Gallstone timeline and what to expect

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I am finding vanishingly little info on this and nothing helpful from GP so trying shared wisdom of Mumsnet! I have posted before but there has been a development.

For several years now I have had stomach upsets and pains - usually leading to nausea, loss of appetite and vomiting . Put these down to anxiety, sleepless nights I can have whole nights of not being able to sleep, especially if a bit anxious, and this always makes me sick : bit of a chicken egg thing) , covid a couple of times, shingles once, perimenopause symptoms etc - so quite hard to pin down. I also have high BP, slightly raised cholesterol and recurrent anaemia.

Back in May, DH decided to come to GP with me - partly because I was so upset and ill and partly because he felt I wasn't being taken seriously. I had already had various pelvic scans due to excruciating pain around periods and on some version of HRT. Unconvinced by all the emphasis on pelvis , DH asked GP why they weren't looking at my stomach. Hey presto, GP organised referral for urgent abdo scan. (yes, this made me tut too)

I waited until late July for this (so about 7 weeks) convinced it would be a waste of time. The scan found a very large gallstone (3 cm) and a distended gallbladder . No signs of acute issues, blockages, nothing wrong elsewhere. God knows how long this stone has been lurking there.

Different GP called within a day of this scan and said she would refer me to gastro team but gave no other advice or information, except to go to A and E if I have an attack (I did - they sent me to urgent care who found I had a kidney infection so not gallstone that time). NHS app suggests this referral was done within a few days. I was pleased about this because I am not convinced every stomach issue I have had sounds like gallstone issues (separately , I have a routine gynae appointment in September which I waited about 6 months for as a non urgent referral following a scan showing a slightly thickened womb lining). I thought the gastro team might also look at doing an endoscopy for example (and the urgent care doctor I went to two weeks ago suggested they would/ I could ask).

I looked at my app two days ago and I have my appointment scheduled. This is at the hospital and headed 'gallbladder service' whatever that means. It is in April! That is 38 weeks since the referral went in. This seems a really long wait just for an initial consultation to me, well in excess of, for example, any gynae waits I have had. If I knew anyone else had had a wait like this, I might feel better . I googled wait times for gastro referrals to my hospital and it's well over average which is 22 weeks. I thought there was a new rule where you could be sent somewhere else if a wait time was considered excessive but can't find the details.

Does this chime with anyone else's experience when a gallstone has been found? Do you think my GP may have underplayed it ? Are there different 'pathways'? I am wondering if, because it is big, they have decided it is parked and won't go anywhere! Doctor Google suggest there is greater urgency attached to gallstones if they have been found following reports of symptoms, rather than coincidentally, and I fall I would have thought in the former camp.

What happens at an initial appointment and what sort of timeframes and processes are there from there?

I am hugely in the dark, as you can tell. Has anyone else had a large stone resident in their gallbladder and has this in itself caused you troubles?

It's put a cloud over everything because I find myself scared to go anywhere, to eat anything fun, to book or plan anything (and I think that having a pending appointment will cause no end of travel insurance hassle too). In a lot of cases, knowing things makes people feel reassured or better - but in this case, the knowing with no solution in sight is frustrating. As is the fact that I think this may not be the full answer to my recurrent bouts of vomiting and nausea.

Sorry for the epic! Any responses even if just supportive sighing welcome!

My experience is that people do wait a very long time for gallbladder removal, but there is a chance that you can be 'bumped up' the list if you are poorly with it.
My sister waited about 6 months until she ended up hospitalised with a gallbladder/liver infection. She was sent to a private hospital (through the NHS) a few weeks after.
My dad didn't know he had gallstones until he almost died from pancreatitis. He waited a few months after coming out of hospital to have his removed.
Mine was the fastest because my gp put me on the 2-week pathway because I was jaundiced amongst other symptoms. I only waited a few weeks (although I'm not counting the decade of symptoms beforehand!).
Annoyingly I think that it's treated as something very routine, and unless you're having complications, it is a long waiting list. I could be totally wrong, but it does strike me as one of those conditions that affects predominantly women, and is assumed that people can just carry on with, even though I fully agree that it can be totally debilitating.
Keep pushing. Go to the doctor every single time that you have an episode.

I waited 3 years from diagnosis to removal. My operation was also cancelled 3 times while I was in pre op.

Yes, I will. The frustrating thing to me is I think I am just waiting to have a 5 minute appointment with someone, and then I assume I will enter another waiting period!

It's a bit like a strange limbo of uncertainty. A few weeks ago, I obediently went to A and E with an attack. It was a kidney infection though- and the time before was shingles) so now I don't know if I am even having attacks..

Wow. I had no idea.

Sorry to say that it is unlikely they'll do much yet. My dh had similar and his attacks were put down to ibs. Had a bad attack and was in hospital where they found his gallbladder was like a bag of marbles. They discharged him with no follow up.
4 years later and he was acutely unwell with a blocked bile duct. 10 stones had been pushed out and got stuck. They had to sort that first with a stent, then he had the gallbladder out. Then stent removal 3 months later, where they found a further 6 stones.
I hope yours is more straightforward.

I had my gallbladder removed 3 weeks ago.

My timeline was my first attack was at the end of September 2023 quickly followed by a few more. GP referred me for scans, suspecting gallstones, and I had to have two lots of these as the first set were unclear.

I was referred for removal surgery at the end of November 23 and my subsequent referral appointment with the hospital was due to be in March 24. This was then postponed by 6 weeks.

After a particularly bad couple of weeks in March with multiple attacks (I'd had over 30 by the time of the surgery) I emailed the surgical dept and asked if there was any chance of being seen sooner due to the frequency and severity of the attacks. They changed my appointment by 10 days which was better than nothing and I felt there was someone listening to me.

It was actually a telephone appointment and we agreed removal was the best option. I was told it would be within 2-3 months. I didn't hear anything for 2 months so I emailed again to ask if the 2-3 months timeline still applied. I received a phone call quite quickly after that and was 'pencilled in' for late July. It wasn't confirmed until a week before.

I felt like it would never happen at some points and it was affecting my life quite badly. I'm glad I emailed them. It may have happened within their original timeline anyway but the waiting was very hard.

I don't know if every Trust is the same, but my series of appointments was only (after GP):

1. Ultrasound scan.
2. Pre-op appointment, bloods taken etc, met the surgeon.
3. Surgery.

The pathway is pretty simple (even if is slow) because generally gallstones are diagnosed at the ultrasound and the conclusion is almost always surgery for gallbladder removal. So after this appointment that you have scheduled, you'll just be waiting for your surgery date. My sister and I both had our surgery on the first planned date, my dad was on the third(!) attempt.

Gosh, quite a range of experiences here!

I wish I knew what my appointment in April actually entails , but I don't have a letter.

I have sent a message to my GP asking for some clarification.

Your appointment in April will probably be with the surgeon to assess your suitability for theatre (factors such a comorbitites and bmi etc) at this point they’ll either list you for surgery or request additional tests, such as an MRCP, or ask you to lose weight, then make you another clinic appointment in another few months to reassess.

We currently have a one year wait from being added to the elective waiting list to having the surgery for lap choles.

OK, thanks. I hope this is correct and that is what it is. You'd think in the meantime there might be some advice from GP?

The urgent care doctor who said gastro would probably also do other things to look at rest of stomach was talking nonsense?

The GP will probably just tell you to keep to a low fat diet so prevent any attacks of biliary colic. There’s not much more they can do now other than help you manage the symptoms and refer you in if you have any complications whilst awaiting surgery.

Gastro deal with the stomach so if your GP still wanted you to have an OGD they would do that. Your gallbladder will be managed by the upper GI surgeons.

GP never suggested it. They just sent me for the scan. Hmm. Will ponder this. What dies an endoscopy find that a scan wouldn't?

I am wondering the same OP as I have just had a diagnosis of them too.

I have had one attached plus some niggles. I saw GP, they referred me for ultrasound.

Then I had to book a GP appointment to discuss results. GP told me it was gallstones and said she would refer me.

So now just a waiting game.....

I did wonder- does the ultrasound get reviews by a dr or is it the sonographer who diagnoses it? I just wondered if this could have been done more efficiently because the GP said "yes, gallstones, I'll refer you" and said to eat a low fat diet in the meantime.

One *attack

My ultrasound was read by the man who did it, who was a doctor . He sent report to GP surgery and they referred.

Maybe we should have a race and see who gets seen to first!!

I was in acute organ failure when mine was diagnosed so it was straight to hospital and the op. I had a gall stone trapped in my pancreas.

It hadn't occurred to me the vomiting and pain after dinner was anything serious. It was about 18 months of that before I ended up in A&E.

An OGD looks into the stomach whereas the USS does not, most commonly ordered if they suspect stomach ulcers.

Ah, I see. Thanks.

I also had pancreatitis, so within 7 days of finding out that I had gallstones, my gallbladder was out. I was therefore lucky that an A&E visit (albeit several days of real pain) did pay off. I guess there isn't an option for a private lap chole?

Mine was 2 years from being referred to having surgery. It took a year to see the consultant who put me on the list and then another year to get it done. By the time they took it out it was massive and they had to make a bigger incision. The surgeon said it was a bit of a fight to remove it. I feel so much better now.

I've had gallstones since 2017, made worse with pregnancy a few years later. They said it needed to come out in 2020 and I am still waiting!

I've been to A&E countless times and I'm no closer. I'm apparently top of the list...

7.5 k and that's just the op!

Just as a follow up, did anyone try to get travel insurance whilst in this interminable wait for treatment?

Also, sorry hijack OP but for those who have had the op, how long was the recovery?

News on the waiting front. GP told me consultants at my hospital ate triaging everyone referred in order of priority and giving everyone a date, in the hope of bringing people forward where they can. However, GP has said they will look into other hospitals and private providers for me to see if they can offer earlier dates.