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.

@BarelySurviving

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.

I honestly don’t know which would be worse. Telling you all about someone’s medical history thinking it’s yours or being so incompetent he can’t interpret the tests on your medical records. Definitely get his name and information if you can it needs investigating.

@TheBareNecessitiesOfLife

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 would ask to see copies of your medical notes - in case someone has put you down as a time waster.

How are you OP? Did you have the MRI?

@ThePoetsWife are they allowed to put you down as a time waster in notes? Is there certain terminology they use to allude to a time waster/hypochrondriac/drug seeker/liar which I should look out for?

I had the MRI, and they are keeping me in until they can remove the gallstone which they can't do yet. I've been given IV antibiotics and being kept on drip for fluids. Not sure how long I will be in, and as much as I hate being in hospital, especially with my baby daughter at home, I'm sure it will all be worth it in the end.

I’m just so relieved you are where you need to be. I’m glad I kept on at you. (Sorry if it was annoying).

Use the time waiting to compose a letter of complaint to your GP.

This thread was giving me palpitations!

Gall bladder is the worst pain. Ime worse than childbirth. I remember the squeezing pain - it was as if I was being suffocated by a python.

I was fobbed off with indigestion pain at first; I think everyone is. I supppose there are a lot of GP visits by people with only mild symptoms - perhaps they really do only have indigestion - so they can’t identify those who are really in a bad way, whimpering in agony for hours.

@DottyHarmer
So sorry you've also been through the same thing, and that is how the pain feels for me as well. I still remember the first time it happened and I literally thought I was dying, I had never felt anything like it before. I agree it feels worse than labour, and that is how I've described it to medical professionals as well. But it's crazy how we can tell them that and they still tell us it's heartburn or indigestion. I mean I thought I had pretty severe heartburn when I was pregnant, but I didn't feel like I was dying and I managed perfectly fine as uncomfortable as it was

I am horrified by all of this and I admire your resilience so much.

When you are able to, you might consider telling your MP as well as PALS.

I hope you get the right treatment and get well soon.

The gallbladder particularly the sphincter of oddi can react badly to codeine. It can irritate it immensely exacerbating the pain. Try to avoid codeine-based analgesia. I get gallbladder pain and crushing chest pain every single time I have codeine (and my gallbladder was removed 27 years ago!)

[quote BarelySurviving]@DottyHarmer
So sorry you've also been through the same thing, and that is how the pain feels for me as well. I still remember the first time it happened and I literally thought I was dying, I had never felt anything like it before. I agree it feels worse than labour, and that is how I've described it to medical professionals as well. But it's crazy how we can tell them that and they still tell us it's heartburn or indigestion. I mean I thought I had pretty severe heartburn when I was pregnant, but I didn't feel like I was dying and I managed perfectly fine as uncomfortable as it was [/quote]
You only have to read the "worst pain you've ever been in" threads on here that pop up occasionally. A significant number of posters say gallbladder pain, and that it's worse than childbirth. And yet this is something they should cope with for months? It's so utterly unacceptable.

100% put a formal complaint in about your treatment over the past year.
I had gallstones last year and I agree, the pain is so much worse than childbirth. I wouldn't wish it on anyone.
Every time I had an attack, I went to hospital and had morphine and they removed my gallbladder after 2.5 months. By the time it was removed, I was borderline addicted to morphine.

Thank god they're taking you seriously now. That wanker dr shouldn't be practicing. He's genuinely putting people's lives at risk.
Thank goodness the surgeon was there. I hope they remove your gallbladder for you within the next couple of days.
Honestly, it's a life changer when it's out xx

If that doctor returns record what they say! Must be mixing up results! Or a shit doctor!

@BarelySurviving how are you doing?

I got through my first couple of attacks by taking some extra Morphine (I have it for other issues) but on the third occasion I was quite worried. I finally went to A & E and ended up being kept in for 4 days as I was jaundiced and had a temperature. They said to me, while I'm waiting for the surgery, that I must go to A & E again if I have pain and fever (as this could mean an infection) or am jaundiced at all.

I'm so angry to read how you were treated. I think you should speak to PALS and see what they advise. I know our hospitals are stretched but there's no excuse for treating people in the manner you were.

Hope you are feeling more comfortable now OP

I'm still waiting for the procedure to be done, sadly. As they only do it on certain days. They said yesterday I could go home today if I was well enough, then come back in for the procedure (ERCP). But to come back in if I am unwell or can't manage the pain. But I have just been told I have to stay in this weekend and they will try and have the procedure done as an inpatient because I am still far too jaundiced. Yesterday they mentioned I have to have my gallbladder removed otherwise it will keep happening, I asked when this will be done, they said within 2-3 months. Whole thing is like a waiting game right now, but at least I know stuff will be done.

I'm glad that you're finally getting some help.

I think best to stay in OP. I’m worried if they send you home it’ll just start all over again with the ‘oh, you’re fine’ nonsense. You’re clearly very unwell.

@BarelySurviving please know you are not going mad or losing your sanity. What you’re going through is real, I’ve been there except I was lucky and the medical staff involved with my care were excellent. You’ve suffered rotten luck from the people supposed to be helping you and once you’re fixed I’d most definitely be complaining to pals putting my particular emphasis on your gp.
I too suffered with gall stones, at first no one thought it possible as I was in my twenties and if anything closer to being underweight. The pain was absolutely excruciating, I also believed death was imminent and I hadn’t even heard of gall stones believe it or not. I suffered for months with these attacks, always worse in the evenings and night. I remember the particularly bad attack that had me writhing on the floor almost out of my mind, my dad called an ambulance, they took me to hospital. As soon as my results came in there was a flurry of activity, I didn’t even know who I was (turns out pancreatitis was knocking on my door). They patched me up and I joined a waiting list but I kept getting such severe infections I kept ending up in hospital. The relief when I finally had the damn thing removed, I remember the lovely head of ward telling me she had given birth three times and that was a walk in the park compared to gall stones, I thought she was just being kind until I had first traumatic back to back labour ending in forceps delivery and I can see she was telling the truth. I have read all your posts marvelling at what a strong person you are (massive understatement). I would say, given what’s gone on before with your case that although you’re desperate to get back to your baby, the best thing is to stay put and hope they do the procedure, it’s bloody life changing. I want to see the look on your gp’s face when she realises she’s monumentally fucked up. Please keep us posted if you’re able and sending much love to a brave stranger on MN.

Hope you are doing ok @BarelySurviving and the medics have now figured out a good plan

I don't understand why they are making you wait 2-3 months for the gallbladder removal 🤨

Your case sounds severe

They took mine out within 3 months of first diagnosis - I had liver issues and pain but I had no jaundice or white poo

It doesn't make sense , I'm annoyed for you

How are you doing op?

Thinking of you OP, I hope you've not been back because they've taken it out! Fingers crossed for you xx