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!

And funnily enough when there are actual illnesses that only impact women you can't get a diagnosis at all (not necessarily pain related)

I'm in Wales, was told a while ago that an MRI is a diagnosis. A diagnosis can put you on a waiting list. Which increases the number on waiting lists. So to shorten waiting lists they ration them.

Luckily I had private health care so went privately was diagnosed following the MRI. The treatment on the NHS re physio is dire . So I'm paying for physio.

I've no idea what happens in England etc. this is a Welsh sleight of hand.

I agree entirely.

My point was addressing why middle aged women (and that includes me) may end up unfairly getting stereotyped

@Halloumiheaven

I have a daughter with what you seem to class as a "non illness". Very judgmental of you me thinks. She is only 22, and did you know they said HIV was all in the head until they realised it wasn't. If doctors don't know what causes something many like to pretend it doesn't exist and us all in your head. Such arrogance 😡

My goodness me- what on earth caused you to think I thought HIV was a "non illness '" good grief it's a very serious lifelong immunological chronic disease ! 😲

Unfortunately it's not just the NHS - it's a worldwide medical establishment thing. Woman's pain is just dismissed generally.

I think sometimes it's the type of pain that isn't taken seriously (endo, back pain)

I had cauda equina and had surgery, remember telling them I wanted to cut my own leg off to ease the pain and I definitely took too many painkillers sometimes. Fortunately 5hr op went great and I had a good recovery

2 years later my younger male cousin had been in and out of a&e begging for help with back pain after an accident. He died from an accidental pain killer overdose trying to relieve the pain age just 32

I think that it comes down to the prejudice that men are more stoic and more busy and important and so will only take time out of their day to go to the doctors if there is something seriously wrong with them whereas women do nothing all day but sit around, drinking tea and discussing their ailments and therefore, if you, a woman, go to the doctor it is just because you are wanting to play oneupmanship or have something new to discuss rather than because you are in crippling pain.

@HateLongCovid I have reread your post. I think I understand what you were trying to say now. I thought you meant your daughter had HIV

I'm sorry you find my opinions arrogant.

There's basis for my opinion rooted in research and fact.

I won't be changing my opinion based on your offense of it. Have a nice evening.

I said that some doctors are arrogant. I believe you are just ignorant and ill informed.

Havent RTFT but OMG YES! Especially with back pain!
I went to GP age 36, and was told “we don’t do backs” DH kept ordering me to go back, but each time they shrugged and showed me the door.

10 agonising years later, I got orthotic insoles for over pronation and ankle problems. Back pain went! Why didn’t they tell me the link between my feet/gait and back pain? Would have saved years of discomfort.

Back pain has returned, despite years of relief from the insoles, so I’m going private. Can’t face being dismissed again.

Oh, and my anxiety is only allowed to be a menopause symptom, and only treatable by changing my HRT. Again. And again. And again.
Its still there 😔

@justasking111 In England you can see a physio at your GP surgery. Mine has a waiting time of about a week for an appointment. There is criteria to be referred for more intensive physio - with back pain up to 8 sessions. And with certain more serious illnesses you can get ongoing NHS physio. My partner has had NHS physio for about 5 years.
But the NHS, in fact no national health system can fund everything. So if you want or need more, you do have to pay for it.

It's not just the NHS, dismissal of pain especially chronic pain is a wide spread issue. From various groups I'm in for chronic pain I know it happens widely in english speaking nations like America, Canada, New Zealand and Australia as well as the UK. I wouldn't be surprised if it's an issue in non English speaking countries too, I just have no experience there. There is a general bias against effective treatment of chronic pain but men and especially white men still get stronger doses and more medication prescribed at a population level then women or people from ethnic minorities. I don't know how the data compares between say caucasian women and men from ethnic minorities or if women from ethnic minorities are even worse off, but there is a lot of research showing systemic bias against women and against ethnic minorities.

I would love to explain my role in research to you and assure you I'm very much not ill Informed. But I think I may waste your time and mine.

I am allowed my opinions (some of which you have incorrectly assumed)

You are very much entitled to yours.

Thank goodness we live in a democracy (for now anyway )

That's very good. We get a hospital appointment, look at the notes print out a page of exercises and are sent away.

@Halloumiheaven

Go on then I'm interested. Which conditions does your research apparently prove isn't real?

@justasking111 When i saw the physio at my GP practice they assessed me, and then recommended exercises to do. What more do you want? If you do not have the willpower to do them and need a regular session with a physio, then yes you have to pay for it. But I did my exercises.

You can get physio (relatively) easily in Wales too - where I am, you can self -refer and usually reach the top of the waiting list in a few months. The problem might be whether that physio could actually make the problem worse without a correct diagnosis of what’s actually causing the back pain in the first place. Physio actually made my pain worse as mechanical back pain (the most common back pain and the one often treated by general physio) is really not the same as Cauda Equina or even Spinal Stenosis.

What we really need to invest in is more MRI and CT scanners. I didn’t realise, but apparently the UK has the lowest number of scanners per million population when compared to similar “developed” countries. We seem to be just throwing a sticking plaster at things, treating the symptoms of illnesses without knowing the cause.

@LilyJosephine The physio I saw asked questions and assessed to exclude spinal stenosis.
We do need more scanners, but then we need to pay more for our healthcare. We pay far less than comparable countries.
Without that expenditure, scans have to be used for those who are assessed to need it most.

My physio just said “go back to your GP”, which I did (again and again). Cauda Equina has a strong risk of paralysis -you can’t think it’s okay that my 3 year old could have his only parent in a wheelchair because I wasn’t “assessed to need an MRI most” by all the medical professionals I saw? (until I finally got one who took me seriously and wasn’t “gatekeeping” due to lack of funding).

YANBU and I'm sorry this has happened to you. My experiences with MSK have been dreadful. I was first told I had a rotator cuff injury and sent away with a leaflet. The exercises were agonising and made it worse. After much back and forth I was sent for physio which didn't help. More back and forth and was eventually sent for an ultrasound several years later. Very bad bursitis, fine, offered a steroid injection. Injection didn't help, more back and forth with the doctor and another couple of years go by. I developed a large lump on my shoulder and was finally sent for an MRI. It turned out that the 'rotator cuff injury' was actually a shoulder fracture which has led to the bursitis, cysts and muscle wastage. I thought, oh, finally, maybe someone will take me seriously now, but I never heard from them again. I went back to my GP surgery and finally got a GP who cared. So now, ten years on from the fracture and after ten years of pain and constant difficulty moving my dominant arm, I'm finally on the waiting list to see an orthopaedic consultant to discuss surgery.

I had a female consultant tell me I didn't have a problem with my back, to stop taking steroids (got hypoadrenalism so that would be difficult) loose weight and take up pilates. Very helpful (not). Turns out I had a bulging disk at l4/l5.

I ended up being referred to Salford Royal at the same time that dodgy consultant was working there. I actually saw him in clinic but thankfully I was assigned to one of the other consultants who was fab. Took 2 years to get my back sorted after 3 years of sciatica and being told it was in my head. My consultant told me they had to be careful because of my 'other' back problem.

Didn't have a clue what he was talking about until I saw a Rheumatologist who said oh dear you've got hypermobility. Sounds about right born with but not dx until 46 despite many years under a different Rheumatologist.

It's disgusting

Its truly amazing that women have 4 years higher life expectancy than men and better mortality rates for almost all diseases, given that the sexist NHS apparently refuses to treat women's illnesses

That sounds rough.
It's a frustrating situation, but it's the part of the GP job to safeguard referrals and special tests, that's the system we have in the UK, if they didn't it's likely waiting lists would be many times what they are already.

From what you've explained id agree it sounds like you had a significant delay in your diagnosis which shouldn't happen but it's recognised that unfortunately it's a risk in triage. Doesn't help when you're on the wrong end of it.

Triage is by no means a simple one, it's hard to see pain for what it is in a short appointment - to sift the genuine from the not so - everyone going to their Dr will have pain or another symptom of some kind. The huge majority of which will just get better in time, or its not a medical fix but a lifestyle change that's required - the volume of people coming in with back/knee problems and you take a history they've a BM of 35, never exercised, not engaged with physio, not tried using paracetamol and you just think we'll of course things are going to ache...

In terms of the MRI though to my knowledge GPs aren't allowed to refer for them. You'd refer the patient to the specialist team i.e. make/orthopedics as either routine or urgent, it would be that team that would arrange the MRI.

If you attended the clinic with symptoms of Claudia equina (typically any of the following -pain/altered sensation in both legs, altered sensation about the genitals -can present as difficulty to orgasm/maintain erection, altered bowel/bladder function) - then you normally be sent to A&E/orthopedics same day for review ?MRI. They don't scan everyone though, lots of people lie and exaggerate symptoms to try and get special tests but screening beforehand normally picks them out. As you're probably aware if CES isn't treated in 48hours from onset then there's much less that can be done. Often people come in with symptoms over X weeks and whilst I still refer on straight away can see they were dropped down to routine essentially becoming MRI for diagnosis only not for surgery/maybe steroids.

Why? Why can't doctors order an MRI for everyone who has a longstanding back issue? Because I could book myself one tomorrow if I wanted. It's not even that expensive. But I presume other options are cheaper.
If it's funding then patients should be told that. Told that an MRI would be gold standard treatment but they are not going to get it because the NHS can't afford it. Then at least we could all make our own arrangements.