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!

So what's happening with cauda equine have you had emergency surgery. No real treatment for stenosis anyways injections aren't in nice guidelines and they may operate but it only helps leg pain not back pain .

Cauda equine is an emergency and requires surgery to prevent paralysis.

The cauda equina patients I have encountered have been sent to the nearest specialist hospital immediately - via ambulance for emergency surgery. I haven’t heard of partial and wonder if the specialists who reviewed ops images interpreted them differently.
Back pain is such a difficult one. As previously posted, the vast majority of those over the age of 50 have degenerative issues and often, an MRI won’t change management, even for those under 50.

Rather than anecdotal cases and emotional guilt tripping, consider facts

Statistically, women undergoing the same surgery as men by male surgeons have worse outcomes and are more likely to die than the male patients.

Referred for what was thought to be a gynae problem and the doctor was very dismissive of the pain (I was crying) and said there was nothing he could do. It turned out to be a urology problem and suddenly there was plenty of pain relief. You only need to look at the respective waiting rooms to find out why.

Source?

And still no posters have addressed the inability for men to get PSA tests when they ask for it (for a disease that kills in huge numbers) despite claiming men get all their health needs served to them on a silver platter. Whilst women get invited to smear and mammogram tests. The bloody patriarchy eh!

https://www.theguardian.com/society/2022/jan/04/women-more-likely-die-operation-male-surgeon-study

I think it is ridiculous to take this as an attack on men - this is comparing outcomes- if there is a space in medicine where men are being failed then I expect no woman would have a problem with them advocating for this. However, the fact that women are failed by the medical industry due to years of sexism is not an attack on men, it is just the truth and there are.known historical causes- eg all practise and study was based on male anatomy. A current example is that the known symptoms of a heart attack are those for men -.women's symptoms are different and largely unknown and they have.worse outcomes here. And women should be able to advocate for this without men taking offence.

My anecdotal note is u am.looking for a diagnosis to a health issue that is.very.under researched - it only impacts women- but 10% of women - the gps have not heard of it, the only treatment is not available in the UK on the nhs, there are no specialists in the UK, getting a diagnosis is v difficult) 5 years trying so far.

https://lordslibrary.parliament.uk/womens-health-outcomes-is-there-a-gender-gap/

https://www.bma.org.uk/news-and-opinion/closing-the-gender-health-gap-the-importance-of-a-women-s-health-strategy

https://www.gov.scot/publications/womens-experiences-discrimination-impact-health/pages/4/

*link removed by MNHQ for privacy concerns.

Yanbu but it's not only young women, it's women in general (see also menopause).

When dsis was 21, she had excruciating pain in the pelvic area. Her (male) GP sent her away telling her it was period pain 🤔 Only when she was doubled over and my dad literally marched into his surgery demanding action did he take it seriously. Turns out she had pelvic inflammatory disease and ended up minus one ovary and with both fallopian tubes too damaged to conceive naturally.

When I was in labour with my first, I was told I wasn't in enough pain to warrant gas and air and was instead told to walk around the hospital until I was really 'ready' for it. After 10 mins of traipsing down stairs and corridors, again bent double, dh demanded that I was given pain relief. When they examined me I was 6cm.

With my second labour, I was told to wait my turn to be 'triaged'. Dh told them after 10 minutes that if I wasn't seen immediately I'd be giving birth in the corridor. 15 mins later, without gas and air, dd was born (indeed I was briefly considered for an emergency c section because she was in distress, wanting to come out!)

And now, at 46, I'm fighting to have my progressive joint stiffness and pain investigated. I've been sent to physio and told it's probably perimenopause and that the physio will 'hopefully' help.

It gives me the rage, more and more. There are countless similar stories.

Blimey, even when we’re discussing women’s health we still have to consider those poor men!

Anyway a comparison from me. My dad went to the GP with slight hand tremors and was immediately referred for further tests. Fortunately it wasn’t Parkinson’s as suspected, just a side effect of one of his COPD medications.

My mum also went to the same GP with hand tremors and shuffling when she was walking. No referral for her, she was definitely suffering with stress. This went on for several years. Her symptoms got much worse but despite repeated visits to the GP she was still refused any further tests. Then she had a bad fall on holiday and had to go to the local A&E for stitches. They were sufficiently concerned to write to her GP. Fortunately on her last visit she saw a locum who was horrified at the state of her and finally made the referral.

Mum does have Parkinson’s and is in a pretty bad way. Had she been offered the same tests as my dad then medication could have been started much sooner and we would have had much more quality time with her.

Even outside of ‘women’s problems’ there is still a huge discrepancy in how men and women are viewed and treated by the NHS.

I've had invisalign braces.

The dentist asked about pain on my first follow up visit. So I told them yes they hurt but its fine.

He and the dental nurse immediately started laughing. She was new and he had told her that every single man that has braces complains bitterly about the pain and every single woman minimises it and i had performed as expected.

Women have for generations had their pain ignored and are expected to cope.

I'm sure there are a million stories of women being told there is nothing wrong with them when in fact they are suffering.

It's the patriarchy at work.

I can only urge those who have been ignored to complain. Even if time has passed since being dismissed.

Im so sorry you’ve been through this, it is absolutely appalling and they do it’s expect people to live in pain unless they can afford private, especially women it seems.

I tripped and fell recently resulting in a broken wrist and broken nose, I rang my Gp for some decent pain relief and was refused, told to buy over the counter meds, I just wanted to cry 😪 it's just shocking now

Oh gosh, OP, how unbelievably frustrating thet just be.

Yanbu. I'm not sure it's just the nhs, I think it's healthcare full stop.

Essentially we have a "diagnosis and treatment" service, not a "health" service. I feel that the medical model of healthcare, whilst it has delivered many improvements in clinical outcomes ans life expectancy, has left us with major gaps in compassion and "care".

Doctors are rushed, inundated with guidance, and expected to be everything to everyone. It's just not working for people who have needs other than a straightforward diagnosis and treatment conveyor belt.

I'm not sure whether it's just underresourcing, or attitude, but it's very unfortunate for the poor sod in agony for no obvious reason. I faced two years of aggressive "So what do you want from me?" GPs, when my pain had no easy explanation. I never got any results that explained it, but on my own meticulous research I finally stopped taking statins which helped reduce it to manageable levels.

I'm so sorry that yours turned out to be something like this. And I wish you all the best for the future. 🙏

You do know that the PSA test is not very accurate ?

Might be why it’s not often offered.

I think there's a percentage of health workers who temper down the things you say pain wise....eg I'm not a screamer or go all OTT so it can't be that bad type of thing. There's also a pushed campaign with posters saying that there's no such thing as painkillers.....well when I'm in pain Dr Bloggs then take these pills if I take enough the pain stops...so what are the pills that kill the pain.....
Analgesics....Smart Arc.
Sorry long winded way to agreeing but as with this post don't give up you know your body keep getting another opinion if you feel strongly. Glad you got there OP

Maybe they could come up with something more accurate if they spent as much money on prostate cancer research as they do breast cancer?

@anon666

I'm not sure whether it's just underresourcing, or attitude,

I think it's mostly attitude unfortunately. The NHS staff seem to have fallen into a downward spiral of obsession about how busy they are, how awful the patients are, etc etc. Not helped by the false claim of it being a world leading health service, pan banging, etc.

My OH has cancer and his "treatment" at the hands of supposedly professional staff in the oncology department has been abysmal. They can't get anything right, not appointment, not the drugs packages, not the infusions, etc. He has learned to question absolutely everything they do as it's a complete shambles. Even picking up his monthly drugs is a mammoth task involving multiple phone calls as they get the drugs wrong, the pick up location wrong, the dates wrong. It's an absolute fiasco, and that's for something life threatening, i.e. cancer!

When he is in utter despair at it all and complains, he gets the tired old trope of "you're lucky it's free, you'd be bankrupt in America" as their answer to why they're incompetent. It's that kind of attitude within the NHS which means it will never improve. Too many staff think they're doing you a favour and that you should be eternally grateful to them.

I'm sorry to hear that this has progressed to cauda equina syndrome. I'm a catastrophic injury lawyer, I don't deal with clinical negligence claims but I frequently see law reports of clinical negligence cases involving missed symptoms leading to cauda equina.

You might not be ready to consider this yet but if/when you are, you should seriously consider getting advice on.pursuing a claim as the consequences of this missed opportunity to diagnose & treat you are likely to have significant consequences for you. I can recommend some excellent CN Solicitors if you would like them. Or if not, please do your own research to find a proper specialist with experience of high value CN claims. You don't want to go to just anyone with this.

@taxguru I am really sorry to hear that and I am surprised. Everyone I know who has caner or had cancer were really happy with their treatment

Just reading last week that Wes Streeting is further downgrading women’s services in the NHS.

Go and campaign on a men's health thread then

This is so scary - it seems to be a bit of a lottery - ie being ‘lucky’ enough to get a GP/Hospital diagnosis correct and subsequent treatment.
You must feel let down, very disappointed and very angry.

@taxguru @JoyousGreyOrca My cancer treatment was not good either. My post surgical pain was dismissed and ignored for months until I went private - unfortunately I’d already lost my job by then! The appointment booking was incompetent at best and a big percentage of staff lacked any compassion. I’m more terrified of having to deal with the NHS again than my cancer coming back.

I had similar a few years ago. In 2016 I fell and badly wedged my L1. I had already been diagnosed with osteoporosis. I insisted on a referral and was seen by an excellent rheumatologist and prescribed optimal treatment.

Five years later I had another bad fall. My wrist required surgery. I was in acute back pain and suspected another vertebrae had fractured. This was utterly dismissed. The pain continued.

I saw my GP who asked me to touch my toes. I could get as far as my mid shins and she told me no way was it other than muscular. I disagreed and fortunately was able to pay for a referral and MRI.

The T12 had wedged badly. The fact the NHS failed to listen caused a five month delay in optimal treatment. Optimal treatment not funded by the NHS because Inwas a couple of years younger than the NICE bar. Fortunately I had the £2400 to paynfor it.

NHS staff were both rude and dismissive, if not entirely incompetent.

I have been advised that if in future a Dr refuses a referral letter, to request that they record in my records " the patient requested a referral for further investigation because they suspect their symptoms may indicate a significant issue, but I disagree and have refused to refer".

The NHS needs to sort itself out. As per Taxguru, NHS staff certainly need to recognise that the NHS is only free at the pointnof delivery. It is not free - at all.

I have Trigeminal Neurologia and after finally seeing a specialist they said other then heavy zombifying pills there is nothing that's thry can do. So now Inhave to cough up to get cranial Osteopathic treatment and go down the alternative route which is very expensive.
My DM suffers with chronic pain and they threw everything at her all the drugs and injections and becuase it has not worked they say it is in her head...... Was she offered any MRI at any time. Nope.