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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:
Original poster
BarelySurviving · 06/11/2021 23:00

Also cocodamol is no longer effective at dealing with the pain. I have taken full dose of morphine today and although it helped I can still feel pain particularly in the centre of my ribcage/spine.

OP posts:
Cheeseandlobster · 06/11/2021 23:03

I have no suggestions other than perhaps going to pals or your local mp. I am furious on your behalf though. You sound really unwell. Please don't give up - I think you need to be seen properly as urgent

BeetyAxe · 06/11/2021 23:08

That’s ridiculous. I really don’t know what the hell you can do, except go back to a&e and demand to see a surgeon, tell them you can’t eat with the pain and you can’t pee or poo, that might make it more emergent?

EsmeraldaFudge · 06/11/2021 23:09

I've just had my gallbladder removed for very similar symptoms

PickAChew · 06/11/2021 23:12

Have you not been trialled with nitroglycerin spray just in case?

Zanina · 06/11/2021 23:16

I think you might have to make it sound more urgent (not that it isn't already) or maybe consider going abroad like Turkey and just getting it done. Piss take I know but the agony would be over. Xx

Maybe ask the gp how long they think the referral might take and whether they can refer you to the next nearby hospital/ put multiple referrals out.

Original poster
BarelySurviving · 06/11/2021 23:17

@EsmeraldaFudge How long did you have to wait for the surgery and how did you cope with the symptoms while waiting? Hope you don't mind me asking

OP posts:
Original poster
BarelySurviving · 06/11/2021 23:18

@PickAChew what is the nitroglycerin spray for?

OP posts:
FluffyBooBoo · 06/11/2021 23:19

That's dreadful. Really poor.

I was nowhere near in the state you are in when I had my gallbladder removed - and it didn't take nearly that long. Mind you that was pre-covid, but regardless, I'm shocked by how poorly you are being treated.

I hope someone has some great advice for you. That sounds urgent to me.

Plantpot75 · 06/11/2021 23:20

Hi OP, I had a very inflamed gallbladder, like you I felt increasingly unwell and when it came to having it removed it was so inflamed I ended up with open surgery rather than keyhole. While I was waiting I moved to a very low fat diet which did help a lot. I only ate things that were less than 5g fat per 100g. I think that was right but can check. I seem to remember that cocodamol made me worse but it was a few years ago so I might be remembering wrongly. I am so sorry you are going through this, it really is wrong. The concern is also that it can progress to pancreatis which is dangerous. If you are now jaundiced this could be a sign of pancreatis (I am not a doctor though!) Is it worth going back to your GP to see if the referral can be pushed through? I am sorry not much help, I know how awful it is.

Original poster
BarelySurviving · 06/11/2021 23:20

Fwiw, I can't afford to go private or abroad for surgery

OP posts:
Frlrlrubert · 06/11/2021 23:21

I'm also waiting for a referral for gallbladder surgery (I need to chase it actually). My pain is currently controlled fairly effectively by tramadol and paracetamol (codeine was doing sweet FA), though mine tended to be worse at night so yours sounds much worse to cope with.

I've basically been told that if the pain relief I have isn't effective to get a taxi (ambulance is a 7 hour wait here at the moment) to A&E.

How do you find out what the wait is where you are?

Kummerspeck · 06/11/2021 23:21

My friend was having episodes of severe pain which was diagnosed as gallbladder and the NHS list was too long so she paid to have it removed privately. It was done quickly and well in a private hospital

TeethingBabyHelp · 06/11/2021 23:22

@BarelySurviving I had very similar pain and went to a&e with it one night after my GP fobbing me off for months with antacid tablets. I was convinced I was dying and it turned out to be my gallbladder too

They got pain under control with morphine and tried to discharge me to wait for
Routine op appt. I asked to speak to surgeon and explained that I couldn't function with that level of pain or maintain the absence levels I was having at work and keep my job. I don't know whether I got a really lovely sympathetic Dr but they kept me in and did it the next day. It was such a relief.

DrNo007 · 06/11/2021 23:22

Can you afford to go private? Friend of a friend had similar probs—it was gallbladder and though she was incredibly ill the NHS told her she would have to wait a year for surgery! Cos of covid apparently. She went to a private consultant and is scheduled for surgery in a couple of days’ time. It will cost 7 grand and will use up a chunk of her savings but it is well worth it.

Frlrlrubert · 06/11/2021 23:22

I was also told to go straight to A&E if jaundiced or feverish - I would hope you won't be an 'average wait' with those symptoms, you should be seen urgently.

PickAChew · 06/11/2021 23:23

[quote BarelySurviving]@PickAChew what is the nitroglycerin spray for?[/quote]
Angina

TeethingBabyHelp · 06/11/2021 23:23

@BarelySurviving I should add mine was in 2015 and I imagine it could be a different situation now with covid backlogs - but worth a try?

Original poster
BarelySurviving · 06/11/2021 23:25

@Plantpot75
Thank you for your advice, I will look into a suitable diet for this and see if it's sustainable/manageable for me. It was only yesterday I found out there was an issue with my gallbladder at all, this was never once mentioned to me as a possibility so I don't really know anything about it. Nothing was really explained to me. I will try to get through to GP in the week again, and see if there is anything I can do to push this.

OP posts:
Angryattrackandtrace · 06/11/2021 23:26

Ahh yes I remember the pain… horrific 😞

They told me I may have to wait 6 months but after passing out twice (due to the pain) and my mum calling an ambulance I was actually given the operation about 6 weeks after the official diagnosis.

I found hot water bottles and avoiding diary really helped.

But not enough to stop me passing out from the pain 😣. Hope you get it done quickly.

Original poster
BarelySurviving · 06/11/2021 23:28

@DrNo007 I cannot afford to go private, it's sadly not an option for me. I've just been getting by on statutory mat pay and universal credit and now my mat pay has stopped and UC doesn't even cover the basics.

OP posts:
RandomMess · 06/11/2021 23:28

Now you now it's your gallbladder you can switch to a completely fat free diet and you may find that alleviates the symptoms massively, I really hope it does for your sake.

Original poster
BarelySurviving · 06/11/2021 23:29

Last month I did have an awful fever, was shivering but really high temperature. Was ill for a couple weeks, it absolutely floored me on top of everything else. I do now wonder if that was connected.

OP posts:
StaplesCorner · 06/11/2021 23:36

Thing is though you should be given a full and formal diagnosis, and I'm not sure you have that yet. I think someone upthread said contact PALS and maybe ask if you can see a specialist. I think your GP surgery needs a bit of a shake too - never mind all the "its routine make an appointment for December". Ring on Monday say you want to speak to the practice manager. There's no reason why you should have to go private, but there's every reason to make a lot of noise and get some firm answers.

Biscuitandacuppa · 06/11/2021 23:37

The symptoms you had last month could have been cholecystitis (infection in the gall bladder). I had the same as you and the only relief I got was an extremely low fat diet. I basically lived on grilled chicken and rice.

You need to chase the referral as jaundice shows it’s affecting your liver. I’d also go back to A&E if the pain is not manageable at home.

I had mine out 2 years ago and no problems since.