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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:
Seasonschange · 10/11/2021 11:57

op I’m so sorry it sounds like you are really ill. Can you see a different GP at least? It sounds like you should be in hospital.

JSL52 · 10/11/2021 14:47

@TatianaBis

111 is just a bunch of admin peeps with no medical training.

The only options they can offer the OP are:

  1. Go back to her GP
  2. Go back to A&E
  3. OOH GP
No they're not. Qualified nurses triage and assess people. I've done it.
3scape · 10/11/2021 14:51

It very much sounds like a gall bladder problem and going yellow is a cause for concern

bestcattoyintheworld · 10/11/2021 14:54

OP, you need to force them to take this seriously. Jaundice and dark urine are serious symptoms. You need proper assessment, tests and attention. This should not be happening to you. Threaten them with a clinical complaint if necessary. If your pancreas gets involved it will not be good. Your gallbladder could also be infected. You don't need to have stones to have a diseased gallbladder.

bestcattoyintheworld · 10/11/2021 15:03

Can you get your OH to deal with this? Insist someone sees you urgently. They might take more notice of a man. The stone must be obstructing the duct if you're jaundiced.

Itwasquitegood · 10/11/2021 15:15

I have gall stones and a diseased gall bladder. It's finally coming out soon. I really feel for you. Unfortunately, the way the NHS is now you have to push, push and push to keep getting to the next stage. It's exhausting but for many of us not blessed with great GP practices it's the only way. From my first visit to the Dr with the kind of pains you describe I had to keep phoning back saying everything they had suggested has not worked so what next. Eventually got a scan. Gall stones confirmed. Then more pushing - what next? Various courses of antibiotics to bring inflammation down. OK, worst symptoms calmed down but still often in pain. Not managing the pain with the pain killers and don't want to be like this forever. Back to the GP - what next? Eventually got referred to consultant and put on surgery list.

It's an awful state of affairs. I wish you all the best and hope you can get the care you need. I know it's really hard when you are in severe pain. I hope your husband can help you like someone suggested Flowers

TatianaBis · 10/11/2021 15:25

@JSL52

No they're not. Qualified nurses triage and assess people. I've done it.

So has everyone. The people you speak to are admin with a checklist.

If they decide it’s necessary they may ask a nurse or doctor to telephone you. But the people who answer the phone have no medical training.

SecretDoor · 10/11/2021 15:25

I think you may have obstructive jaundice probably from a stone in the bile duct
You need to go to A&E urgently

www.nhs.uk/conditions/gallstones/complications/

TotallySuper · 10/11/2021 16:33

Op I think you're being too polite when you're speaking with GP etc so they're not listening, unfortunately you sometimes have to get quite abrupt to get the referral etc you need. I wouldn't go to a&e at this stage - I'd eat a massive greasy fry up then lie on the floor and call 999. They've pushed you into this position and now they need to deal with you properly. You've done everything right and they've all let you down x

TatianaBis · 10/11/2021 16:44

@TotallySuper

Op I think you're being too polite when you're speaking with GP etc so they're not listening, unfortunately you sometimes have to get quite abrupt to get the referral etc you need. I wouldn't go to a&e at this stage - I'd eat a massive greasy fry up then lie on the floor and call 999. They've pushed you into this position and now they need to deal with you properly. You've done everything right and they've all let you down x
If she does that she will go back to the same A&E she went to last time. All the stuff they told her will be on file and unless she’s very lucky and she gets an randomly good doctor they will likely repeat what they told her last time.
bestcattoyintheworld · 10/11/2021 16:57

Do not induce an attack, this could be dangerous.

Original poster
BarelySurviving · 10/11/2021 17:03

I'm not inducing an attack, I don't want to be in a lot of pain for hours or days and left without help. Sad

When I saw the doctor on Monday I was very abrupt, I kept telling her this isn't good enough, I was not accepting at all what she was telling me. So I was therefore difficult, and easy for her to dismiss as delusional and hysterical.

OP posts:
Original poster
BarelySurviving · 10/11/2021 17:04

So I was not being polite at all, it's like I'm damned if I do damned if I don't.

OP posts:
TotallySuper · 10/11/2021 18:35

Yes but this time her condition will be far worse and she will be a medical emergency, do you really think even if that wasn't the case they would just say "oh we've seen you before" and not treat her?

I get what you're saying OP but it might be the only way to get it sorted. I too have had my gallbladder out so I understand the pain but surely living like this day to day is worse.

TotallySuper · 10/11/2021 18:36

@BarelySurviving

So I was not being polite at all, it's like I'm damned if I do damned if I don't.
Sorry to hear that. She was obviously just a completely tone deaf GP. Maybe get a 2nd opinion from another GP?
bestcattoyintheworld · 10/11/2021 18:40

Care should not be handed out depending upon how a random GP feels about the interaction and whether or not the patient was deferent enough. Wtf is wrong with these people?

This is totally unacceptable.

bestcattoyintheworld · 10/11/2021 18:41

Deferential that should be

TatianaBis · 10/11/2021 18:45

Yes but this time her condition will be far worse and she will be a medical emergency, do you really think even if that wasn't the case they would just say "oh we've seen you before" and not treat her?

It was fairly bad last time. The only difference is that OP’s poo is now white which could indicate a blockage. That may be enough it may not.

If OP really cannot make it to another A&E then she has no choice but to return. Otherwise she might try to see a different GP at the same practice.

In London you can call 111 and request an appointment with an OOH GP - which would most likely mean a different practice from OP’s. She could also try that.

bestcattoyintheworld · 10/11/2021 18:53

She's entitled to a second opinion.

Perhaps if she has enough money she could see a Gastroenterologist privately and they could see her on the NHS to have this treated.

Somebody has to help her. This is unbelievable.

Original poster
BarelySurviving · 10/11/2021 20:06

Thank you so much everyone for your replies, I appreciate all of them. I ended up calling 111 and they told me to go to A&E within 1 hour as very concerning, so currently sat in A&E waiting. I will be insistent on having my jaundice checked properly (bloods/urine samples), as 111 thinks that should be properly checked. If anyone wants to tell me I shouldn't be here like last time, at least I can now say 111 sent me here.

OP posts:
TotallySuper · 10/11/2021 20:10

@BarelySurviving

Thank you so much everyone for your replies, I appreciate all of them. I ended up calling 111 and they told me to go to A&E within 1 hour as very concerning, so currently sat in A&E waiting. I will be insistent on having my jaundice checked properly (bloods/urine samples), as 111 thinks that should be properly checked. If anyone wants to tell me I shouldn't be here like last time, at least I can now say 111 sent me here.
Well done. Lay it on thick, 10 out of 10 for pain, feeling suicidal etc. You're not lying but I just mean be dramatic if that's what gets you help. Good luck 👍
TatianaBis · 10/11/2021 20:22

Brilliant OP.

Do emphasise that the pain is unliveable and you are off work it is so bad, and the white poo as it is new.

Here’s your checklist as it’s hard to remember everything when you’re on the spot:

  • degree of pain and location
  • yellow skin
  • brown urine
  • loss of appetite, nausea, vomiting
  • previous high fever
  • white poo
  • itching
  • previous diagnosis/ultrasound
Original poster
BarelySurviving · 10/11/2021 20:24

I don't currently have the crushing pain and I think it's a bit obvious so don't want to lie about that and get caught out, but I can feel some pain in the centre of my back and feels like it'll start soon enough. I also have pain in my right side. Just been triaged by a lovely nurse and told the wait is 4 and a half hours, as A&E is busy with people who couldn't get GP appointments.

OP posts:
Original poster
BarelySurviving · 10/11/2021 20:26

@TatianaBis I managed to remember all of that, sometimes being put on the spot makes you forget important details and you kick yourself later!

OP posts:
TatianaBis · 10/11/2021 20:27

Have you had the crushing pain today, do you have it daily, how long does it last?