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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to wonder how much longer I have to suffer like this?

250 replies

BarelySurviving · 06/11/2021 22:57

For 9 months I've been experiencing crushing pains in my chest. It feels like my whole ribcage is being crushed, or like a steamroller is going over it. It's honestly worse than labour, and would happen a few times a week, usually waking me up in my sleep. It was initially misdiagnosed as a blood clot, then the doctors tried to fob me off by claiming it might just be heartburn, then I was told it was just my body adjusting after pregnancy and childbirth, then it was said to possibly be caused by me straining by carrying a baby all the time. And just been having blood test after blood test for months with no answers. It started just after I gave birth and I've spent the entirety of my mat leave just barely surviving on cocodamol.

Well, I had an ultrasound scan over a week ago. Never got the results and had been chasing doctors for them to no avail, told by GP it's only routine not urgent and told to make appointment for mid December. My health has rapidly declined recently and the pain is now near-constant, for example I will have crushing pain in chest for 20 hours straight then I will have discomfort/tightness for a couple hours, then back to crushing pain. I have been vomiting uncontrollably (sometimes struggle to make it to toilet and vomit on the floor), I'm going jaundiced, my wee is brown (and tissue looks neon orange when I wipe myself). I went to A&E on Friday at the end of my tether and the hospital staff were pissed off with me because they said it's not urgent as I've been dealing with this for 9 months already. But I can't cope with it any longer. I was then told that the previous scan showed I had a badly inflamed gallbladder and large gallstones. I was sent home with prescription for morphine and told that I will be referred for surgery.

I have no idea how much longer I have to wait. I'm not well at all now and feel like I'm barely functioning. I feel like I won't be able to work because of my pain and health. I searched online and I'm sure it said 49 weeks was the average wait for gallbladder removal at my hospital. How can I possibly suffer like this for another year? It seems so inhumane.

Does anyone else have experience of going through similar? I just feel at a loss and not taken seriously about my pain.

OP posts:
Viviennemary · 06/11/2021 23:44

They need to up their game instead of leaving you to suffer like this. In the meantime go on a very very low fat diet which should lessen the severity of attacks. No eggs or cheese. They were the worst triggers for me. And they should do a liver function test.

SpringCrocus · 06/11/2021 23:44

Gallbladder, jaundice.

Original poster
BarelySurviving · 06/11/2021 23:44

@StaplesCorner
How do I know if I have full and formal diagnosis and what would that entail? And I know that the GPs/hospital throughout this have been absolutely useless. At first there was a bit of panic because they thought I had a blood clot, when this was confirmed to not be the case I was made to feel dramatic and like a hysterical woman for the past 9 months, it genuinely feels like I've been gaslit by the medical professionals involved.

OP posts:
Original poster
BarelySurviving · 06/11/2021 23:47

The first liver function test I had was over 9 months ago and it was not good, and I had one on every blood test since but they kept making out that my previous pregnancy and childbirth might be messing up the blood tests, and it was only last week I had scan on my liver, after 9 months of consistently abnormal bloods.

OP posts:
SecretDoor · 06/11/2021 23:49

www.nhs.uk/conditions/gallstones/

EsmeraldaFudge · 06/11/2021 23:51

I didn't actually realise I had gallbladder issues at all. I had occasional "indigestion" that would keep me awake at night ( now I realise it was my gallbladder).
I was admitted to hospital last month via A&E with fever and staring to slowly resemble Marge Simpson in colour. I had an ultrasound scan and this showed that my gallbladder was completely infected and I had 4 stones. I had emergency surgery the next day. I was so ill I thought I was dying.

addler · 06/11/2021 23:53

Buy some buscopan over the counter and take the recommended dose for cramps, not IBS- it's the exact same product and ingredients just a stronger dose that means the box labelled cramps is prescription only.

It's the only thing that helps ease it until the stone passes.

Original poster
BarelySurviving · 06/11/2021 23:58

@EsmeraldaFudge oh how dreadful, I'm so sorry you went through that, but I'm glad you got it sorted out in the end. I hope the recovery has been well and that you are feeling much better now!

OP posts:
itswinterfall · 06/11/2021 23:58

Phone go and tell them that it is urgent and if they don't see you that you will go to a&e. You need chest X-ray. Bloods, ecg.

itswinterfall · 06/11/2021 23:58

Gp not go

CherryBlossomAutumn · 07/11/2021 00:00

I also heard that giving your body a complete rest from fat, for a few days. Even if it means not eating much at all, but that will ease off the pressure on the gallbladder.

Also with others, go back to your GP and insist that you have some kind of idea of what it is. Go back to A & E also if you want. You can’t be expected to be on morphine for weeks.

Do bear in mind that at the moment hospitals are totally overwhelmed with the build up of Covid and seasonal viruses. Be quite careful you don’t pick up COVID on top of this, but do be prepared to really forcefully make your case. You’ve suffered for months and so you are not ‘jumping a queue’ you deserve to be very high up the queue!

MattDamon · 07/11/2021 00:01

Do you have the NHS app? You can log in and view your medical records there. It's not the full record but it may have more info than what you've been given.

Original poster
BarelySurviving · 07/11/2021 00:03

@itswinterfall
I've had lots of blood tests over the past 9 months, and after every one the doctor would get me to wait a period (like 4 weeks) and then redo the blood tests to see if they improve. With no real action until the ultrasound recently. But when they initially suspected I had blood clots, I had chest x-ray, CT scan on my chest, and I had ECG. I also had ECG at A&E last night, all fine.

OP posts:
CharlotteRose90 · 07/11/2021 00:05

Omg you sound like me when I had all those symptoms and it’s down to gallstones. especially the jaundice and the bright orange wee. I was horrendous when I had it. If I have to be rude fuck what the hospital said please please keep going back to a&e . I got diagnosed in the April and told it could be up to 12 months before my operation. Well I had weekly, sometimes daily attacks that bad I couldn’t cope and each time I went to a&e . I got my operation the beginning of June. Please do not wait. Go there and there will take it out. Don’t be fobbed off like most people are.

Original poster
BarelySurviving · 07/11/2021 00:06

I was made to feel crap by two nurses, receptionist and doctor for going to A&E last night Sad in the end doctor was like, well I know what's wrong with you as I have scan results right here so I might as well refer you to surgery now you're here, but you shouldn't come to A&E as your GP should be dealing with this.

OP posts:
Original poster
BarelySurviving · 07/11/2021 00:09

@CharlotteRose90 I have this pain daily, almost constant now. I don't drive and have to pay for taxi to go to A&E which is a lot of money for me, I felt guilty even making the trip last night and spending the money on that. I can't afford to keep going there all the time Sad I hope you're feeling much better now since your surgery

OP posts:
SpookyPumpkinPants · 07/11/2021 00:09

@BarelySurviving

That's absolutely disgraceful treatment, by all concerned!

Do you have anyone (partner/parent/friend) who can advocate for you?

No matter how capesble you normally are, sometimes when you're realky unwell you need someone to 'not take this crap' on your behalf.

We are telling you quite loudly that you are being treat badly and NEED medical help!!

I'd go back to A&E and be more forceful

Best of luck

HazelBite · 07/11/2021 00:10

OP I survive on a completely fat free diet to be painfree (God knows when I will get a referral) Going fat free and dairy free has saved my sanity, and I've lost loads of weight

CharlotteRose90 · 07/11/2021 00:11

[quote BarelySurviving]@CharlotteRose90 I have this pain daily, almost constant now. I don't drive and have to pay for taxi to go to A&E which is a lot of money for me, I felt guilty even making the trip last night and spending the money on that. I can't afford to keep going there all the time Sad I hope you're feeling much better now since your surgery[/quote]
Aww that’s not good. You shouldn’t be made to feel like this. No when I had mine I did drive but most of the time I had that bad of a pain I had to get an ambulance out. I was on constant morphine. It’s horrific that the nhs will let people wait up to a year for the operation on it . No wonder people get addicted . Sadly I had my operation in 2018 and I’ve had a few gallstone episodes since. Who knew you can get stones without having a gallbladder, I’m a lot better though.

123feraverto · 07/11/2021 00:12

As soon as I read your symptoms I wa thinking gallstones!
I had mine out a month ago - also misdiagnosed when I was pregnant.

Mine started in January I was 19 weeks pregnant , went to a&e twice , went to maternity twice , discussed with my midwife . Not one person I saw suggested gallstones - pain episodes were infrequent then.

Then in July baby was 5 weeks old and the pain stayed consistently for a week
, so googled and found gallstones spoke to my gp who agreed and sent off for an ultrasound
got a cancellation ultrasound beginning of august and got it taken out in October

It was effecting my liver function which hurried mine I think , I'm also breastfeeding so pain relief options were limited so I think that worked in my favour too
Having follow up bloods next week to check the liver function has returned to normal

CharlotteRose90 · 07/11/2021 00:13

[quote BarelySurviving]@CharlotteRose90 I have this pain daily, almost constant now. I don't drive and have to pay for taxi to go to A&E which is a lot of money for me, I felt guilty even making the trip last night and spending the money on that. I can't afford to keep going there all the time Sad I hope you're feeling much better now since your surgery[/quote]
Oh and I forgot to add that the next time you go there if they mention the GP then you need to say that the Gps aren’t doing anything. All my care was arranged by a&e and surgeons my Gp didn’t know till I gave my discharge summary.

Original poster
BarelySurviving · 07/11/2021 00:15

Thank you so much everyone, seems like a lot of people have had similar experiences and all of you have been very supportive and been giving me advice. I started a new job end of September but only worked 1 and a half day, got sent home on the second day as I was really unwell. Was off for a month pretty much. I returned to work last weekend and worked three shifts, really struggled, and it's a physical job. And since then I've got even worse. How do people cope with this while working?

OP posts:
Whywonttheyletmeusemyusername · 07/11/2021 00:16

Friend of mine has had exact same symptoms, and as PP have said, I would also agree with gallstones. Speak to PALS....and keep pestering. Covid isn't the only illness in the world and its diabolical that you've been left in this state

fsdre · 07/11/2021 00:18

OP I can't believe you have been treated like this. I have almost exactly the same issue, mine started at the end of August. I went to A&E due to vomiting and uncontrollable itching. They did blood tests and my liver results were bad. In less than a week I had had an ultrasound, then a MRI. I was jaundice as well which I didn't realise in A&E but came on quickly afterwards. I had a gallbladder full of stones and a blockage in my bile duct. I was hospitalised for 6 days where they did two procedures to remove the blockage and that helped with some of the worst symptoms. I was then referred for surgery, which should have been within 6 weeks but has been slightly delayed because of covid. It's now scheduled for a few weeks time. I don't understand why you aren't being treated. Aren't they concerned about the jaundice? Is it getting worse? They were very concerned with me as every time they did a blood test my levels were raising and they said it could cause permanent damage to my liver if it wasn't sorted quickly.

Redsquirrel5 · 07/11/2021 00:20

Sorry that is awful. The pain is horrendous. Mine was the size of a duck egg and some small ones too. Diagnosed in pregnancy and operated on about ten months later. They took me to theatre and I was there five hours. Don’t want to frighten you but I had septicaemia I ended up in for five days and DH had to bring DD in because I was breast feeding her at night and morning. Get back to your GP and make a fuss. Agree very bland diet no curry, chilli anything like that, no fried food, no onions.
I found yoghurt helped just plain with some honey in it.