What’s wrong with me, hospital clueless

[elm26]

Yesterday at 1pm, I put my 6 month old on the rug with his toys and went for a wee.

As I was walking back I had a sudden severe pain in my right side radiating into my lower back and up to my shoulder, I was in agony.

I called DH who was luckily only on a job 15 mins away, he came straight home and took one look at me and called ambulance, I was shouting out in pain they gave me gas and air and morphine.

I had an emergency CT when dye last night and also have a catheter as lost the ability to wee. Nothing showed on CT, they got me settled on morphine and today I’ve had a transvaginal scan which shows ovaries and womb look normal.

Gynae can’t find a reason so they’ve stopped painkillers and just giving me paracetamol but somethings wrong I feel like somebody’s twisting my insides. The gynae consultant was horrible and said the surgical team will come see me if they think it’s worth it?? So I’m waiting for that if they come.

I’m in so much pain and genuinely scared they’ll send me home not knowing what is wrong with me.

Has anyone has anything similar?

Thank you for the update. I hope you get some answers tomorrow.

Home?

Wishing you well op and hoping for answers.

Deleted
my mistake

Sorry ignore this and only read the first page of your comments!

Sounds like you're getting somewhere now, but what a bloody awful journey 😒

I hope they find the cause soon.

I'm so sorry to hear you're going through this. It sounds awful. 😔
I honestly read your comments and thought it sounded like what my mum had.

It didn't show up on any scans, so they had to do a microscopic examination biopsy, and they discovered she had H Pylori (bacteria that infected her stomach lining). She was in a lot of pain, and ended up getting treatment and opting for a stoma bag, which helped her massively.
@elm26

I had a colonoscopy a couple of months. The stuff they gave me to drink was foul. The only way I could drink it was to add this elderflower cordial (normal squash wouldn't have been strong enough):

https://www.tesco.com/groceries/en-GB/products/264510637?srsltid=AfmBOoqVs8WyxlUNVZBvVasleuyCDnkDlDtwwl6MHKIW1akz07mQ0k2H

I hope it goes well. x

I had H pylori. I was lucky that my gp tested for it when I went in with stomach issues.

You can test for it with a simple poo test.

They are not doing a colonoscopy now as I had one 2 years ago which showed diverticulitis and IBS. They have asked me if I’m in a domestic abuse relationship and trying to avoid going home (I am most definitely not thank god) and told me that in a small percentage of women they can’t find the cause of pain and we just have to learn to manage/live with it. I woke up 3 times in the night feeling like my insides were being twisted and needed morphine and heat patches. Pain management team are coming to see me, DH is on his way up to advocate for me he’s panicking they’re going to send me home for him to have to call an ambulance again.

I cannot remember if I updated that it happened again on Sunday night, they had to clear the room and suction my throat of sick to stop me
choking, they put tramadol through my cannular and I was hallucinating that my Nan and Grandad were sat with me and holding my baby boy.

Everything feels like a big blur of pain, morphine, different drs and plans/plans being cancelled. I just don’t know what’s wrong with me. I miss my babies and my DH and I want to go home but I also don’t want to collapse again when pain gets too much.

I gave a stool sample for a calprotectin? test yesterday, are they able to test h pylori from that does anyone know?

Yes my dad also had this, not the DV question!

But basically, cant find whats wrong, cant answer your question, cant diagnose you, you'll have to go home until another episode. He has these about 3 times or twice a year.

I find it baffling. How can they not see anything.

Make sure you ask them this

What was the outcome of the investigation/op then?

@likelysuspectI feel for your dad it’s awful not having any answers. I drive, I have 2 small children, what is an “attack” happens when I’m on my own like I was the first time or worst still when I’m driving?

I also have an undiagnosed autoimmune disease, that comes and goes. I swell up, my lips, my eyes etc and then I’ll go into what they call “remission” from it for a couple of years then it’ll come back. They can’t tell me what that is either.

Exactly its dangerous.

I’ve attached some photos of my random swellings, I’ve labelled them as sensitive in case people don’t want to see but wondering if anyone can link any of this all together or has similar experience? I’m desperate for some answers

No advice. But you’ve done your best to advocate for yourself. I hope you get answers soon. You’ve done nothing wrong. How scary for your DD6.

Have you been anywhere recently where you might have been bitten. I saw a story once about someone bitten by a sandfly on holiday and the hospital struggled to diagnose them.

This may come across as a silly suggestion, but right now as the doctors don't seem to be any further forward with finding out what is wrong with you,

it may be helpful for your dh to read thru this whole thread - I can't think of anything on it that he couldn't read ?
and he could write down all of the suggestions / guesses that have been made to you by the good people of MN and ask the Doctors if it could be any of these suggestions.
and when they say no to any of the suggestions, he can ask why it is no.

The reason I suggest your dh does it is because you are not well enough to do it yourself and being on medication you may not read every suggestion right - am I putting my foot in it now ?!

I know you are missing your children and dh and being at home, but I do hope you are not sent home yet.

Have you heard of Mast cell activation syndrome (MCAS)? Seeing the pictures you’ve just shared made me think of that.
Sorry you are in so much pain.

Hello,
I have sent you a private message. With details of Vasculitis UK. I am not a medical doctor, however I do have awareness of Vasculitis and the rare diseases. I agree with other posters. Note down your symptoms over this period of illness and if possible past symptoms.

What?? Are they unaware of how things can change or develop over 2 years? Just because a colonoscopy showed X two years ago doesn't mean it won't show something else now!
I am so angry for you, they're basically saying tough luck you'll just have to put up with it because you're a woman and some women have unexplained pain (probably because their doctors don't bother to investigate properly)

I agree with the suggestion to get your DH to list every possible condition suggested here, ask if they have considered it and if not, why not.

Several decades ago when I was teaching in rural India I collapsed with abdominal pain. It wasn't gynecologically related as I had already had a full hysterectomy and oophorectomy and appendectomy (as it had endrometrial cells on it). The rural hospital couldn't find anything and sent me home after a few days. When it happened again, I was put in a bigger hospital in Delhi for several days and again, they couldn't figure out what it was. Each time it would seem to die down, but I feared the attacks returning. I came back to the UK and unsurprisingly had another attack. This time I was sent to the Tropical Disease Hospital (as they thought I'd perhaps contracted something rare in India), and despite being there for about week, nothing conclusive was found. It never really returned in terms of the painful attacks, so I'm no more the wiser as to what it was. And I don't know how this might help you at all, and I do hope yours gets sorted, but I think sometimes doctors can't find out what's exactly going on.