so many things.

My right side pain is usually fluid or swollen liver. It then pushes on my diaphragm and hurts right under my ribs and sometimes causes me to be out of breath.

Gall stones creates pain as well but the only way is through having some scan's to determine the cause.

user2021a profile image
user2021a

I have cirrhosis in my liver and problems with the veins in my liver. The only time I have had pain in my liver is having a stent in it at the time of having it fitted which was done without anaesthetic and was only slightly uncomfortable. That pain was just under my ribs at the front. I have no pain otherwise. The pain you describe sounds more like your gall bladder or stomach issues but I’m not a doctor. Go and see your doctor and get proper blood tests done and describe your symptoms to them.

1) Never had it before this time, it has been there for four years so far, started as an occasional dull ache with occasional sharp pain if I twisted or exerted (originally diagnosed as a hernia!!), now ache is constantly there

2) I have M.E. as well a various other things so this on top of that is exhausting.

3)Mentally, I have tablets, also try not to obsess - which is difficult as I have had no other help from my consultant other than being told to lose weight! So you have to google it to try and find out more and google becomes the doctor, lol.

At the end of the day if you're eating right and exercising more you're headed in the right direction! Good luck with the doctorr appt!

jdk1138 profile image
jdk1138

Okay so 11 months, 4 years and user2021a has cirrhosis and no pain. This disease truly hits everyone in different ways.

Thanks everyone. I’m 13.5 stone 6’ 2” 48 years old so relatively slim. I’ve got a pot belly that I though might be ascites but I think it might be too small. My pain feels like a swollen liver. It’s right side just under the bottom of my rib cage but sometimes it’s a sharp twinge in my kidney area sometime a bit lower on my right. I think it depends on how I move around - it’s worse when I’m sat down - watching a movie or gaming is getting very uncomfortable - not so bad when I’m walking around.

JackyAM what’s your diagnosis?

Smegmer profile image
Smegmer in reply to jdk1138

Are you male?

jdk1138 profile image
jdk1138 in reply to Smegmer

Yes

Smegmer profile image
Smegmer in reply to jdk1138

Liver pain is fairly common in ex drinkers and sometimes they never find a solution. Some have had success with it being a gall bladder issue in the end. Also I think some confuse colon pain with Liver pain.

The Liver doesn't have nerves so it doesn't know pain, the capsule around it does though, Glisson's Capsule. Your drinking is pretty hefty at 70-105 units a week. You will need some imaging tests to find out more.

jdk1138 profile image
jdk1138 in reply to Smegmer

Was at that level, but hasn’t been for years. I’m not stupid though I appreciate when the damage is done the damage is done.

And that’s the thing. I can’t imagine having this pain forever. And my mind is running rings around the fact that this might be it - pain now and a slow spiral downhill.

I guess I need to push for tests and then go on from there. I’m disappointed. Nobody has volunteered something like “I had fibrosis that I’m managing daily and the pain went away after 6 months of really watching my diet.” I guess I was looking for someone to say that had a similar experience and it got better, but then again maybe you don’t hang around liver forums if that’s the case!

Thanks for your support everyone

Smegmer profile image
Smegmer in reply to jdk1138

Your pain could be any number of things. I doubt you could be walking around with a "bit" of Ascites and not have other issues occurring or your blood out of whack. Ascites is an end stage Cirrhosis symptom or Severe Acute Hepatitis. You don't even know if you have any Fibrosis yet, in theory if the Liver can process 1 unit of alcohol an hour you should be able to handle 10 units in a 24 hour period.

in reply to Smegmer

Interesting you say pain is common in drinkers - I have pain and am an ex-drinker (used to go on binges) Though my diagnosis was NAFLD. 🤷‍♀️

jdk1138 profile image
jdk1138 in reply to

When was your diagnosis Jacky? How long have you been living with this? How do you manage the constant discomfort? Do you have loved ones to help you?

in reply to jdk1138

Hi, sorry missed this, I have had the pain, gradually getting worse, since about 4 years ago - I was originally diagnosed with a hernia. My Husband is amazing, he looks after me and rarely complains. My pain is definitely less bad on a day where I have stuck to eating plants and fruit. If I have a cheat day it tells me not to!!!! Also I try not to over exert myself as that's when I get the real bad pain, a sort of grippy stabby pain (which is what I went to the dr for initially and probably why she thought "ooh good this ones easy it must be a hernia")

jdk1138 profile image
jdk1138 in reply to

You’re a very strong woman Jackie. Living with pain management is something that I wasn’t expecting to have to deal with. Do you get very low sometimes? Unluckily I’m separated and my wife has long covid. We don’t get on much any more ☹️ Make the whole experience quite a lonely one

What do you think the future holds? Are you resigned to managing your symptoms or do you think there is a light at the end of the tunnel?

jdk1138 profile image
jdk1138 in reply to jdk1138

Have you had a transplant assessment?

in reply to jdk1138

I haven't even seen the consultant, only spoken on the phone.

I think if I can keep this up with the diet and try to do more movement/exercise I should eventually get this sorted. It will also help a lot of other things that I have like, the high cholesterol and high BP. I also think the asthma diagnosis might have been just a side effect of the liver disease as inhalers don't do much TBH.

I do get low sometimes. I have struggled with depression for a few years now and been on and off medication for it - just recently started back on it. I can be quite introverted and the lockdowns didn't really affect me - other than not being able to see family, especially as my sixth grandchild was born when we weren't allowed contact.

I have always been ok at coping with things, I've put a positive spin on break-ups and losing a leg didn't affect me too much (though maybe that's why I developed depression) they say if you don't deal with things they come out eventually anyway.

Anyway, I've rambled on, you'll know my life story soon, lol

😆

jdk1138 profile image
jdk1138 in reply to

No problem. Sounds like you been to hell and back with your health and losing a leg.

Im yet to hear anyone say they’ve had right side pain and it’s got better on its own though.

in reply to jdk1138

I've no idea if the pain will go, I've heard conflicting stories on that, but the liver should get better - ie improve on the fibrosis and inflamation.

in reply to jdk1138

Fibrosis. Oh and I'm female, 5' 2" and 14 stone 10 (having lost a stone already)

Tenngirl profile image
Tenngirl in reply to

You have NAFLD with fibrosis?

in reply to Tenngirl

Yup apparently, it's stage 3 NAFLD.

Tenngirl profile image
Tenngirl in reply to

Were you diagnosed stage 3 through a Fibroscan?

in reply to Tenngirl

Yes.

Amethyst91 profile image
Amethyst91

I have the pains as well. I’m 30 yr old female, 5’9”, 130lbs, BMI 19. My pain started 5/2020 after a really bad binge and it was originally on the left shoulder blade area. That pain lasted for a week and I got bloods drawn which were normal besides my bilirubin being 2.4 ( my bilirubin is always 1.2-1.8), so the dr ordered a ultrasound. My ultrasound was around 3 weeks after the binge and I was not drinking at all since and my results came up as mild fatty infiltration and everything else was normal. About two weeks after the binge my URQ pain started and it’s usually dull and wraps around my whole right rib area front to back, also my right shoulder and right side of neck when it’s really bad. This pains was constant for months and it even got so bad it reached my right hip and thigh for a while. Of course I freaked out and pushed for all the scans and my MRI showed 20.5cm liver with a 1.5cm portal vein which is enlarged. My drs showed me the images and told me my liver is enlarged because it has an extra tongue like piece called a Riedel’s lobe and that it’s a normal variant and not truly enlarged because it is not displacing any of my other organs. I was able to get a biopsy due to my mom having liver disease and my biopsy only revealed mild bile pigment with no damage, fat, or inflammation. My drs did a genetic test for Gilbert’s syndrome which was positive so they told me my bilirubin elevation and mild bile pigment are due to that which is a benign condition. I just went for my follow up last week and got a fibroscan which read 3.2 kpa and 214 cap which indicates no scarring or fat in the liver. I still have this URQ pain it’s so bad right now that exhaling when I talk hurts. All my drs have assured me my liver is fine and based on my tests it seems great , but my symptoms continue and I also have red palms and pale stools with some bile reflux. My HIDA scan showed a hyperkinetic gallbladder with 96% ejection fraction and some sludge, but they tell me my symptoms do not go with gallbladder symptoms and there’s nothing to do there. To this day I’m still terrified about my liver and don’t know what to do about any of it.

mayk19 profile image
mayk19 in reply to Amethyst91

Hi there, sorry read of your pain... not sure if you are still on this board? but i have almost the same story as you - now almost three years of same pain, no better, no worse - however - i can do physio and make it go away.. in the end i've been told Liver fine and the cause was Thoracic radiculopathy... two of my vertebra were deformed during child hood - now im 50 they are rubbing together and pain materialises in right side, down to thigh / stomach even. maybe worth a back scan that found mine... had every other test known as well Fibroscan etc which all came back fine.

daveyboixx profile image
daveyboixx

I too am in the same boat, 31 y/o male struggling with RUQ pain since early 2020, I binged alot in my late 20's and when it originally started my ALT and GGT were elevated. This scared me and I stopped drinking for 9 months. The pain continued, consisting of RUQ, right shoulder, base of right foot, mild itchiness and just feeling pretty shit! I've had numerous scans including CT, MRI, MRCP, ultrasound and fibroscan but everything has come back clear, my bloods are now more or less normal but the pain persists, I've also tried drinking a few occasions and I now cant have more than a few beers without being in loads of pain and itchiness the day after. I also work shift and I find if I've had a few rough days or nights sleep and I'm feeling super tired, the symptoms worsen. I just don't know where to go from here it's so frustrating!

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