Severe pain, told to “forget about it”

[Glitterballofdreams]

I’ve been experiencing pain in my abdomen for two months, it’s increasingly gotten worse. I saw my GP on 3 separate occasions, had blood tests and was referred for an ultrasound.
Last week the pain was so severe I went to A&E, I was kept in for two days and had an ultrasound & blood tests. Doctors couldn’t find anything wrong and discharged me with painkillers.
i attended the ward twice more in agony, had a CT scan and two more loads of blood tests. All of which were clear, yet I am still in severe pain. Alongside this I have become very dizzy and have blacked out twice (I am anaemic and I fear all the bloods they took have made this worse).
I visited my GP again today as I cannot function with the pain and dizziness, I am bedridden and am having to have family members help me look after my children. My GP told me today to forget about the pain and it will go away.

i am so upset, and fed up. I know that it is very reassuring that the scans showed nothing, yet why am I still in so much pain?!

has anyone had any experience of abdo pain that went away?

Sorry not read all the replies but have you heard of sphincter of oddi dysfunction? That’s generally on right side near ribs. I have that, alongside chronic pancreatitis, originally caused by a rogue gallstone. Assume they’ve checked you for gallstones and pancreatitis (latter you’d have high CRP / other inflammation levels). I can understand your frustration as it took 5-6yrs for my chronic pancreatitis to be diagnosed and I was in terrible pain daily, and ended up on a fentanyl patch. Keep pushing, as hard as it is.

I don’t have any advice but … I was in hospital recently where a woman had lower abdomen pain in the bed opposite and just after I got on the ward a doctor visited her and basically said there was nothing they could do for her coz they couldn’t find the problem of the pain and all she could do was go home … but then when the woman who was doubled up then said she would go home they made her sign a letter to say she was discharging herself 🤔
I then realised after I had my op etc that they basically wanted you up out of the bed so they could get you out of it ready for the next patient . They had no interest in anyone bed blocking so finding out the cause of this woman’s pain wasn’t as important as the bed. It’s just awful 🥹
I hope you get to the bottom of your pain .

I had my gallbladder out ..that pain was worse than childbirth
I had to go to hospital in an ambulance twice because of the pain .there was no carrying on and functioning for me .
Some of what your saying does sound similar to how I was with my gallbladder.
But the extent of bleeding is not normal and needs sorting out ,you should not be left putting up with that .
I wondered if there is two issues at play here ,and that is what is confusing the doctors,I wonder if it's gallbladder and a separate gynecological problem .
Keep pushing, don't be fobbed of

Things to say to your GP - this is severely impacting my ability to function. This is severely negatively impacting my life. I am in severe pain the majority of the time. I feel my symptoms are not being taken seriously. Could you tell me what the NICE guidelines for these symptoms are please? (Or better still, research this yourself before the appt and tell them what you expect!). I’m angry on your behalf.

You can get acalculous cholecystitis - inflammation in the GB without stones. Your pain sounds very much like biliary colic; I suspect there’s probably some sludge/gritty material which is passing through the bile ducts - it’s this that causes that sharp stabbing colicky pain and the distribution you describe is typical.
If it isn’t settling then you’d need an MRCP (MRI of the biliary system) or an ERCP (like the gastroscope you had for the hiatus hernia but they look further round and inject dye to image the bile ducts) to diagnose - neither iirc can be requested from primary care so you’d need an upper GI/general surgery outpatient referral. In the meantime - decent pain relief - I’d try antispasmodic too like buscopan; and if not contraindicated potent NSAID (naproxen) and avoid fatty food completely as will aggravate.

Here's the NICE guidelines for diagnosis & management of endometriosis - your GP should be working towards these - have a read & specifically say the NICE guidelines advise A, B or C - please will you refer me.

https://www.nice.org.uk/search?q=Endometriosis

Here's the NICE guidelines for gallstones.

https://www.nice.org.uk/guidance/cg188

I wonder if it's a stomach ulcer. My husband had similar symptoms, was in extreme pain and doctors thought it was his gall bladder. Had the scan which was all clear. Also looked at the liver, again was all clear. Wasn't until he had an endoscopy (camera inserted into his stomach) they found the ulcer.

I would go to a chiro and get your ribs and that area checked - I get probs under my ribs maybe you are having muscle spasms

Sorry this is happening ? Could it be sphincter of oddi dysfunction.. ask your GP

@Glitterballofdreams i tried gluten free due to similar issues but stopped as pain came back, my husband convinced me to try again and i realised that i had accidentally had barley lots of times in sauces etc that you don't expect, a year on i now rarely take painkillers , this is in comparison to a year ago when i was on 8 strong ones a day! If it is gluten it can take many months to clear up and you have to check everything you are eating

OP so very sorry to learn of your situation, your treatment has been shocking.
If it were me I would be paying to see a specialist privately. Please don't be fobbed off by your GP, as others have said get a second opinion.
This is your life OP and you deserve better.
Good luck with getting it sorted.

This is a good post. I'd go back to GP and specifically say you want tests to rule out endometriosis so you need a referral for a laparotomy.
If they say things like long waiting list or come back in two weeks etc, say you need the referral now and would prefer yo be added to the waiting list ASAP.

I'd also be prepared to say, in very calm tone: 'if you refuse the investigation I've requested, I will raise a complaint.'

@Glitterballofdreams so sorry you’re going through all this pain. Sounds horrendous 😢
couple of things

1. were you sterilised with essure?
2. keep pushing for a gynae appt to check for endo, not just in pelvis region - a colleague recently had surgery where endo was in her lungs and all throughout her abdomen
3. does anything make it worse or better

I really feel for you OP keep pushing and pushing don't let anyone tell you you are imagining the pain.
I spent 15 months bedbound from pain. The pain was unbearable. I was pretty much ignored and accused of making it up. When I finally had a hip replacement they found a congenital deformity in my pelvis that was a horrendous mess that nobody had picked up. It should have been picked up when I was a baby. I was basically trying to walk on fractures.

You don't know that's what it is. Asking to see a specific specialist could put them on the wrong path.

@Glitterballofdreams op go back to the gp with a full list of symptoms, and any other factors and discuss why the scan might of been clear if your pain is so bad. There's clearly something being missed and point this out to them. Pain like this doesn't just exist for no reason and explain the level of pain killers you're expected to take to manage this is also a concern for you. By all means if you think you have a certain illness , ask the question of how that illness shows itself and what tests reveal this but keep an open mind to ensure all avenues are explored.

Oh my gosh!! That’s crazy!

Sorry, I've not read all comments, so don't know if this has been suggested - but maybe IBS? This doesn't show up on tests but is extremely painful and debilitating - my DS had it, it took a long time to diagnose, pain killers didn't work, but was finally referred to the right consultant and got treatment that worked. I so hope you are able to get something sorted soon

Thank you all for your responses.

I tried a gluten free diet for several months which did not make a difference.
I have not been eating much, and have a low fat diet but what I eat has not made a difference to the pain.
I have tried buscopan, omeprazole, etc with no improvements.

Little update, I have an ultrasound scan later today, and a CT next week. The GP has given me ibuprofen for the pain, which does nothing.
The pain is now present when touching the right upper abdomen, whereas before the pain was only felt inside, if that makes sense?!

Hoping and praying for some answers, else I will have to push for MRI and further investigation.

Thanks again for all of your time and support x

It's so upsetting reading how difficult it is to get taken seriously by our doctors. I am pleased you have finally been taken seriously by a different GP.

Just to add my 2p: my endometriosis was undiagnosed for years despite pain, GP appointments and scans, and only found during an exploratory laparoscopy for fertility problems. They do make you feel like you are going mad.

I haven't read the full thread yet, but I would definitely get a second opinion.
My old mum was in agony a couple of years ago turns out she'd got a H-Pylori infection.
It caused severe abdominal pain and it didn't show up on anything at first. She had to keep going for tests upon tests and then they found it eventually, as it was microscopic, so wasn't easily detected.

I remember my dad being in pain and turned out he had a peptic ulcer, so all his food had to be thoroughly cooked, and bland with no spice, as he was scared it would rupture.

I hope you get the answers you're looking for.
Hugs to you 🫂

I have had about 15 years of cyclical stomach pains now. And, yes, back and forward to GPs and A and E/ urgent care - did not get a scan until DH came to an appointment (it was a male locum GP as it goes ) which found gallstone. Had this whipped out but still have stomach issues(minus the vomiting I had with gallstone). To be fair the gastro consultant did say my symptoms were not classic gallbladder symptoms.

Back and forth again I go to GP to be told to keep a diary and take mebeverine. I am bedridden for one day of every month, on average.

I have had a private gynae referral to look at endo. If that's what it is , it began in perimenopause and I will be in my mid 50s at diagnosis!

I hear others' stories and empathise - it's just awful. I don't think people get how debilitating stomach pains are . I have never even had any of the oscopies , MRI or CAT scan. Pretty much patted on the head and given painkillers when I went to hospital (93.8 billion times).

Not RtFT but it could be pancreas related?

I’ve heard this issue re: hysterectomies before but not re: mastectomies!! That’s shocking - keeping a boob for a fictional man. So awful.

I heard a clip from Naga Munchetty the other day where she said there are certain phrases you need to use to get the GP to take you seriously.

The one I can remember was, "this is seriously affecting my quality of life."

The others were around affecting your ability to work, care for children etc I think...