What’s wrong with me, hospital clueless

I just read your most recent update @elm26and my blood is boiling on your behalf! This is such shameful and misogynistic treatment - notice how they specified that it’s only some women who just have to put up with the pain and learn to live with it, not men. Why? Because men’s pain is immediately taken more seriously, and they are not expected to quieten down and put up with it the way that women are. I know it’s exhausting for you, but please don’t let them fob you off - your partner needs to be a very loud advocate for you right now before your health deteriorates even further. Ugh, I’m just so sorry that you’re going through all of this. I really hope that you get the treatment, care, and diagnosis to explain all of this, as soon as possible.

I am horrified on your behalf OP. This is outrageous. They are refusing to conduct scans that could identify the cause of your anguish? Sending you home with pain so strong you required morphine? I am gutted that this is the state of things.

I know they suggested celiac but then said it couldn't be, I just wanted to let you know that high IGA is only an indicator, they would need to take a biopsy to confirm a celiac diagnosis, so this is another thing they are fobbing you off with.

I'm afraid you are going to have to become a squeaky gate and call every time you are in excrutiating pain. They can only recommend you live with the pain when all potential conditions have been discounted. In this case, they have denied many of the explorations required.

Wishing you so much strength at this time

It’s tough reading what you’re going through so god only knows what it’s like to be living it. It’s unbelievable that you’re being treated like this - because they don’t know what’s wrong. Do you have another hospital you could go to that’s a manageable drive away? It’s really not ok that you’re being left without further tests - surely a repeat colonoscopy, CT and possibly MRI scans should be carried out.

I just came across your post and skim read some of your responses to say diverticulitis and then I saw your last response.

OP I have severe endo in the bowel (everywhere else) and back in 2020 I ended up hospitalised with a bowel infection and they found diverticulitis- I don’t fit any of the criteria to be susceptible. To say it was the worst pain of my life is an understatement. Ended up in hospital for 7 days.
After lots of tests etc colonoscopy they found my bowel was shot to pieces due to my endo which I think triggered or helped my bowel to have diverticulitis. I was passed between the bowel specialist and the gynae team and no one cared.

You need to make sure you haven’t got an infection as this could lead to sepsis. Having diverticulitis can be very dangerous. If you are in lots of pain please call an ambulance do not wait.

For me they finally managed to get rid of the infection but my bowel is a mess. I luckily haven’t had another diverticulitis attack for years but I do need check ups as the symptoms mimic crohns and they’re testing me for that but I know it’s endo in my bowel.
It’s exhausting for anyone to take you seriously.
Please keep safe and go back to hospital if you are in so much pain.

Any updates OP?? Really hope you’re ok ❤️

About 20 years ago , I had similar , was in agony , had scans etc. Turns out they missed kidneys stones on the 1st scan. Never felt pain like it , childbirth was easier and I’ve had 3 children .

Had similar. Had a ct scan for abdominal pain and they told me they saw a mass there so I was really worried thinking I had cancer. They kept me in the hospital waiting for a free emergency slot for surgery for a couple of days (then let me go home for the weekend then back in on the Sunday night) then I had surgery and they found nothing. Then I was in even worse pain afterwards and they wouldn't let me eat in case food was making it worse. Horrible couple of weeks for absolutely nothing!

Yep, Ive had this with various kidney stones, yes it is, no it isnt, yes it is, no it isnt, then gall stones, yes it is, no it isnt yes it is.

It currently isnt.

I would agree with this.
A friend of mine had a lump on one side of her tummy. A scan was done and the sonographer diagnosed an ovarian cyst. It was the size of a small tangerine, apparently. 😮
She went in for an op and was surprised when she was back on the ward so quickly. It seems the surgeon couldn't find it !
She's had no problems since and the lump has gone. Go figure 🙄

As a veteran of stones I can tell you that one day they show up, and the next they dont. Scans are not fool proof and doctors dont have xray vision.

Difficult to judge when op has said she couldn’t keep still and so results wouldn't have been as clear as hoped. But the pain she’s describing doesn’t sound typical for kidney stones so maybe initially it was discarded as a possibility as they searched extensively for other causes

Imagine if it is a kidney stone now like loads of people said and they are too incompetent to diagnose that 😡 well I hope for your sake it is, as treatable and you can get sorted but I’d be so cross!

Have they ruled out a hernia? I know someone who had one attached to her bowel that used to spasm & cause her agonising pain

With the swelling OP have you looked up MCAS?

Another thing I'd what them to look at his Ulcerative Colitis,I have it and when I have a bad relapse it's worse than being in labour(and I've had 5 DC and I have a stupidly high pain threshold)Ulcerative Colitis pain can be unbearable and it can make you really seriously ill.

I hope you start getting better treatment and they find out what's wrong.

That's good, you definitely have to keep still for scans to be any use. When I had my kidney issue they just abandoned a scan half way through because I couldn't keep still due to pain (they made sure they dosed me up really good before they did another scan!)

It's good they are being thorough a d rechecking stuff. Keep positive.

Wow I didn't realise this existed so interesting and yes op h needs to use this,

Thank you for the information 👍

FFS things have moved on a bit

RTFT or at least all the OP's posts.

my mum has diverticulitis and what you describe as the twisting pain sounds like her in a flare up. You need gastro and fast? Gynae won’t do naff all. I also have bowel disease and celiac and the attacks I get are horrific and only morphine controls them. I’d be asking for a colonoscopy aswell to see what’s going on.

"Dr" Google doesn't say you're lying or dismiss your symptoms. I'm so sorry you're going through this OP 💐

Gosh I am so sorry your nightmare continues. You mentioned antidepressants - have you by any chance reduced or come off these? My daughter was coming off sertraline with an advice of a psychiastrist, but as she started to lower her dose she suddenly got severe stomach pain which she unfortunately still has daily several years later.

Some of us mentioned mast cell activation syndrome. If you have ceoliacs (I have ceoliacs) but you are not on a ceoliac diet, the ville in your stomach have been wearing away and you likely have leaky gut. I am guessing then you have too much histamine in your body. My daughter has a diamine oxidase blood test which suggested has an issue with histamine. She also gets stomach migraines.

It is exciting. I'd say the majority of my colleagues (vets) are more interested in problem solving and pondering than the actual patient per se. Of course they care, but the driving force is the challenge.