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?

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 .

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

Faecal calprotectin came back high and quite a lot of blood in it, they won’t repeat colonoscopy that was done 2 years ago due to fact that it’s likely to be the diverticulitis they saw the first time around getting worse, they wouldn’t even come and see me on the ward they refused to take me off of gynaes hands.

I waited all day yesterday for a repeat scan of my kidneys but got to 7pm and then they said it would be today then gynae came do see me around midday to tell me that urology had refused to scan me again so no repeat scan was happening and I was being discharged (I needed oramorph 3x in the night to get the twisting pain under control) but when I argued this they said it’s bank holiday weekend then dr strike so I am likely to spend 5 of 6 days sitting around any way, I packed my stuff in tears, waited for them to prescribe me 5 (?!) diclofenac and after being told by the gynae yet again that unfortunately some women just don’t find out the cause of the pain and learn to live with it as well as giving me a website about 10 steps of learning to live with and manage pain with no obvious cause (I think anyways I’d stopped listening at this point) my DH turned up and took me home to be with my babies. I’m in bed sweating with the twisty pain but just topped up co-codamol and have a wheat bag so hoping for some sleep.

Thank you everyone who’s been so kind the past week xx

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.

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 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

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.

Have you been having a low fibre diet @elm26? That can help a diverticulitis flare. Bowel issues are awful. I really thought I'd relapsed in my IBD and it turned out to be constipation. I hadn't thought it was because I was going to the bathroom frequently. But my bowel had been retaining stool because of the discomfort.

It really is the most painful thing and given that you've been on so many opioids it wouldn't be at all surprising, even if you've been taking some laxatives.

Whilst I mainly feel sorry for the OP, I also feel sorry for the gynae team. Looks like they've been (I suspect desperately) trying to get the appropriate teams to further investigate the OP for non gynae causes, and are hitting a total brick wall. It's bloody awful when you know that you aren't the team with the right knowledge and skills to help the patient, you're begging the right team to take over, and they just won't bloody listen. Though obviously a bigger nightmare for the poor bloody patient stuck in the middle.

can you go to another hospital, sending big hugs the treatment is totally unacceptable. I am so sorry the NHS is just broken and I feel sorry for you and the doctors and nurses who can’t give patients the right care as the system is so broken and there aren’t enough resources.

That’s so interesting about elderly doctors. Seems to me they’re all espousing (with some exceptions like you say) from the same textbooks they wrote 159 years ago, so I’m shocked they don’t revere older doctors the same

I dont want to scare you, but diverticulitis needs to be taken seriously. I have had it for a few years. I started with abdominal pain last August. Felt nothing like my usual diverticulitis pain. I was ill for months. In November I started vomiting, a new symptom. Dr sent me to A and E. They finally did a CT scan. My large intestine was blocked and twisted due to my diverticulitis. I was vomiting faecal matter. I had an emergency laparotomy and a colostomy the next day. I am part of a support group, the number of people who also have colostomies due to diverticulitis is staggering. I never knew it could lead to this. Please keep an eye on your diverticulitis.

I also second trying a different hospital. It may even help you to be able to go in there fresh and know what to ask for and not let them fob you off. Get your DH to speak for you, as annoying as it is not to be listened to as a woman. 💐flowers and unmumsnetty hugs for you :) xx

Don't hesitate to to call an ambulance again if it becomes necessary. It's a junior doctor strike not a consultant or surgeon one.

Hardly anyone cares about old people, no matter who they are. They are sort of looked at as 'Why are you still living?' It's awful.

OP this is just awful. I’m so sorry. To refuse to scan you and run standard tests when you are in so much pain is breathtakingly negligent.

Telling you you have medically unexplained pain when they had refused to run the full battery of tests is obtuse in the extreme. Plain thick, actually, but more than that, it’s dangerous. This should only ever be a diagnosis of exclusion, yet they have refused to run the tests that would exclude all potential medical causes.

In your shoes I would be making the biggest almighty fuss that hospital had ever seen. I’d be onto PALS telling them to sort it within 24 hours or I’d be going to the ICB, my MP and the media. And they’d be damned sure I meant it. I had to do similar on behalf of my elderly father recently and it got things shifting, though I’m sure I’m thoroughly detested now. You shouldn’t have to do this, of course, but by God they’re negligent bastards.

This is awful 😥 and scary for you x

My mum has diverticulitis and a couple of years ago she experienced what it sounds like you’re going through. In the end it turned out one of the diverticulae had ruptured and she had an infection from it. She ended up having emergency surgery where they cut away the section that had ruptured and they gave her a stoma. I believe they diagnosed this with a CT scan - I can see you had a CT scan - did a rupture get ruled out at all? It was years of pain prior to this and a few weeks of the agony before they got to this point - it was very disappointing.
sending well wishes OP it sounds like you’re being to hell and back <3

OP surely if they’ve found blood in your stool you should be straight in for a colonoscopy to screen for bowel cancer?! If you went to the GP with blood in your bowels you’d be on the 2 week track for screening! I would get yourself to a GP first thing on Tuesday. Better yet, go private! I’ve found the tiniest amount of blood and my private healthcare offered me a 3 day track to screening!

At this point you really need to try another hospital and with high faecal calprotectin levels you need to be asking them to rule out bowel cancer, especially when there's rising levels of it these days. I really hope another hospital will look at things with fresh eyes and a will to find out what's wrong, though the bank holiday weekend won't help unfortunately.

I hope no is still defending these doctors, this is beyond reasonable.

Im so sorry. I would also go to another hospital, I know you shouldn't have to.

Poor you OP. Raise a complaint with PALS.
Say something like 'I’m concerned that despite significant ongoing abdominal pain and abnormal results (high faecal calprotectin and blood in stool), there was no gastroenterology review and I was discharged without a clear plan. I also felt my symptoms were dismissed. I would like this reviewed urgently and to understand what follow-up or further investigation should happen.'

Jesus Christ. It’s like watching medical misogyny in real time - I’m so sorry we’re just watching while you’re living it, @elm26 . I can only imagine how helpless you feel, but unfortunately, this happens - a hospital is negligent, like yours is being, keeps discharging you without running necessary tests, and then what? Wtf are you supposed to do? Either go back to the hospital and be made to feel like you’re faking (that’s disgusting of these doctors, btw) OR what, stay home and become addicted to co-codamol whilst waiting 42 weeks for an outpatient gastro appointment? (My friend had out of control Crohn’s, I think - he’s horrifically ill, and they’re basically telling him even an urgent referral to gastro is 16 weeks here in Edinburgh).

If you have another severe attack, back to the hospital you go, tell them from minute one that you have diverticulitis already and this could be a very serious exacerbation or infection. Hopefully, then you’ll be put under gastro and they don’t fuck around nearly as much as gynae does (why is it that the department that’s supposed to be just for women is often so fucking misogynistic???).

I’m so, so sorry you’re going through this, OP. Please tell your DH to write down doctor’s names, so that when you’re finally through this crisis and can actually put in a PALS complaint, you can name specific doctors. If you can’t, at least write down the time that something happened (like the gynae consultant dropping your arm repetitively on the bed????) as that will show who the provider was in your notes (I hope).

Please DM me if you need some support (I’ve DMed you before; you might not remember as I know this hospitalization has been a nightmare for you). 💐

I'm so sorry you are in this situation and back home again. If you end up back in again, please say " I have asked for x, y and z test and to be referred to gastroenterology. Please note in my records, that despite my requests, this has been refused." That worked wonders for me when an F2 in A&E was arguing with me that I did not have a broken back and did not need a back XRay. Dear reader, I had a very badly wedged T12.

The other medical disciplines / wards are probably already full with men getting appropriate treatment because there wasn’t a gynae team involved to fob them off with a ‘10 ways to live with undiagnosed pain when you’re a woman’ leaflet.