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.

Are you on a fat-free diet? If not, you need to implement this pronto.

Pregnancy is a common trigger for gallbladder problems, I discovered. Had mine out 20 years ago, after decades of problems, mine finally went v v bad after giving birth, had it out when DD was 6 months old, after 6 months of agony, fever and jaundice.
Keep complaining!

If you are jaundiced they should be taking it out as an emergency , I don't understand why they aren't ?

I was told to look out for
Jaundice
Dark pee
The pain gets worse
Any of these go to a &e

I really don't know why they have left you
Definitely needs a pals complaint

Would you mind sharing your nhs trust ?

"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)."

This is the point with me where they were like we need to get this sorted ASAP we can't let you go home, and admitted me to hospital. I can't understand why they are telling you to wait for surgery at some point. At A&E did they do blood tests to check your jaundice levels? Also have they said about doing an MRI to see if there is a blockage?

When you feel unwell put hot water bottle under your right breast, on the stomach, where pain is the worst. Try to lie down when your pain is the worst.
Have look at this advice about diet
www.mkuh.nhs.uk/patient-information-leaflet/dietary-advice-for-gallbladder-disease#
Reducing fat in your diet should be your top priority and can be done straight away. And should also make difference to how you feel.

No advice to add to the good advice here but keep plugging away at them. The pain is dreadful and they should treat you.

I lived on dry toast, weak black tea, water, apples and lean ham for several months. Lost 5 stone as well, which was not good or needed.

And yes , in and out of hospital via blue light ambulance virtually every week due to a crippling attack of gallstone pain ( for a stay of several days each time) despite the ultra low fat diet

with a EBF baby, was not fun.

I shudder when I recall it, now. Horrific time.

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

You need to complain, they are not taking this seriously

I knew you were going to say gallbladder before you even got to it - the jaundice in particular in addition to the pain. It's awful.

Mine started acting up when I was pregnant. Went undiagnosed. Silly pregnant lady just had indigestion

Baby was about 2-3 weeks old when it started again. Middle of the night attack, gp following day who immediately recognised symptoms, did bloods, phoned next day and told me to go to hospital due to lft results. Hospital less worried but scans confirmed gallbladder and I was put on waiting list

Few days later, horrendous attack. Husband called nhs, they sent ambulance. IV morphine given, taken in. Sent home with oramorph. More attacks which weren't well controlled, then another one where I ended up at A&E again (I'd had a c section weeks before, was EBF and had a wound infection, I couldn't cope with it at all). Surgeon bumped me to semi emergency list and it was out a few days later - baby was 5.5 weeks which gives an idea of speed.

I ended up developing a complication afterwards which basically has the same damn symptoms (probably sphincter of oddi dysfunction ) so I've got more practice at managing the pains. For me

• codeine is awful, it makes it worse
• anti spasmodics like buscopan taken at the first twinge lessen it
• diclofenac helps pain (as does morphine )
• tens machine really helps, both distraction and seems to help release spasms. This was the game changer for me although I only found it post removal when I was desperate for any relief

That said, the super dark wee and jaundice can indicate an active blockage and a very fucked off liver and shouldn't be ignored. I had both too. So I'd have no qualms about going back to hospital or gp and making a nuisance of myself. The pain is insane and if it is that constant it needs dealt with as it suggests a very intense version.

Low fat diet helps some but did nothing for me sadly.

@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

This is dreadful. I'd go back to a different A&E, is there a bigger hospital you can go to? I had to go from the smaller A&E I went to to a larger hospital to get everything sorted. If you have a blockage, which sounds likely if you have jaundice, then they will probably need to clear this first with a different procedure before you can have the gallbladder removed. I was having blood tests every 2 days approximately to check the levels. They were really concerned. The paperwork I have now for surgery says if I get any jaundice symptoms again I have to call immediately for another blood test. Also they couldn't see my blockage with ultrasound, only once they did the MRI.

@StatisticallyChallenged

I am so sorry to hear about your experience and ongoing pain following the surgery, it sounds truly awful. Another poster also recommended buscopan, so I will definitely give that go. I considered tens machine as well but didn't know if it would be a waste of money. Cocodamol helped manage pain to start with, not completely but it eased it, but I noticed over time it's become less effective, and now almost practically useless. I didn't know it could make it worse. I also questioned the doctor yesterday about it, that surely it can't be good for my liver given my current condition to keep taking cocodamol every day. He said it's completely fine and only harmful if I overdose on it! I have prescription for morphine now, but idk how long I can stay on morphine for.

I wonder if it'd help if you made an appointment with GP and told them (again) what you've said here tonight. It's severely affecting your day to day life and feels unbearable.

GPs often rely on people going back to them when the pain is worse and assume all is well that you can wait, when you don't end up keep going back. It sounds like they might have to sign you off work soon if it keeps getting worse .

Seeing your distress & describing the impact to a sympathetic GP might help them decide they want to chase it up or increase your urgency.

It sounds hellish OP. I really feel for you xxxx

[quote BarelySurviving]@StatisticallyChallenged

I am so sorry to hear about your experience and ongoing pain following the surgery, it sounds truly awful. Another poster also recommended buscopan, so I will definitely give that go. I considered tens machine as well but didn't know if it would be a waste of money. Cocodamol helped manage pain to start with, not completely but it eased it, but I noticed over time it's become less effective, and now almost practically useless. I didn't know it could make it worse. I also questioned the doctor yesterday about it, that surely it can't be good for my liver given my current condition to keep taking cocodamol every day. He said it's completely fine and only harmful if I overdose on it! I have prescription for morphine now, but idk how long I can stay on morphine for.[/quote]
Buscopan should help, they gave me that with paracetamol and codine in the hospital to help with the pain.

Touch wood it's behaving better just now, has been for a year roughly. They treated me like a total hypochondriac when the pain came back again - I was in hospital for a few days last year and they just weren't doing anything (they kept missing the attacks happening) until at one point the consultant came round and found me rocking on all 4s and sobbing in pain. Afterwards the nice nurse came by and said "maybe they'll believe you now ". Which said it all really.

Tens is worth a shot IME- you don't need an expensive one. I've had a couple from amazon, and an emergency argos purchase when I couldn't find mine. Think that one was the most expensive at about £25.

Hope you get this sorted ASAP, OP.

I had gallstones and an inflamed gallbladder following the birth of my second DC.

Took me a few (milder) attacks to work out there was a pattern and it wasn't just bad indigestion. Several (lockdown) calls and a visit to the GP later and I managed to convince him that I wasn't just moaning but that I really felt unwell. Eventually referred for an ultrasound and blood tests which showed problems with liver function, an inflamed gallbladder and riddled with gallstones. Told to keep an eye on it.

Despite a careful low fat diet; several fun-filled excursions to A&E and a two night stay in the Surgical Assessment unit later when I just couldn't manage the pain and vomiting, I was referred for the op. Given Diclofenac suppositories to help at home, as the Oromorph caused terrible constipation.

So many in A&E at the same time as me there with the same/similar thing, it seemed. Several pregnant women in Surgical Assessment, howling with pain with the same problem.

Waiting list took from March to September this year so really not as lengthy as I'd been warned.

Op amazing, keyhole and immediate relief. Felt comfortable within 48 hours but took care for 6 weeks or so no heavy lifting etc. No stitch removal required, all dissolvable.

Consider myself very lucky to have had the op in good time and no further complications. Can't understand why there isn't more education and proactive treatment for this condition that is so common, and must cause so many GP, A&E etc visits and lost work days. I honestly thought I was dying several times, so much worse than labour, just agony.

@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

Is your baby bf? Because apparently jaundice alters the taste of breast milk and babies can suddenly find it distasteful? That happened to me and was an additional distress during a very difficult time.

@StatisticallyChallenged

I knew you were going to say gallbladder before you even got to it - the jaundice in particular in addition to the pain. It's awful.

Mine started acting up when I was pregnant. Went undiagnosed. Silly pregnant lady just had indigestion

Baby was about 2-3 weeks old when it started again. Middle of the night attack, gp following day who immediately recognised symptoms, did bloods, phoned next day and told me to go to hospital due to lft results. Hospital less worried but scans confirmed gallbladder and I was put on waiting list

Few days later, horrendous attack. Husband called nhs, they sent ambulance. IV morphine given, taken in. Sent home with oramorph. More attacks which weren't well controlled, then another one where I ended up at A&E again (I'd had a c section weeks before, was EBF and had a wound infection, I couldn't cope with it at all). Surgeon bumped me to semi emergency list and it was out a few days later - baby was 5.5 weeks which gives an idea of speed.

I ended up developing a complication afterwards which basically has the same damn symptoms (probably sphincter of oddi dysfunction ) so I've got more practice at managing the pains. For me

• codeine is awful, it makes it worse
• anti spasmodics like buscopan taken at the first twinge lessen it
• diclofenac helps pain (as does morphine )
• tens machine really helps, both distraction and seems to help release spasms. This was the game changer for me although I only found it post removal when I was desperate for any relief

That said, the super dark wee and jaundice can indicate an active blockage and a very fucked off liver and shouldn't be ignored. I had both too. So I'd have no qualms about going back to hospital or gp and making a nuisance of myself. The pain is insane and if it is that constant it needs dealt with as it suggests a very intense version.

Low fat diet helps some but did nothing for me sadly.

Oh god are you me? I had pretty well the same experience, except it took six months before I was finally operated on. And I ended up having to taper off morphine, after 🙄 My sympathies!

I'm shocked so many people have had to suffer for so long before getting surgery. Before my more serious episode which started in August I had had issues with pain over 6 years. But I'd get it for a few hours and then it would be months before another attack so I never bothered to get it investigated until I had the additional jaundice, vomiting and itching symptoms this most recent time. I'm so shocked they aren't treating it more seriously OP. I hope you get sorted soon 🤞

It's shit isn't it @SpringCrocus. I think the doc probably took pity because I was having to pitch up to a&e with the whole clan - baby was ebf with a recently discovered dairy allergy so I had to feed her but during attacks I couldn't really look after her so husband needed to be there to do everything else. It was all I could manage to stay still long enough to let her feed. Husband being there meant the 8 year old had to come too...

It's incredible how many women this happens to and how hard many have to fight. Anyone who has experienced it knows it's not even fucking close to indigestion. The GP who I first saw was old school and did an excellent impression of the rolling with pain walk/stumble you do with it when you can't sit, or stand, or lie, or do anything really

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.

@StatisticallyChallenged

It's shit isn't it *@SpringCrocus*. I think the doc probably took pity because I was having to pitch up to a&e with the whole clan - baby was ebf with a recently discovered dairy allergy so I had to feed her but during attacks I couldn't really look after her so husband needed to be there to do everything else. It was all I could manage to stay still long enough to let her feed. Husband being there meant the 8 year old had to come too...

It's incredible how many women this happens to and how hard many have to fight. Anyone who has experienced it knows it's not even fucking close to indigestion. The GP who I first saw was old school and did an excellent impression of the rolling with pain walk/stumble you do with it when you can't sit, or stand, or lie, or do anything really

I lived on Gavascon during pregnancy, was told the rhs/shoulder blade pain would "go away" on delivery. Ha fucking ha. No. It didn't, because it was my Gallbladder inflammation. 🙄

I think sometimes it can take a while to get diagnosed as the symptoms can mimic a lot of ordinary everyday things. But the only person I knew who did not get diagnosed and referred quickly is a relative with a useless GP.
TBH I suspect I will have my operation - from first GP visit to operation - quicker than you have had a diagnosis. You need a diagnosis. That gets you on the path to surgery.

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 🙄

@fsdre

I'm shocked so many people have had to suffer for so long before getting surgery. Before my more serious episode which started in August I had had issues with pain over 6 years. But I'd get it for a few hours and then it would be months before another attack so I never bothered to get it investigated until I had the additional jaundice, vomiting and itching symptoms this most recent time. I'm so shocked they aren't treating it more seriously OP. I hope you get sorted soon 🤞

Yeah, but it mostly affects Women. And is worse in pregnancy /post partum women. So, not a priority, are we. 😡