To be angry that the NHS doesn’t take pain seriously?

[LilyJosephine]

AIBU to think that the NHS is regularly dismissive of pain, especially if you are a younger woman? Maybe I’m biased as I’m a regular on the infertility boards (have name changed) where it seems like a lot of women are struggling with a late endometriosis diagnosis (and so now fertility problems) where their pain was dismissed for years.

But now I am in the exact same situation but with my back. After 2 years of extreme pain and having been told by a muscular skeletal specialist (whom you have to be referred to first by your GP as they gatekeep further referral/MRI’s) that there was no way I had spinal stenosis, as I was too young and it’s not genetic 🤷‍♀️ (my parent has it); and that I couldn’t have an MRI as she was sure it was just disc degeneration that everyone gets as they age. She was totally dismissive. Now guess what I’ve just been diagnosed with?

Finally managed to find a sympathetic GP (young male foreign locum if it matters) after multiple visits to others. He was the only one not dismissive of my pain and managed to find a way around to get me an MRI. It’s a good job he did as the spinal stenosis has now progressed to cauda equina and they sent me straight to A and E. The A and E back specialist said “You’ve likely been living with this for years (the spinal stenosis)”. Yeah, you don’t say? 🙄

Two years of struggling to parent my toddler due to the pain (I’m a SMBC) and now I likely face future back operations to avoid paralysis 😢I was planning on having more IVF for a second child and that’s possibly out the window now too. I’m furious.

Thanks if you’ve read all that. AIBU to think the NHS is dismissive of pain? An MRI back then when I needed one would likely have saved NHS costs now as well as my pain - it’s so short sighted!

I am a medical professional and have worked in the NHS for 45 years. I can tell you the care is diabolical and I have to research all of my medical problems .myself and practically present them with a thesis before they will even think about taking me seriously.

Sorry meant to quote ^^ About a patient advocate.

I completely agree with you.
Sorry it has taken so long for you to get a diagnosis.
A/E Department refused to x ray my back last year. I was in terrible pain. Told me to go home & take Paracetamol.
Eventually paid for an MRI. Revealed arthritis, bulging disc & fracture at L3.
I know longer felt a fraud for complaining.
Something really needs to be done!

It has occurred to me several times before that I would have been put down by now if I was a dog.

I'm not suggesting I should be euthanised on the NHS, but telling me to go away and try pretending I'm not in pain is quite shocking when you consider that an animal in the same amount of pain as me would be put down.

Our hospital board has hydrotherapy pools in three hospitals. They're all empty and drained. Even privately I can't find one.

My dogs on the other hand have three to choose from.

I had a spinal block with DD's C-section. When the spinal block wore off the midwives tried to fob me off with just paracetamol. Yes, really. The pain was horrific.

When I had my tummy tuck at a private hospital I was very nervous about pain after the surgery. I never felt a single twinge or soreness because my pain relief was expertly managed with powerful painkillers.

I've just had results back from my MRI, which I got after years of horrendous back pain, losing feelings in my left leg, reduced-nil genital sensation etc etc... basically got told that yes there is degeneration, but that's old age (I'm 37), and there is some bugling with discs that could be why I have nerve pain/issues, but I'm not that bad to warrant any intervention. They will if I become paralysed, but as it's fleeting due to nerve pinches, it's not and emergency. Besides pain is subjective, so take paracetamol if I need to! Great, thanks for that. I give up.

Nope, my OH spent a couple of years trying to get a succession of GPs to take him seriously, it's definitely not just women. GPs fob everyone off.

This! It's an absolute lottery whether they'll agree to refer you for an x-ray, MRI scan or CT scan.

I have had two hip replacements privately in the last year ( thankfully DH had some insurance through his work). I saw an NHS consultant first, who even though on my X-ray he could see bone on bone arthritis in both hips, caused by dysplasia, said I was too young for a hip replacement ( I am 52) ,and questioned whether I was in enough pain to merit being put on the list. He also said I had ‘excellent mobility’ even though I was really struggling to walk. So no- you are not being unreasonable in my opinion.

Depends how long he had the cough. A persistent cough is a symptom of lung cancer.
Lump in throat and a sore throat is common and not something that would flag throat cancer. By the way dentists are best at recognising the early signs of throat cancer which is why check ups are important. Early signs are usually visible on the skin inside your mouth.

Yes animals are put down when we would not put a human down. Is that a good thing or not?

Medics do get it wrong at times like any profession. But some complaints are also because patients do not understand medicine.

So 95% of people over 50 have degeneration in their back, usually in their discs. I have it, nearly everyone at my age has. The NHS has a criteria for an MRI in your back. The idea is that you get an MRI if it looks like surgery may be needed. Because otherwise an MRI is not useful, but costs money.

I have had a back x ray to check for a fracture, so I know I have degeneration in my discs. But knowing that does not change my treatment i.e. painkillers and physio. If we are going to pay for nearly everyone over 50 to have an MRI, we need to increase taxes to pay for the extra MRIs and staff.

I think that women tolerate pain better than men. I also think we are conditioned to just carry on with extreme pain. So we keep going with normal life despite being in agony.
So if you tell the doctor you are in pain but they see you walking in a fairly normal manner and hear you are still at work/ looking after the children/ walking the dog, then they think it can't be that bad. What they don't seem to understand is that you will keep going until you drop because you literally have no other choice.
They have to use their experience to try and judge what may be going on as sadly they can't get everyone scanned or referred to specialist services. So if they are used to seeing patients who look like they are in the same level of pain you are presenting with and there is normally nothing that warrants further investigation in those cases then that is what they will expect to find. And that is how they will then treat you. GP's know a little about a lot of things but they are not experts in any one condition.
Unfortunately, as most of us don't go to the Dr much and when we do we rarely see the same doctor twice they don't realise that what you are saying is extremely unusual for you.
I have a pretty high pain threshold and have suffered with that attitude a lot. When having my first child they told me there was no way I was in labour because I wasn't in enough pain. They only agreed to examine me because they had a new batch of students in. Turns out I was 8cm dilated. The same thing happened with my gallbladder and my arthritis.
I don't know what the answer is but like many others it infuriates me when my DH goes to the Dr with a minor irritation and, because he fits some demographic, he gets all sorts of tests and referrals. I can go with the exact same issue and get told to come back in a month if things don't improve.

@Roseshavethorns I have back pain. You can see from how people move if their pain is really bad. And people with really bad pain can not take a dog for a walk. They can not walk that far.
Drs see people in really severe pain. When patients may have zero understanding of how bad pain can get.

It's everyone these days. My coworker's husband has a kidney stone stuck in his ureter plus a few others and they kept sending him home before it got really bad and they finally opted to blast it which is what they should have done weeks ago.

Yeah I could walk by dragging one leg behind me, the relief when I lost feeling was insane
I told them to cut my leg off and was going through the best part of a bottle of morphine a day
The consultant said I was grey with pain

@tiger2691

I'm sorry to hear you have cauda equina. I was diagnosed with that but thankfully treated quickly. Hope you're ok x

@LilyJosephine

Not to scare you but you know that Cauda Equina can cause paralysis and you can lose the use of your bowel and bladder if not treated within a certain time period?

It's not terminal no, but life changing!

Right, so a ‘broken’ thing that can’t be fixed in your case. But visible and diagnosable, and recognised by medics. I know it’s disabling, I’m sorry.

My point wasn’t that men never have problems. It was that a lot of women suffer a lot of symptoms that aren’t visible or fixable. But still real and needing care-

But dismissed.
No one told me what fibroids do. They just mentioned in passing that I had a big one, after a scan about a coil if I remember correctly.
If I’d known the implications things would have been easier to manage.

Oh no that's awful. Such a callous thing to say to people. Shockingly unprofessional.

Thanks for the info - I googled the same and am really scared. I can only think that if the MRI report is correct, then I must I have partial/gradual caudal equina (if there is such a thing); as while I do have some numbness underneath and in my upper legs, I also still have some sensation too - and can walk, albeit in a lot of pain. They have basically told me while I am “urgent” , they that they have huge numbers of other urgent cases too… basically I’m to rush myself to a and e if the numbness gets significantly worse before they can see me.

I hope you were treated quickly and everything worked out for you - the idea of permanent loss of function is terrifying.

You can have partial I think, mine went from "almost" to "you're going to theatre" very quickly
I never lost bowel or bladder control and was still able to walk

Thanks very much. That’s really useful to know -as generally internet sites seem to make it sound like you must lose all bladder and bowel function and not be able to walk at all for it to be Cauda Equina , but the MRI report seemed quite definite 🤷‍♀️

Bed bound following my gp ignoring my consultant and cancelling my painkillers prior to that I was so active, hobbies , animals , swimming .
now my husband late 70’s with a heart problem is my carer.