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!

It's not me who brought up men in the first place. And if me expressing offence because I've lost much loved male family members who weren't taken seriously either makes me a "whinger" then so be it. I've seen excellent care towards my mother and non-existent care towards my dad and grandad (all cancer). One of them is still here and it ain't the males. Nice job proving you're not sexist btw, but you're obviously among good company 👏

Was it a female doctor in the pain clinic at St Thomas's? I had the exact same thing said to me.

Ah I totally agree although it’s all dependent on what doctor you see. I presented at an and e with an excruciating gallbladder attack and was treated as a drug seeker. It’s a shame because every other time I’ve had amazing care.
Pain is very subjective and nobody should be stopped from having the correct treatment

Mortality rates and life expectancy don’t show the full picture though. There are a great many conditions that are unlikely to kill you but have a significant impact on your quality of life through chronic pain, mobility impairment etc - and in my (and clearly a lot of other people’s!) experience, pain isn’t regarded by doctors as a ‘problem’, especially if you are female.

I think I have a slightly unusual perspective because I work in veterinary medicine. We prioritise welfare (and a huge part of that is being pain free) above everything else (even over longevity) so it’s especially jarring for me when doctors seem to dismiss pain as a symptom that the patient needs to shut up about. I’d like to be treated at least as well as a dog, please…

I think in this case, the stick is shitty at both ends. I think the NHS is at a point where it can barely cope with all the acute issues, and therefore doesn't (cannot?) properly support the chronic issues until they themselves become accute.

I think it's also true that women's pain is consistently downplayed compared to men.

So it gets you coming and going unfortunately!!

The NHS is dimissive of everything. It needs a massive overhaul. I’m sick of the cult status it receives. Totally underserved

It starts young with women and girls as well. My daughter broke her leg at the age of 2. We were told by the hospital that it probably wasn't broken as she wasn't crying and screaming. It was broken and she ended up in plaster for 8 weeks.

Female pain is ignored by the medical profession. We should just get on with it and cause no fuss so they can take their time looking after the men.

I had some sarcastic shit from my doctor yesterday. I have a destroyed hip. The pain is terrible, everyday at work is a nightmare. I'm on the list for orthopaedic surgery. He wanted to take me off my painkillers. I burnt his ears and put the phone down. My surgery considers me "difficult" for not putting up with this bullshit.
I send formal complaints in every single time and that gives them so much time wasting hassle that they eventually stop with the dismissive behaviour and give you what you want. I can tell they all hate me. I don't care.

Yanbu, my pain/illnesses tend to either be not that bad (I could barely function) or “anxiety” 🙄

I didn't realise how bad women's health was until I had a baby. Had a very distressing 6 week check up with a female GP who seemed annoyed I asked for my stitches checked. Diagnosed me with a prolapse pretty much said what do you expect you've had a baby

I ended up getting a private MRI because three separate GPs sent me away saying nothing was wrong. I read my medical notes and they also completely misinterpreted / dismissed what I said.

I DID have a tumour. Wasn’t cancer. Needed to be removed.

I actually ended up going privately because the NHS was taking too long and leaving it there was risking long term damage. (I couldn’t afford it easily, but it’s the body I have to live inside for the next - hopefully - 50/60 years so I didn’t want permanent damage!)

The NHS is an absolute shambles. They only take you seriously if it’s life-threatening.

I now have medical insurance.

Well that's great that you never had any issues; and sorry about your Dad.

However - the OP has a point - particularly if you're a young female with pain. It took over 8 years for me to be diagnosed with rheumatoid arthritis (I'm sero-negative - so doesn't show on a simple blood test)

The relief now I'm on methotrexate is phenomenal../ I feel like it's only because I was persistent stubborn that it ever got treated.

No it was a man and not in London. So there are 2 doctors going around saying that to patients.

I think a lot of GPs (though many are excellent and doing a great job) and others are focused on acute, horrible conditions that are going to kill you in the short term and not chronic, painful conditions that are hard to live with, might stop you working, and lead to poor health long term. This partly is their training and partly I think it's a consequence of 15 years of underfunding.

The current government are negotating new GP contracts. It would be a great time to contact your MP and get your voice heard. They might even be able to achieve meaningful change. Also good luck, OP, and I'm glad they have finally diagnosed you.

I think men’s bodies are less complex. It’s a bit more ‘what you see, you get’. Their bodies work until they are broken, so then they get fixed.

Ours fluctuate. We are injury prone at specific times of the month, have cramps as a design feature not a failure, and so on. Our hormonal cycle can get out of whack and then winds down in midlife with various associated unpleasant experiences.

And pregnancy and birth is not ideal for bodies. Pelvic floor dysfunction, softening joints, and birth injuries.

Plus after a lifetime of this shit, we are prone to chronic pain in reaction to it, I reckon. Body is so used to feeling below par it becomes the new normal.

One of the most annoying moments for me, with hindsight, was being told I wasn’t perimenopausal because I wasn’t having hot flushes. Ten years later we seem to know better.

@Halloumiheaven where your first post falls down, for me, is that middle aged women’s chronic pain issues aren’t treated with painkillers as they aren’t responsive to pain killers. It tends to be nerve pain treatments, which are low dose antidepressants I think.

I don't think men's bodies are less complex. It's just for years (and clearly this still persists) men were the default and women were considered a smaller, defective man, and women's bodies were not studied or discussed in any great separate detail. Across the board, not just in medicine.

I agree. I have been in chronic pain for years. At the age of 19 I had a serious accident and smashed my body up- so it's reasonable to expect there will be ongoing problems. I kept going back to the GP to be told 'lose weight'. (Told this even though I had a BMI of 23. ) Finally with a sigh and a tut and eye roll the GP sent me to the muscular guy at the surgery and i was told to lose weight again and I was too young to have anything like arthritis. (I am 52). Finally DH got fed up and arranged for a private MRI- I have arthritis in both hips, bursitis and two bulging discs in my spine.

That is only one story I have. I also have a child who has a long list of health problems. We kept going back to the GP to just be dismissed. Turns out he DOES have asthma (took an asthma attack and admission to hospital before they took me seriously about his wheezing). He DOES have a rare allergy to the cold (told such a thing is very rare so he couldn't possibly have it- took an A&E trip with anaphylaxis after swimming in the sea - it's called cold urticaria and 'rare' does not mean 'impossible' and I have been told that I am a very 'protective' mother on forms which I interpret that they mean as a negative.

Then NHS is not a bloody sacred cow and their failures ought to be called to account. In my experience I feel that patients are treated as a nuisance. That said, I was in A&E myself at the weekend following an asthma attack and I was treated with courtesy and respect. Personally I find that locums and HCP from abroad are alot more attentive of issues than my regular now obviously jaded GP and Ds's various consultants.

I’m not sure I understand why an earlier diagnosis of spinal stenosis would have changed anything apart from you having the knowledge of the cause of pain. You would still have had all the symptoms you describe wouldn’t you?
What treatment are you having for the Cauda Equina?

Sorry but have to disagree about the men comment. Took 10 years for DH to be diagnosed with ankalosing spondylitis. He only got a diagnosis through private healthcare. He was in A&E for 12 hours and developed sepsis before being diagnosed with gallstones and 14 months to see a hepatologist as he had developed primary sclerosing cholangitis as a result. He probably wont work again.Tbh some problems cannot really be solved and surgery can be dangerous and not particularly effective. I think it is an age thing though
I seem to be sent for tests and referrals more readily now I'm 60. I suppose it's all about statistics and risk. There are limited resources as ever I suppose. It's causing unnecessary pain and disability though. I'd recommend going private if anyone can afford it. It cost DH £25k to have his gallbladder removed and to go through 4 ERCPs as he was so ill with a liver blocked with gallstone sludge. I work in z carehome and barely a day goes by without an ambulance being called and residents often get CTs, xrays and MRIs after falls. Most have dementia and are in their 90s.

I’m a woman. I’ve had lots of illnesses over the years - some sex specific. I’ve had 2 babies and fertility issues. The only time I felt that I was being treated badly as a woman by a medical person was when I had to have a medical for a CS job and the ‘doctor’ told me to strip off to my pants. I didn’t realise that wasn’t necessary!
Every other NHS worker (male and female) has treated me with courtesy, kindness and understanding. I have never felt dismissed or ignored.

Yup

I have anxiety and fibromyalgia.

Not a heart condition since birth, that's been ignored every time I mentioned symptoms until a junior doctor in A+E noticed it on an ECG.

Not lichen sclerosis, despite being biopsied and diagnosed as a young child, no treatment given, not told, biopsied again when older, finally given steroids, but significant changes and very frequent pain. And then found it my notes I'd been diagnosed 25 years before.

Not rheumatoid arthritis, another auto immune condition.

Not ovarian cysts

Nope, just anxiety, fibro and drug seeking behaviour.

I finally have a nicer GP who does listen on the rare occasions I go. But I'm so disillusioned that I rarely do.

Nail on the head. It's a national disgrace, not something to be proud of. And, no, it's not just recent. It's been crap for 20-30 years. It's only good if they know easily what's wrong with you and there's an easy treatment. Anything they can't readily diagnose and treat, they just fob you off as it's too hard for them, so they hope that another medic will work it out and send you on your way or leave you languishing in a hospital bed until a different doctor comes on shift.

Read the book "Whistle in the Wind" by consultant Peter Duffy - it highlights how NHS managers cover up laziness and incompetence.

The NHS killed my father in law back in the noughties. A very fit man, never been anything wrong with him. Literally week after week of languishing in a hospital bed, getting more and more ill, as successive doctors swanned in, glibly ordered another test (many already done previously) to make it look like they were doing something, then beggared off, leaving it to "someone else" to work out the problem another day. They finally twigged he had a bowel blockage (all the symptoms were pointing to it when you google it), but by the time they realised, it was too late and he was too weak.

Just had it again with MIL. Clearly had a severe chest infection. GPs wouldn't do a damn thing despite 3 appointments during December. Wouldn't issue antibiotics, wouldn't refer for a chest x-ray. She was just getting worse and worse and all the 3 different GPs would say was to buy her some cough medicine! We took her to A&E on New Years Eve and they immediately diagnosed severe pneumonia, both lungs, but she was languishing on a trolley for two whole days - 48 hours, before they found her a ward bed and started antibiotics. She died the day after.

Had it a decade ago with my OH. He'd literally never been to the GPs for decades, not at all since we'd been married 30 years. He started getting lots of different problems - lots of severe bruising for no reason, severe rib pains, fainting, severe headaches, severe bone/joint pains. He must have been going to the GPs every month or two to try to get them to take it seriously and diagnose what was wrong with him as it was really affecting his life. A succession of GPs just basically patted him on the head, told him it was all just what happens as you get older, and did the usual GP fobbing off. It was only when he had really bad rib pain for no reason and his chest was literally black with bruising that a GP took him seriously and ordered an x-ray. Turned out he had just broken 3 of his ribs - for no reason, he'd not fallen or had any kind of accident. The GP finally ordered some blood tests, but they came back normal. So, of course, usual "fob off" by telling him just to take it easy and they'd heal themselves and that "he must have fallen or knocked them and forgotten!". They obviously healed after a couple of months, but then it happened again on different ribs. This time, it was a locum GP who actually listened to him and spent a bit of time looking back on the notes and ordered a different blood test, but she wouldn't say what she was looking for. A couple of days after the blood test, she phoned him and told him he had an appointment with oncology a couple of days later. It was bone marrow cancer! Again, when you google the symptoms, it was a classic case, yet a succession of GPs over 2-3 years had completely missed the bloody obvious.

So, no, I won't be banging pans or lauding the NHS. It's a national disgrace.

I have had back pain since I fell off a horse when I was 13, in 2001. I have a family history of serious back problems - an uncle with ankylosing spondylitis, an aunt who has had multiple surgeries for spinal issues, a mother who has serious spinal arthritis and has had surgery for a disc issue and a father with scoliosis.

I was diagnosed with a slipped disc in my mid 20s and psoriatic arthritis in my early 30s, which is known to affect the spine. I have spent decades seeing doctors about my back pain and am now nearly 37. I have not once been offered an xray or scan of my back, despite the family history and my symptoms. Apparently I have too much movement in my spine. Well, yes, I also have EDS - I have too much movement in my finger joints too but they scanned those and found they were affected by PsA.

My husband has also had back pain for a few years now, starting in his late 20s/early 30s. He too has a PsA diagnosis and in his case, no family history of spinal issues. He's had all manner of scans of his spine!

I would have lied and said pain is worse since I fell off a stepladder whilst decorating.
maybe because I worked in the nhs and they are ordinary people and can make mistakes.

NHS GPs were crap 25 years ago! It's nothing recent. Blair lauded his "New" GP contract over 20 years ago to "cure" the GP problem. So there was clearly a problem back then. Trouble is that paying them more to do less didn;t "cure" the problem - it made the problem worse as they all just reduced their working hours! I'd love to believe Streeting's new contract will be a change for the better, but I'm not holding my breath.