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!

A few years ago my health board in special measures for 8 years only lifting during COVID if they mess up surgeries send you off to the Spire to put it right to avoid compensation.

My late BIL had been off for a while, bad chest and back pains, headache and disorientated. DS went with him to GP with a list of about 5 symptoms as he was somewhat confused (1 symptom) GP would only discuss one symptom per appointment (WETF).
GP only wanted to talk about his existing BP problems. They persisted for weeks but every symptom was brought back to BP.He collapsed a couple of weeks later and was blue lighted to hospital. He had lung and brain tumours.
Poor man lived 4 months 😢.

Agree completely, and have back problems and have been fobbed off for years. Ended up in a&e recently after losing the ability to walk. Finally got a MRI (only because they were worried about cauda equina) a prolapsed disc, a torn disc and arthritis in lumbar joints. Not life threatening but very painful. I've been dismissed many times by nhs staff and there's all the waiting to be seen for appointments in total agony. Pain is not important at all

You are aware that women themselves were a huge driver of the campaign for breast cancer research and subsequent treatment from donations ?

Perhaps men could get together and do something similar or really push and campaign with existing charities ? Perhaps Prostate UK would appreciate you getting in touch ?

It’s also worth noting that survival rates for breast cancer now are much better than 50 years ago - which was only about 40% chance of surviving 10 years in 1970. Because of said campaigning etc.

Whereas Prostate cancer is often already very treatable and the overall outcome in terms of survival rate is over 80% will survive more than 10 years (cancer UK).

So it’s fairly obviously already a better outcome than women with breast cancer were starting from back in the 1970s after which time the campaigns started and high profile women started to talk about it highlighting the need for research and new treatments.

Nevertheless still a worthy cause (indeed close to my heart as Ddad had prostate cancer and is in remission now ) so I’m sure you’ll be getting stuck in yourself.

OP I'm so sorry for your health issues, it must be hard. I too have been fobbed off by numerous doctors with lower right abdominal pain for the last 3 years. The last bout of agony resulted in an 18 hour wait in A&E to be told it was "probably a UTI". I've now managed to get my GP to refer me for an MRI but I can only do so privately as they don't see it as medically urgent, given my last hospital visit didn't show anything. They've removed both my gallbladder and appendix and the pain is still there. Now pretty sure it's endometriosis given my increasingly horrific periods.
My husband was with me on one particular visit and he was absolutely flabbergasted that I was being dismissed so easily and to just take some paracetamol and "keep an eye on it".
Hopefully having a diagnosis of sorts is giving you some comfort, but I can only imagine the hoops you had to jump through.
It's shite being a woman sometimes.

I’ve had back and neck pain for years. Referred for nhs physio and just get given sheets of paper with exercises on. They don’t tend to help. So I stop. Months later and I go back for physio - we can self refer. See a different person who gives totally different exercises on paper. So far no one has examined me. GP prescribes amitriptyline for the nerve pain but for the mechanical pain in my lower back says to just take paracetamol and ibuprofen and just heat and ice when needed.

Where I work we can be referred for physio due to the nature of the job. Usually just about 6 weeks and usually if job related. Whilst my job hasn’t caused my issues, it’s contributed to them. So I get the referral. Private physio is hands on. Says no point on pages of exercises. Asks why I haven’t had an mri. Does a really thorough examination and suggests further appointments for hands on manipulation. I do this for 6 weeks and it seems to be helping. But then I get discharged as work only fund 6 session.

Pain comes back. Go back to GP. He ups the amitriptyline and says to he will refer for MRI. Gets a letter a few weeks later to go for an appointment with physio. MRI refused. New physio is a level above previous ones and he does a physical examination. Confirms it’s likely trapped nerve in neck. Suggests manipulation and a refers to a physio he knows who will do hands on rather than pages of exercises. I see her. She does 5 minutes with her 2 thumbs on my neck and gives me some exercises. Not helpful. She discharges me.

A year later I ask for another referral from work for private. Again their 30 minute hands on manipulations offer relief. After my 6 sessions I continue to pay weekly, the fortnightly, then monthly. Physio suggests o try Pilates for my core strength and lower back. Which I did for quite a few months but find that the arm exercises trigger my neck so I’ve had to stop for a while.

Went to get a repeat of my prescription from GP who decided o should be seen again for another examination so I do. Amitriptyline upped again. She now tries to send off another physio. This time trying for injections and further investigations.

I should add that my neck pain cause burning down my left arm. Constantly. Some days worse than others. At that time I was also having heart palpitations so I tried one time to get an appointment with out of hours and was told to go to A&E as they said it was symptoms of a heart attack. I said not and I just needed to be seen by GP to get some anxiety meds and pain relief. I’d assumed palpitations were anxiety as I’ve been told this before on the past. This was before the amitriptyline was prescribed. Went to A&E whist they did alsorts of tests. Was in for ages. Then they said my heart seems fine and likely anxiety and that I needed to go back to my GP for pain relief and anxiety meds as they couldn’t prescribe!! Waste of time.

Went for BP. High. Went again. High. Given a BP monitor to wear for a day. Average normal but picked up possible atrial fibrillation - funnily enough at the same times I get the palpitation. Eventually got an appointment 3 weeks after the BP monitor with the GP who has now referred me to cardiology as well.

It’s not just pain that’s dismissed. Everything is put down to anxiety or age. It’s such a battle. I’m nearly 50. I’ve had tiredness issues all my life. Usually it’s lifestyle - you’re a student, you’re working full time, you’ve got young kids. Years ago I had stomach issues. Again - anxiety. Eventually given beta blockers. Eventually got a referral for investigations. Turns out to be a lactose intolerance. Came off the beta blockers when I gave up dairy. Until o got put back on them for the palpitations!!

I don't think this exclusively to do with how the NHS treats women - although its lack of knowledge on gynaecology clearly doesn't help.

My father suffered bad pain for years. His doctoe told him to take painkillers and exercise more. He was eventually diagnosed with metasticised lung cancer. Even then they didn't get his pain relief right, until a week before his death when he forked out for a private consultation.

I've just recalled that in the six months before diagnosis, my father was very tired, and was treated for three chest infections. I remember remarking that he had bruises on his hands and he said it was from carrying heavy bags and the GP had agreed. He saw his GP six times in those six months. On holiday he collapsed and was taken to A&E. He had acute myeloid leukaemia. He died one year later.

He was 71.

I am sorry you had grim times too.

I’m sorry again to hear such horror stories - ❤️ for you all.

Thanks for the offer about sending me the names of solicitors @BalalaikaBalaclavaBaklava but to be honest as angry as I am, I’m in too much pain to have the energy to fight something like that at the moment😢. And while I could have managed to save the fee for a private MRI if they’d been honest and told me I should ideally have one- I can’t afford private surgery and am reliant on the NHS eventually helping me now (so can’t afford that word could get around). I just have to wait and hope it doesn’t get worse.

People I’ve spoken to in RL agree how wrong/terrible it is (everyone seems to have their own stories of seeming negligence too ❤️) -but say it’s not even worth a letter of complaint because apparently things like this happen so often 🤷‍♀️(and obviously in my case the muscular skeletal specialist isn’t going to admit she said it can’t be Spinal Stenosis or anything serious because I was too young and I didn’t take anyone to the appointment who could back me up).

Problem is they (GP’s/Specialist) all seem to pass the buck - it’s basically “I’m not going to do anything (scans), but if the symptoms get worse then go to A and E”. It’s why in my area A and E has a standard wait time of about 9 hours - but saying that to every patient covers them for any negligence claims and means they don’t have to justify any scans themselves.

This isn’t about the NHS per se but about individual professionals. There are some excellent professionals in the NHS and some specialist pain clinics. But sadly there are not enough of these.

I’m hoping that as just over 50% of doctors in the UK are now women, there is about to be a huge, desperately needed change on how women are viewed health wise. I think we’re generally tougher and used to accepting pain eg bad periods, childbirth - we need to be listened to when we do say this is painful in comparison to what we put up with daily, which we know is part of being a woman

You have to persist and keep pushing, i had both hips replaced when in my late 50 s , i was lucky but my gp said to me when knowing this was to happen, dont you think pain killers and exercise would help. I said Im getting them done its all arranged, i was living with the unbearable pain. Dont give up, ask for second opinions, you can be a pest its your pain.

I know women campaigned and did a fantastic job and men probably need to do more but point is if it was so easy for them to get treatment (like some posters are insinuating) they wouldn't need to badger doctors for things like regular PSA tests. This is already something that happens in America from age 50 (might be even younger) and they have FAR better cure rates there. I do follow prostate cancer charities on twitter and give when I can. Am glad to know your Ddad is in remission and hope it stays that way.

YANBU: I got sent to the surgical admissions unit by the GP with suspected gallstones. I was in agony. My pain threshold is quite high due to a connective tissue disorder. Once he ruled out gall stones the Dr was SO dismissive. I could hear him in a discussion (behind a totally discreet curtain) with another doctor who was working with him. She kept suggesting giving me the option of an admission for a morphine drip he kept saying I was clearly anxious and overexaggerating because of it.

He even asked me if I could be perceiving my pain to be more severe than it is because I was anxious about not knowing what it was.

It was actually a medical student on her first placement who was my saviour. She was really uncomfortable with the fact the lead doctor kept trying to discharge me because I was visibly in pain and she'd noticed a few red flags in my records confirming high pain tolerance. E.g I tore a ligament in my ankle and didn't notice until my foot swelled because I'm so used to ankle pain. She went over his head to the registrar, and advocated amazingly got me. The registrar offered to admit me instantly for pain meds, and then referred me for multiple ultrasounds, x-rays an MRI and an endoscopy. I actually declined the admission because I just wanted out by that point.

Turns out my "anxiety" is actually a rare stomach deformity that can cause the exact symptoms I experienced 🫠.

I don't blame anyone for not figuring out the stomach deformity. It's rare enough that there's basically no information on how to manage symptoms other than cutting off the deformity in a gastric bypass.

However, I do think the lead doctor should have been less dismissive and should have listened to me, as well as his colleagues about not brushing off my pain as anxiety.

When I first went to my GP with my back pain I was given amitriptyline, gabapentin, pregabalin and Tramadol over the first 12 -14 months, none of them helped, plus the side effects were horrendous and many.

I went back to my GP and asked for a referral for an MRI, she replied that I had tried everything, over a correct period of time and that she would refer me. Within 6 weeks I'd had the MRI and the follow up appointment with the consultant to discuss my results and treatment options. That was in 2013, the NHS, at that time, was not in bits.

If the GP refuses the request ask for a second opinion but the Practice will probably close ranks. My Practice has some sort of weird cabinet arrangement, head honcho and everyone else around a table, discussing various individual cases.

My point is that your mother should go back to her GP and ask for an MRI, she's done the time span and tried all drugs, none helped, she's still in chronic pain, time for an MRI. Dread to think how long the waiting list, they are though, relatively cheap privately, if one has the money.

Thanks. After seeing the cock ups it’s no surprise our cancer outcomes are lagging behind other developed countries. And the waste - oh has a cupboard full of expensive drugs where he’s been issued too many due to them cocking up his regular monthly prescription - some costing £1k per tablet per the nhs website. Also hyper expensive bags of chemo infusions that they chuck in the bin because they’d been left out too long whilst waiting for a nurse to set up the cannula.

Who ever said HIV was " all in the head"?

The UK has fewer MRI scanners per head of population than most of the rest of the developed world. MRI scans are rationed in a way they really shouldn't be.IMO the answer is more scanners would save money in the future.

This explains it :
https://www.bma.org.uk/advice-and-support/nhs-delivery-and-workforce/pressures/nhs-diagnostics-data-analysis#:~:text=The%20UK%20has%20less%20diagnostic%20equipment%20than%20other%20countries&text=The%20UK%20has%20just%2010,while%20the%20UK%20has%208.6.

I have both those conditions and whilst what you say is true to an extent 95% of the people with natural west and tear don't have the nerve pain or limb weakness that people like me and the OP experience. In order to live full and productive lives people need accurate diagnosis and imaging to get proper help.

It's one of the reasons I joined Benenden, £15.99 a month & after 6 months you can have private treatment, scans, consultations, if the NHS will take longer than 3 weeks & a long list of common operations.

Back at Xmas 2022 my dad was in extreme pain in his back and hips, to the point he couldn’t move. He’d been to the doctor about back pain which they’d dismissed as he’d had a slipped disk in the past and assumed it was related. Just painkillers and exercise. When he told the ambulance pain was in his hips too a scan was arranged. They discovered lesions on his bones which were called by multiple myeloma. He started cancer treatment by Feb of 2022. If he’d not had the scan they’d never had found it.

He did well on treatment and is in remission but it never completely goes so it will be back some time 🙁

@joyousgreyorca backs are tricky things: a private MRI identified that I had one crushed vertebra and bulging disks at L4 L5. That was in 2016.

In 2024 I had a full body scan with a dye and by then the T1 had also been well wedged. Additionally it identified I have degeneration at the hips, knees, ankles and right shoulder and confirmed that I have Paget's Disease.

That all sounds horrific doesn't it. Sometimes my back is a bit stiff but I have No pain. People have far fewer problems and are in agony.

I'm 64 and still working full-time and need right now to get in the car and on my way.

There are few explanations about why some people suffer badly and others don't.

Another one who agrees OP. I had constant period pain needing strong painkillers and bleeding more weeks than not (usually 3 weeks a month) for a year. I spoke to multiple doctors, who did scans and said nothing was wrong. Each one asked questions about contraception, and I told them I had a copper coil.

Only when I spoke to a practice nurse, and mentioned I had a copper coil (which I’d been told had a lifespan of 10 years) did I learn that they often start to degenerate and cause problems from around 7 years, which was the number of years I’d had my coil. She said herself “it’s life affecting but not life limiting, so this issue often isn’t taken seriously”. Thank god I came across her.

I had it removed, and those symptoms immediately stopped.

Now my husband and I are trying for a child, without success. I am arranging a private referral to check whether that time with the coil has caused scarring. I hope not, but if it has, I’ll have the NHS’s inaction to thank for potential infertility.