What’s wrong with me, hospital clueless

@Greybeardy That's all very fine from a medic's point of view, and is probably how such things are dealt with in the end. However, it is just so unfair that this is not communicated to the patient. It's as if patients are not to be trusted with any information about the way their issue is being treated, especially when it seems to the patient like nothing is being done.

Communication!!

How little is being done? In 24 ish hours she’s had two ultrasound scans and a CT scan in addition to blood tests and urine samples. I’d say that’s a good start!

@elm26 Apologies as I’ve only read your opening post & your many updates, but has anyone suggested pancreatitis? The way you described the pain going into your back is usually associated with it, & my God, I wouldn’t wish that pain on my worst enemy. It’s hideous, & you feel like you’ll do anything to just make it stop. Hope this afternoon brings better news for you. Hugs to you & your DH 💐

If you get no diagnosis and have no reduction in pain and discomfort, maybe don't go home without PALS involvement. You and DH seem to have done all you can. However, it's Friday evening now and do PALS work weekends?

This is terrible, and it's actually quite frightening that so little is being done to try and diagnose you, and you are made to feel you are an inconvenience. Well it's frightening for those going in for treatment, diagnosis, tests etc. You'd wonder what is the point?

The term is Retrograde Menstruation - just had to look it up as it was 16 years ago!

OP you're getting quite a lot of unhelpful suggestions on here by people who don't really get some of the subtleties of medicine. There really isn't anywhere near enough information in your posts for anyone to be making terribly meaningful suggestions. The imaging you've had done already sounds good - even if it's not the usual first line modality for a condition there will usually be at least some clues pointing to which organ system has a problem. It's nigh on impossible to get through ED without having inflammatory markers, U&E and quite often liver function checked so the people suggesting that aren't really helping - those will usually show subtle stuff at least if there is something important going on. Just occasionally it really isn't possible to make a diagnosis immediately, and just occasionally 'masterful inactivity' is the right thing - rule out the immediately life-threatening stuff and attempt to normalise things (for example taking the catheter out) and see what happens. It is unpleasant and frustrating to have had such severe pain, but when all the sensible first line investigations don't point to anything very obvious sometimes time is what's needed to point you all in the right direction.

Hi Op - years ago when my eldest was around 5 months I had my first period after pregnancy. A few days in I was in the most excruciating pain ever to the point of passing out and an ambulance called. It took the hospital days to find the cause and it turned out my menstrual blood had entered my stomach (through the opening of my fallopian tubes) and that caused this massive pain (crazy I know!) I ended up having to an operation to clear it. Could that be a possibility if your period was really heavy?

OP, I would recommend running everything through AI and use this tool here: https://dxgpt.app/?gad_source=1&gad_campaignid=22143667638&gbraid=0AAAAA-skLxti09fJj5l8IANh2Mxj6DV8O&gclid=Cj0KCQjw1ZjOBhCmARIsADDuFTB_lbA49MSgs-NPcclKIsThjU--slfyl27QeAi51bUZcjfkqMTQ8Q4aAg-2EALw_wcB

This tool is a specialized LLM developed for rare disease diagnosis support, ie considering everything that is and isn't textbook. Write a prompt like you are the doctor, go through all existing medical conditions and every symptom you have - even minor.

It gives you a really nice breakdown of what symptoms match what conditions and sometimes shows where symptoms combine.

For example, I believe I have EDS but needed to align all the symptoms I have to a holistic picture - put it together and it gave structure for my GP to investigate. It's more credible than generic AI that's not specialized on medica data.

if op is still there she’s been in A&E for more than 24hrs so you would hope she had had a scan or two when she’s in such pain and can’t pee. Having recently sat in A&E for 22hrs with gall bladder pain needing morphine - there is unfortunately a lot of fobbing off as A&E departments can’t cope with the sheer volume of patients. Sadly I think some A&E staff have become aclimitised to patients sat in severe pain for long periods, it’s happening so often now through lack of resources it’s been normalised for them.

So you’ve managed to pass some urine to do a dip? I had this exact same scenario a couple of months ago. They wouldn’t scan me as the very small amount of urine I could pass was clear. It was a back spasm. Within a few hours of diazepam and codeine it eased off

So sorry you are going through this. I had very similar and it turned out to be kidney stones. I had numerous emergency admissions in agony, lots of tests, found nothing. There was blood in my water but they kept blaming it on periods, even though I knew it wasn't that. The pains were intermittent so they kept discharging me, even cancelled an ambulance to my work after a third attack. A colleague ended up taking me to A&E, by this time my pee sample was the colour of red wine. A further dye test revealed a kidney stone. Despite the pain I was just so relieved they finally found something! I hope you get to the bottom of this, OP. I can truly understand what you're going through x

I think you need to ask for an mri with contrast of your kidneys.

if you can afford it or have insurance - I would work out which kidney specialist works for the nhs at the hospital you are in that is also private and ask for a phone consult while you are in A&E. It’s likely to trigger them to visit you in A&E if they have a shift on while you are there but if not a phone conversation would help and if they are concerned they will put their nhs hat back on and ask colleagues to do x, y and z.

it can’t be a coincidence that the pain happened and since then you can’t pee

Presumably they won’t scan your kidneys again because they were scanned
last night when you had the CT and nothing concerning was identified.

You’re giving the impression you’re being fobbed off but they’ve clearly taken your symptoms seriously as you’ve had a lot of imaging in a short space of time.

It is often difficult, both for patient and medical teams, when scans/bloods/urine samples are all coming back normal. I assume the discussion around ‘contraception’ was in terms of managing endometriosis rather than imminent concern for pregnancy.

As I said the not able to pass urine will keep her in but pain alone is normally managed at home.

I don't think they show stones. If the stone is small enough, or has moved by the time they get you in for CT, they also might tell you they can't find anything. It doesn't mean one wasn't there. A kidney stone can be as small as a grain of sand, and still be agony if it's in the wrong place.

I had this and it was some of the worst pain I've ever felt. It took fentanyl + morphine to even make a dent. I had the inability to pee too. They gave me something to relax my urethra, and then about two hours after the onset of pain I could suddenly pee again and felt instantly better. I was only able to get into CT about an hour after that, so they never did find the stone. Your case sounds similar. The difference between my doctors and yours seems to be that mine were happy enough with the uncertainty. They were content to diagnose a stone and send me on my way once I felt better. I had a repeat performance a few months later that pretty much proved the theory.

I hope you find a solution 🌺

Bless you, hang in there

My daughter went down in July with similar and had to be given morphine in a&e before being taken to a ward

She spent 3 days in hospital with me on the floor next to her (shes and adult but needs 24 hour care)
Her ct scan showed some fluid in her abdomen but as soon as she was declared non surgical she was turfed out so fast my head was spinning and poor kid vomited everywhere on the drive home

For her it turned out she can't have gluten and it was causing issues with her bowel but all they cared about was if it was appendicitis

It’s not about a lack of empathy it’s about what actually happens, which is I assume what the poor woman in hospital is interested in. The idea that she will be more comfortable in hospital than at home is not my experience at all.

Did they scan your gallbladder? It sounds like classic gallstones although not being able to pee would be unusual!

That’s not a minor issue at all. I was responding to the idea that you can’t go home with pain meds, as that’s absolutely standard here, with kidney stones.

Op ask them what they think it is if they’re so certain it’s nothing serious

Pancreatitis?

Sorry you are still not sorted - I would go through this list with them and work out what they have ruled out and why:

Inability to urinate (urinary retention) is a medical emergency if it happens suddenly and is painful
. According to the NHS and associated trusts, the main reasons for being unable to pee or having difficulty emptying the bladder include:

Physical Blockages (Obstructions)

• Constipation: A full bowel can press against the bladder and urethra, physically blocking the flow of urine.
• Kidney or Bladder Stones: These hard lumps can block the tube (urethra) that carries urine out of the body.
• Urethral Stricture: A narrowing of the urethra caused by scar tissue or injury.
• Vaginal Prolapse: When pelvic organs (like the bladder or womb) drop and press against the vagina, it can hinder urination.

Nerve and Muscle Issues

• Nerve Damage: Conditions like multiple sclerosis, Parkinson's disease, or spinal cord injuries can disrupt signals between the brain and the bladder.
• Weak Bladder Muscles: Aging, previous over-stretching of the bladder, or surgery can lead to muscles that cannot contract strongly enough to expel urine.
• Fowler's Syndrome: A condition primarily in women where the urinary sphincter muscle fails to relax properlly

Other Medical Factors

• Medication Side Effects: Certain drugs, including some antidepressants, nasal decongestants, and antihistamines, can affect bladder emptying.
• Infections: Severe urinary tract infections (UTIs) can cause inflammation that makes peeing difficult or painful.
• Recent Surgery or Childbirth: Use of anaesthesia during surgery or physical trauma from childbirth can cause temporary retention.
• Dehydration: While not a blockage, severe dehydration can lead to the body producing very little urine.

Immediate Action
If you are completely unable to pass urine and your bladder is painful, seek immediate medical help via NHS 111 or an emergency department, as this can lead to kidney damage if left untreated.

Kidney stones are horrifically painful, my labour pain was more bearable.

You can ask for another medical team for a second opinion, according to Martha’s Law this is doable. You need a second opinion. Do not leave until they can confirm what has happened and why.

I was admitted to hospital in 2009, hadn’t got a clue what was going on. I felt as though I’d had a stroke down my right side, horrendous headache, I was admitted into hospital via a G.P visit. They did nothing, the following morning the new knob jockey with his student minions basically said “nothing going on here” the Dr from the night before had me down for an ultrasound the next day, knob jockey boasted to the minions, if you want a scan have your G.P arrange for it, it can come out of his budget “ 😳

When you are so poorly and scared it’s daunting. Do you have someone that can convey these requests for you? They need to be firm, don’t let them discharge you without answers.