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

[BarelySurviving]

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.

You need to be firm with him to get to the bottom of the scan business.

Either they were wrong previously and this is not a gb issue, or this doctor is mistaken, you need to know tonight.

Gallbladder. Jaundice is a bad sign. Badger your GP on this

You poor thing. You're not going mad, their processes are cleary messed up - losing blood samples???

Really sorry that you've run into another brick wall with this last doctor. I' m crossing my fingers that a better one comes along right speedily.

So this doctor claimed there was no bilirubin in my blood, claimed he'd had the blood results. It's not jaundice, something else is causing it. Not a gallbladder issue, my gallbladder is normal, it's musculoskeletal. I was insistent this is simply not true, and off he went. Then a surgeon walks in and tells me they've just had my blood results and very concerned, very high levels of bilirubin, that I do have jaundice, caused by a gallstone obstruction. He said the crushing pain I've been feeling for months is my gallbladder squeezing, which apparently is meant to painful and can cause chest pain. Said they were keeping me in and having MRI tomorrow. I told him about what other doctor said and he was just as confused as me, but told me to ignore all of that. I am fuming and definitely complaining to PALS, because what the actual fuck was all that about? How can that even happen?

I've only just come across this thread now and oh my goodness you poor thing. I'd say forget about the Dr who fobbed you off for now (but defo speak to pals later). You've obviously been labeled as a drug-seeker/time waster/hypochondriac somewhere along the line and every subsequent Dr has been distracted by that. It's not good enough care (quite frankly it's negligent), but can go on the back burner while you focus on this hospital stay and this MRI and getting to the bottom of what's going on. Hoping and praying this is 'it' and the ball will get rolling for sorting you out

I've just come across this thread too OP. What a terrible time you have been having and I'm sending a hand hold for you and praying you get this all sorted ASAP.

I would definitely be complaining.

I am so sorry for what you're going through. The way you have been treated is disgraceful and I hope they have finally taken this seriously. You will have a very long pals list to compile but it's absolutely warranted!

This is really worrying. I wonder how many other people are being fobbed off like you? So glad you stood your ground and are having further investigations. WTF was that first doctor on? How could he have got thing so wrong?

This just shows the state the NHS is in. My friend lives in France and an ultrasound for something else (thankfully negative) showed up one large gallstone. My friend has known about this since 2006 but the stone has never made its presence felt. Her Dr is insisting that she has her gallbladder removed as " It is better to prevent problems before they occur".
My sister in UK had to wait ages and it was only when she collapsed in screaming agony that she was rushed in for surgery. The consultant told her that her gallbladder was virtually shredded by the 15 stones.
Please don't let Drs fob you off. It could lead to pancreatitis which, in turn, can lead to to sepsis...My friend was told this by her Dr. It is unacceptable that you are being left in such pain. Good luck.

Missed that you are having MRI etc. Thank goodness you are being taken seriously at last.

Thank goodness you are being taken seriously now. My daunt had her symptoms minimised by her GP for months and months and months, she had stage 4 cancer and died 2 months after her diagnosis. You are not going mad, you are being gaslighted by medical professionals. Keep pushing for a full investigation and definitely involve PALS today, it takes a while for it to filter through to the medical staff so you need it flagging now. Use the time you have to fully document everything and send it in. I hope you feel better soon.

NHS waits for non cancer ‘general surgery’ reviews and operations are horrric at the moment. They only have the capacity to get the cancer work done ans many are non meeting 2 week wait targets. A colorectal friend of mine feels desperate about this and too me there are 1200 referrals with things like hernias and piles waiting to be seen . I know there is a mountain of gallbladder work waiting too. One hospital I worked at had a years wait 6 months ago. A friend was in the place OP is and ended up having to go private because she couldn’t wait a year .

If you have jaundice or orange wee though it means you are blocking the bile duct and need urgent review and treatment.

Great - glad to see you are getting the treatment you need now. An MRCP scan is an MRI that looks at the glass ladder and ducts. If there is a stone in the duct you will need the stone removing with an endoscopy ( camera into the gullet) before they can safely take out the gall bladder. This is usually a keyhole surgery operation . ( former GB surgeon 🤫)

Oh thank goodness for that final surgeon. I’m absolutely shocked by your treatment by others. The previous doctor… will your DH or a friend help you to make sure you get a complaint written down?

Try and keep a note of that surgeons name. Good luck

This is very bad. The OP needs to complain. Wtf is the point of going into medicine if you're prepared to gaslight your patients and lie about blood results? This could cost someone their life. I've encountered minimising behaviour by doctors many times and I really think it's time this was addressed.

Unbelievable. You're in the right place now, though.

gall bladder pain is awful I ended up passing out at my granddaughter's christening with it I am so sorry you are suffering like this mine ended up infected so had to have major surgery I hope someone will listen to you soon xx

I feel so angry reading this op. What a terrible situation you find yourself in.

I was referred for a colonoscopy in August. Was non urgent despite pain because there was no blood detected in stool sample. But I was shocked to receive an appointment within weeks and have already had it done and took a late Sunday afternoon appointment. I really hope this can be the case for you.

Could you speak to your doctor/surgeon's secretary at the hospital emphasising how poorly you are? It might not have any impact but any route is worth trying.

Fwiw, one of the nurses dealing with me said she felt GP surgeries had let people down very badly during the pandemic and that a lot had fallen to A and E to pick up refusal to see patients and the bad feeling appears to have impacted on people such as yourself. I cannot believe you have been left to suffer like this.

@BarelySurviving

So this doctor claimed there was no bilirubin in my blood, claimed he'd had the blood results. It's not jaundice, something else is causing it. Not a gallbladder issue, my gallbladder is normal, it's musculoskeletal. I was insistent this is simply not true, and off he went. Then a surgeon walks in and tells me they've just had my blood results and very concerned, very high levels of bilirubin, that I do have jaundice, caused by a gallstone obstruction. He said the crushing pain I've been feeling for months is my gallbladder squeezing, which apparently is meant to painful and can cause chest pain. Said they were keeping me in and having MRI tomorrow. I told him about what other doctor said and he was just as confused as me, but told me to ignore all of that. I am fuming and definitely complaining to PALS, because what the actual fuck was all that about? How can that even happen?

I'm so glad you you the right outcome in the end. Have you got the incorrect doctors name? 100% complain and use this surgeon to back you up. So so bad. Terrible. Poor you OP

Bloody hell Op. I work in the NHS and think that you absolutely should put in a complaint about your whole experience. It's awful.

I wonder if the doctor who told you there was nothing in your blood had someone else’s blood test in front of him? I can’t think how else he could of got it so wrong. Surely it’s either that or he’s incompetent or lying??

good luck op. I really hope things get better for you xx

Thank you so much everyone. I'm so confused how this other doctor could get things so so wrong, it doesn't seem like a simple mix-up with someone else's blood test in front of him, because he was claiming to have read all my medical files and seen all my previous blood tests and my scan etc, and apparently there was never anything wrong with my bloods over the past year and my scan was normal apparently.
Whether it is a mix-up or not, it's just not on and sent me into a bit of a panic last night even doubting my own sanity as nothing was adding up.

Sounds like it’s someone else’s results.