Gallstone misery 😩 anyone else?

[bambamtam]

Hi
This is my first ever post on Mumsnet so forgive me if I don’t know the acronyms or correct way to say anything! (I don’t even do social media so...) I’ve recently had a really reassuring Google search and ended up reading an old thread on here which made me feel so much less alone, so I thought I’d reach out with my experience and maybe be of some help too, you never know 😬
Since I had a colonoscopy about 6 months ago I’ve been in constant agonising pain, akin to childbirth (been through twice without painkillers, sadly!!!) I would describe it as how I would imagine being stabbed under the centre/right side of my chest under the rib cage and throw up the back at the same point. These attacks have been happening regularly and relentlessly ever since. I have big attacks sometimes daily or with a period of lesser attacks in between. But never a day without. My weight has dropped hugely and I cannot afford to lose more as I’d already lost so much weight in the past few years owing to a gynae issue and surgery. I’m now skeletal, weak, tired, pathetic and scared to eat much...but as hungry as hell!!!! I was already vegetarian and gluten free and now have reduced my diet to one or two items. It’s miserable abd the pain makes everyday life unbearably hard. The rest of my family have to put up with so much. I’m missing out on my children’s important performances and achievements. I haven’t socialised in so long and my friends are out of chat or effort, understandably.
Anyway....that is not a great start to my first post, sorry!!!
I’ve been in and out of doctors and hospitals (plural) with numerous cancelled appointments and scans. Gallstones showed up by chance on an MRI scan for gynae stuff. Eventually my parents offered to pay for further tests to check no other underlying issues as all centred around abdomen. Had CT and US. Now booked into have gallbladder out next Thursday and I’m scared. I had keyhole surgery in 2017 to remove ovary and torted Fallopian tube with adhesiology. It took months to recover and tbh longer to get back to ‘normal’. Now I’m terrified it’ll be even worse this time as I fear the recovery and dietary restrictions. I’m so weak and only 8 stone. Plus adhesions a real issue for me and made worse each time you have surgery.
Is anyone else out there with this misery??
I have been prescribed Oramorph which is excellent as I can’t tolerate codeine and paracetamol is an insult to the level of pain we’re talking about!!!!! Btw did anyone else laugh during labour if offered paracetamol to ‘take edge off pain’ .....I mean, really?!?! I don’t think so. I digress...this gallstone pain is feeling worse though because there’s been no end in sight up until a few days ago when I got my surgery date. My life has been on hold for so long and I hope against hope this operation is simple and straightforward. That’s my hope for anyone else reading this and feeling desperate, in agony and alone. There’s nothing anyone can do to help. My partner tries but I can barely speak to him in the throes of pain. Just try to breathe through it, sit upright and ride it out. Only since being able to take morphine though, and even then the pain is still debilitating for first hour or so. Before that I had ambulances and trips to A&E. writhing around unable to find any comfortable position and grunting like with contractions. Crying with the lack of any relief available and so angry and weak. God it’s so horrible.
My love being sent out to anyone else suffering. Don’t put up with it and be firm about levels of pain and how much it’s affecting day to day life. Insist referrals are dealt with according to severity of pain. If you’ve had trips to A&E that should help. Plus they will give IV morphine of severe attack and that kicks in so nicely it’s like the best thing ever after hours of crippling pain.
I’d like to rediscover my smile and not the only contact I have outside of my family to be with medical staff who I invariably end up crying in front of. Or in a humiliating state of undress, position, conversation and hysterical mood!
I think my gallstones are predisposed as a genetic thing, three generations have had complications and removal. My dad only a year or two ago. But I’m the youngest to suffer, lucky me!!!! I’m 41 yo but feel weird saying that as I really only feel late 20s but face says otherwise. Plus I have a son just started uni so that would be weird.
💖

[RolytheRhino]

Oh dear OP, you've had an awful time. Surgery is scary, but hopefully once it's over you can move on with your life, and recovery can't be as bad as a gallstone attack.

[QueenH]

I had to have open surgery to remove my gallbladder in 2017 (I was 27) as keyhole failed but was back to work in 8 weeks. The relief was amazing and I put on 3 stone within a year of having it out as I could eat properly again. Just hang on in there! I found I couldn’t stomach tramadol but a combination of codeine and paracetamol really did help when I had the worst pain.

[Crimearino]

I had my gallbladder out at the age of 26. Before that I was in so much pain that I would faint when the attacks come in. So thankful it's out.

[Bunnybaubles]

I was thinking about starting my own thread, but if it's ok I'll join yours 😊
I've only just been referred to see a surgeon, my first appointment in tuesday next week. I'm actually quite worried about the whole thing. I have no idea how bad I am or what is going to happen.

I had my first severe attack last year. I was home alone with my baby and I felt just under my breasts tighten. I had this pain before, quite alot for at least a few years and thought it was wind, I'd just always ride it out until it passed.
But this just got worse and worse. I ended up lying on the kitchen floor terrified I was going to pass out with the pain, took me ages to text my DP to come home. He was shocked at how I looked so phoned NHS24 who sent an ambulance car out incase I was having a heart attack. I was mortified, all that fuss over trapped wind but I couldnt stand the pain so I let him phone.
My BP was very high but ecg normal. It was 2 hours before I was taken to a&e by the lovely paramedic lady. By then i just had bad residual pain in my back and chest. I still thought it was wind. A&e doctor told me i had plurecy (despite having no cough, cold, or illness of any kind). So that was that.
I had another severe attack a couple months ago where i begged DP to phone 999. Ambulance came out and treated me like a time waster, it was awful.
Then shortly after I had another one, I tried to ride this one out. After I phoned my gp in tears. I had been putting off going to them because I thought no one would take me seriously and tell me it's just wind. But I knew now it couldnt be wind.
GP was amazing, I told her why I put off coming and when I explained the pain felt like labour contractions in my upper body instead of lower she immediately referred me for an ultrasound, chest x-ray and took bloods.
I dont know the results of the x-ray or bloods. I had an appointment straight after my ultrasound to get them but my ultrasound confirmed gallstones and a thickened gallbladder. So my GP appointment was a bit of a blurr, DR went on about stuff I never really took in but said I'd be getting my gallbladder out and he was referring me to see a surgeon who will send me for an MRI.

That was 2 weeks ago. And what I've written is all I know.
I have so many questions but dont really know what to ask, if that makes sense. I have constant pain in my back and chest, the GP said it's probably from my inflamed gallbladder. Is this part of the gallbladder problem?
I was wondering if you could tell me what to expect at my first appointment, how long a wait it is between the MRI and the date for surgery?
I am so sorry for what you are going through @bambamtam, your experience sounds far more serious than mine! It's awful knowing another severe attack could happen at any moment. (Sorry for the long post).

[bambamtam]

Oh @bunnybaubles that is awful. I can hear your fear and panic. Please don’t suffer bravely...we all feel like we’re going to be told to go home and stop time wasting, honestly. It’s the curse of invisible pain. It sounds a lot like gallstones and on NHS I think it’s roughly 12 weeks but that will vary massively depending on where you are in country - sorry I can’t help much. It’s worth getting blood tests done to have a look at whole area as there are so many symptoms that crossover between conditions. But the pain you described sounds to me like gallstones. If you’re a younger person they will check the thickness of the gallbladder as well as if there’s gallstones. They’ll also check pancreas and bile duct. Does your skin go yellowy? Please call ambulance straight away if it does. The gallbladder is easily lived without so don’t suffer. Sorry if my journey with this is not giving you hope (😬) I’m sure you can get this sorted. Best of luck.
At GPs you must be clear about severity of pain and how debilitating it is, especially with young children you must be a warrior woman. They’ll send you off for an ultrasound and then it’ll be onwards toward operation and relief from there. Good luck everyone. Especially @bunnybaubles
Much love 💕

[bambamtam]

@Bunnybaubles I’m so sorry I didn’t see that you had a thickened gallbladder was and gallstones. Get it out!!!! Honestly. Eat very low fat and small amounts until operation. Soups and salads. Avoid meat and cheese or anything fatty. After operation it’s apparently a huge relief. Surgery is scary but better than the pain. Operation is keyhole and often treated as day surgery. Don’t rush recovery afterwards though and make sure you REST properly. DH will have to pick up slack and make you sit still and do nothing. Good luck. I’ll keep you posted on my operation and recovery this week.

[bambamtam]

@RolytheRhino
Thanks that’s so lovely

[Rosegoldmum]

I had gallbladder removed afew years ago after several attacks. Didn’t know what it was at first, thought I have having a heart attack. Dr sent me for ultrasound, gallstones detected, afew month later gallbladder removed. Was living on baked potatoes, dry toast and apples whilst I waited for surgery, to avoid pain and attacks. Am much better now gallbladder gone. I was worrying about having surgery at the time, but it’s better out & recovery wasn’t too long at all. Less than a week and I was almost back to normal.

[Rosegoldmum]

@Bunnybaubles I had unrelenting pain as if someone was squeezing me tight, under my breast bone. It should ease up as long as you stick to a fat free diet as much as possible. Hope you feel better soon

[QueenH]

@Bunnybaubles my pain came from stones being stuck in the bile duct which meant my liver stopped functioning properly. It can be really, really serious for your health so PLEASE go to your doctor or A&E whenever you get bad pain. When they first diagnosed mine (after several doctors telling me I had a perforated stomach lining, which I didn’t...) my surgery was scheduled for about 6 months later but because I kept having bad attacks they brought the date forward and I ended up having it out about 4 weeks after diagnosis. I also found it more useful to get an emergency GP appointment who can then refer you straight to hospital rather then A&E where you wait forever in triage, but appreciate not everyone’s GP might work like that. It will get better and you’ll feel so much relief just hang on in there and avoid anything fatty or spicy

[Bunnybaubles]

Thanks for all your replies. They make me feel better that there is an end it it! My gp told me to phone 999 when I have my next attack and to tell them I need pain relief. I really didnt think I could do that but they insisted. I've heard the recovery is like getting over a c-section, this terrifies me the most because I had an emergency c-section in july which didnt go so well and recovery has been awful 🙈 (I'm 38, I was always thought I was too young for gallstones).
Thanks @bambamtam I'd love to hear how you get on. It is good they can do this with key hole surgery.
DP is already amazing with anything really, kids, housework, family time, couples time, even before the gallbladder problem so I know I have good support after the surgery. My DP's said they'll help with childcare too which is muchly appreciated!!
@Rosegoldmum @QueenH thanks for the reassurance, I'm glad yours is all better 😊
@bambamtam goodluck with your surgery. I hope it makes such a difference to your quality of life! Sounds like you need a break

[Bunnybaubles]

Goodluck with your surgery today @bambamtam xx

[bambamtam]

@Bunnybaubles awww 😊 that’s so sweet of you to remember. I’m out now and surgery went well. Four incisions and one less organ!!! Surgeon showed me photo of my super large gallstones (pretty grim looking things) and I’m glad to be rid of them. Pain is manageable and I’ve already eaten more than I have in weeks. Bit woozy but will update more when less so. Thanks again I’m touched xx

[Ledkr]

I had mine out a couple of years ago.
Best thing I've ever done and a super quick recovery.

[Bunnybaubles]

@bambamtam that's ok, I was thinking about you and wanted to wish you luck. Your surgery was booked for just after my 1st appointment with a surgeon
It's brilliant to hear your surgery went smoothly and you aren't in too much pain. Must've been strange to see your gallstones tho! Now it's just recovering and being normal again to look forward to.

I'd love to read your updates on how you are getting on with your recovery. Apparently my blood test which was done straight after my last attack showed raised levels of something to do with my liver so I had to get them repeated. If they are high again I have to have an MRI, i think he said it means i could have a stone lodged somewhere.

My surgeon wasnt the best tbh, he hated that i asked questions and just repeated "yes yes, it's your gallbladder, it must come out" 🤷‍♀️ So I'm still not sure about anything!

I hope you aren't too uncomfortable on your first night and you manage to get some sleep. Sending you

[Bunnybaubles]

Hi @bambamtam I was thinking about you earlier and wondering how you got on with your recovery.

I'm still waiting my blood test results taken a couple weeks ago. Had to chase them up. Turns out they've been sitting for over a week waiting for the surgeon to get round to looking at them. That was last week.

I hope you're recovering well and feeling much better

[bambamtam]

Hi @Bunnybaubles so lovely that you thought of me, thank you. I’m now 2 weeks post op and whilst it’s taking me a bit longer to recover because I was quite weak beforehand I can honestly say it’s much better than gallstone misery!!!!! I’m feeling more ‘normal’ and no more nights writhing in agony. My incision wounds are mostly healing although the surgeon pulled my tummy button stitching a bit tight and as a result it’s still very puckered and swollen in a weird shape!!!! But tbh I didn’t spend much time parading about in crop tops or bikinis before so I think it’s a fair price to pay!
All in all I think having my gallbladder removed was the right decision for me and I’m looking forward to a brighter future. I’m having to eat a very healthy diet and I’m enjoying it. My family peer pressured me into going to pizza express and that was my only one bad reaction but I am confident it was just too soon as opposed to never being able to eat pizza again. I hope 🤞
I am sadly very familiar with your experience of poor admin with test results - you’re doing all the right things and I do hope you can get a surgery date sorted soon and then you can be pain free too! Sending you my new found strength and I’ll keep in touch to see how you’re feeling and any progress. Take care and keep pestering your doctors and those VIP surgeons!!!!!! Xxxxxxxxx