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.

@SpringCrocus

I paid for my US scan, the nhs wait was 6 months (20 years ago, mind) Same consultant in both NHS and Private hospital systems 🙄

I waited 3 weeks for my scan less than a month ago.

@SpringCrocus But the test for gallstones is not carried out by a consultant. Its just an ultra sound scan. I waited 3 weeks.

I was the same waiting for surgery was told 6 months wait list I am now going into four years wait and only excuse I get now is because of covid. I learnt what food triggers the pain. I found cbd oil was a game changer for me for overall health. Worked on my fitness and health

OP where are you in the country? You need to go tomorrow to a different A&E.

Flag the jaundice, brown urine, vomiting, the degree of pain, the fact that you have considered suicide to stop it, and the fact you recently experienced a high fever with this.

Do not let them fob you off.

With the tens machine, could you ask on Facebook or freecycle if anyone has one to give or lend to you? It’s the kind of thing people might’ve used and then shoved in a cupboard. I have one I got at Aldi once and would definitely pass on to someone if I saw someone who needed one (unfortunately, I’m not in the UK so can’t help you).

Sorry I meant to say, it’s horrendous you are being treated like this when you are so clearly so unwell. If it’s something the A&E doc thought your GP should manage - well clearly they aren’t so why can’t he help you?

I did say my experience was 20 years ago

OP you need to complain to PALS. I am waiting for a gallstone operation - average local waiting time 6 months. But I have been told if I have any sign of an inflamed gallbladder (I don't) I will be taken in quickly.
I am really confused about what is happening to you as it is so different from my experience.
And I was told if I start vomiting to go to A and E urgently.
I also don't understand why you have had a second scan?
Are you in the UK? Because frankly this shouldn't be happening, so complain to PALS.
I am sorry to hear about this. It is so different from my experience and that of family and friends at different hospitals. Something has gone badly wrong with your care. So kick up a fuss.

@SpringCrocus

I did say my experience was 20 years ago

Yes I know. But waiting lists then were shorter than now so I am really surprised.

@cantdocando

I was the same waiting for surgery was told 6 months wait list I am now going into four years wait and only excuse I get now is because of covid. I learnt what food triggers the pain. I found cbd oil was a game changer for me for overall health. Worked on my fitness and health

I am awaiting surgery and have been told 6 months. But I have also been told that they do try and get people to manage gallstones with a lifestyle change in the first instance rather than surgery. Because ultimately an unhealthy lifestyle can be the cause. So I wonder if this is what is happening in your case?

@BarelySurviving

They didn't do a blood test at the hospital, and no mention of MRI. There was no sense of urgency at all really, they even told me it's not urgent. The pain has been so bad I have considered overdosing to end it because I can't cope anymore, every day is so difficult. But I won't do that of course because of my baby daughter

Please please don't OD. when I had a spine op done about 10 years ago, I was shocked to hear that a women in the next bed who goes to the same 'doctors' as me had been given a vast array of painkillers and had to wait far less time than me simply as she ''Complained'' a lot. {Her condition wasn't as bad, so say. Most definitely the squeaky wheel gets the oil. I mentioned it to the nurse who took my stitches out and she advised me to complain.

I was bought up not to ''Fuss'' ...But being quiet and grateful gets you nowhere.

Bloody Covid is ridiculous, that's all that seems to matter these days.
What about all those put on the back burner because the don't have Covid, but have other, serious conditions?

This Tory govt is awful. Bet they all have private medical care.

@oakleaffy an MRi is not what you need for gallstones. An ultrasound scan is what is used.

This sounds dreadful OP. I would present myself at A&E with a pre prepared list of my symptoms at that moment. They have to see you.

[quote BarelySurviving]@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.[/quote]
if you've only recently been advised it's a problem with your gall bladder, but not given much advice, google "NHS Gall Bladder"
sticking to NHS website will keep you clear of the gorier /more fantastical side of the internet.
also try "NICE guidelines Gall Bladder"

This is absolutely outrageous They didn't do a blood test at the hospital, and no mention of MRI. There was no sense of urgency at all really, they even told me it's not urgent. The pain has been so bad I have considered overdosing to end it because I can't cope anymore, every day is so difficult. But I won't do that of course because of my baby daughter sad

Whoever you speak to about this - GP, MP, PALS, local paper tell them that you have considered overdosing because the pain is unbearable.

My DF had similar symptoms and they couldn’t take his GB out for a week as they had to treat the infection first. You should not have been made to feel bad at A&E. At a time when you probably feel too rough to kick up a fuss you are going to have to OP. When it gets to this stage laying it on the line I feel suicidal , i can’t cope, i will contact my MP/local paper as it’s not ok to be left in this state . Hopefully you will get the treatment you so desperately need. It shouldn’t come to kicking up a stink but I think its sometimes the only way 💐

As soon as I started to read your symptoms I thought gall bladder. That crushing constant pain that never goes away.
I was diagnosed in The October and operated on March (pre Covid) and was very lucky to get it that quickly.
It was horrific and I’m sorry you’re going through it.
Be very careful with your diet and it might help, no fat or dairy if you can help it. It really helps.
Since my op I’ve had no recurrence whatsoever, such a relief.

Get some Buscopan, it will stop the terrible spasms.

Get an Antacid like Zantac from the pharmacy. Acid will irritate the gallbladder.

Olive oil and lemon juice will calm things down.

Avoid spicy foods and caffeine.

Avoid fizzy drinks.

Avoid processed fats, the type you get in junk food.

Avoid too many carbs.

I'm nursing a diseased gallbladder and mostly keep it under control by doing these things. You absolutely must get tested though because the symptoms you are describing are extreme. They need to assess you for pancreatitis as well, this is done via a blood test. Pancreatitis can be dangerous, so make sure this is done ASAP.

Mix the lemon juice and olive oil together and drink straight off. About 10mls of each.

Hot water bottle for the pain.

Codeine can make gallbladder pain worse, so try to avoid. The GP should prescribe Tramadol or Oramorph for a severe flare up.

Gallbladder pain is just awful. I had infected gallbladder, and then gallbladder surgery a few weeks later, we had private insurance thankfully, the first time we ever used it, sadly not the last time though. The best advice I can give, is what my GP said to me, to cope with the symptoms before surgery is to stick to a Stone Age diet, eliminating fat, as fat will trigger an attack. I hope you know have to wait too long for your op. Good luck.

Any time you’re seriously ill with it, go to A&E. especially if you’re jaundiced. They may do emergency surgery or at least bump you up the list.

I had my GB removed, it was a hideous 9 months waiting. I lost a shit load of weight. I recommended removing all fat out of your diet - no cheese, red meat, chocolate, eggs, avocado, cream, cakes, biscuits, take aways, pizza etc.

Instead skimmed milk, low fat phil, chicken, rice, pasta, bread. Sweets are your friend as they don’t contain any fat, just sugar. Hopefully it will help to bring your symptoms under control.

If it’s your gallbladder then taking IBS medication that relaxes your muscles can help with that. I was taking it before my op on my GPS recommendation alongside pain medication.

Get in touch with your GP OP and ask if medications for IBS that relax muscles can help you manage the pain.

On the triggers. It was fat and sugar that really set mine off so I just ate vegetables and meat until my surgery.

I think it’s time you wrote to the practice manager at your GP surgery and PALS office at your local hospital. Your treatment has been dreadful and they can’t keep blaming past pregnancy or covid for fobbing you I’ve had this in the past (and present, and no doubt future) with my DH & DD and when you put your stomping shoes on and put your foot down hard, they usually respond.

www.nhs.uk/service-search/other-services/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

Link to find your local pals.

In case anyone else reads this with chest pains but not a gallbladder issue, look into costochronditis - incredibly painful heart and chest pain which is actually inflammation of your sternum/ribcage connective tissue. Doesn’t feel musculoskeletal though so very often overlooked! More common in women because breasts put added pressure on that area! Not very well known either.

@julieca

I am waiting for a gallbladder operation, was diagnosed in 3 weeks and saw a consultant within 6 weeks and my symptoms tbh are pretty mild. You don't need an MRI, what you need is an ultra sound scan. But it sounds like the issue is with your GP. It is your GP who organises the tests and then refers you to the appropriate consultant. I would move GPs. And yes low fat diet, no spices, no alcohol. I have been told to follow that until my operation and it has totally cleared up my symptoms.

You can't possibly know she doesn't need an MRI. Her symptoms are severe and indicate a blockage of the bile duct. Mine couldn't be diagnosed with just an ultrasound, it was discovered with an MRI.