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!

There's plenty of research worldwide that shows that medical personnel discount women's pain, particularly non-white women more frequently than they do men's. Womens longer life expectancy is due to genetics and hormones not NHS treatment.

Totally agree. If I’d known how important an MRI could be, I would have saved up to get a private one. But I stupidly trusted “the experts” who told me it wasn’t necessary and that it was only mechanical back pain or disc degeneration and made me feel like I was exaggerating my pain. If they’d been more honest that they weren’t referring me for an MRI because of costs, rather than clinical reasons I don’t think I’d feel as angry.

I totally agree with you. I think the NHS is dismissive of women's pain, whatever their age. It has actually been proven that medical professionals take womens' pain less seriously than mens'. I have a couple of examples of this. My DD and her DH have both had episodes of kidney stones. When my DD went to A and E,she was (reluctantly) given paracetamol which did absolutely nothing for the pain. When her DH went to A and E,he was offered a shot of morphine (which he accepted). Without even having to ask! My second example was for myself when I had a (potentially fatal) strangulated umbilical hernia. I was in severe pain and was throwing up every 20 minutes. In A nd E I was told that I had constipation and offered no pain relief. The doctor didn't even really examine me properly initially. One of my male cousins had the same thing a couple of years later. He was immediately given strong painkillers and a thorough examination.
Makes me so mad that women have to contend with these attitudes.

Similar story. Youngish mum and dismissed as pregnancy related. Gave up and asked for a pain clinic referral. Consultant gave a simple test and ordered an MRI. Huge herniated disc, thankfully not cauda equina but nerve damage has left me with residual chronic pain over a decade since surgery. Female doctors were devastatingly dismissive, as was one male who laughed at me, and physios missed the clear sign as it was ‘obviously pregnancy’ and couldn’t possibly be anything else after two years of severe pain.

I’m still angry and grieving but the pain course post surgery did a lot to help and I have a reasonable life and am mostly ok with it. Not being able to have a second child must be a blow. I had my second lucky but knew I’d risk a worse injury if I had a third.

I don't think individual Drs are thinking about cost, it doesn't come out their budget. It's more like what do they think the cause of the symptoms is, what special tests if any are needed to prove it or exclude other differentials/how could the mri influence the treatment plan, does the request meet the set criteria. But as I said re the MRI this isn't something the GP can typically order anyway. Although from what the op describes sounds like should have been referred to specialist much earlier, but then we don't know how they examined back then i.e. could have been classic CES red flags that were ignored not considered, or it could have presented as typically low grade msk back pain...

If you refer for a special test but the patient didn't meet the criteria it would normally be rejected. Its no where near the same standard but I can request x-rays in my role - if see a patient who wants their ankle x-rayed due to pain thinking it's broken, but then in the XR request note not justify clinically why it's required (bony tender, non weight bearing, Ottawa positive) then the radiologist will rightly reject the request and won't perform the x-ray.

I have horrific periods. Unbearable pain that I go to A&E and need morphine.

I told my gynae consultant that the coil isn’t working for me and my periods and pain are still horrific.

Do you want to know why my female consultant said to me?

”Do you think you ought to see a psychiatrist?”

I get the feeling sometimes that if a bloke comes in with a paper cut (probably via ambulance), he will have every kind of test and pain relief offered to him. Women are made to feel like they are drug-shopping or wasting time and resources for simply existing. Meanwhile, it’s well-documented that a woman is much more likely to have lived with significant pain before seeking a diagnosis or treatment than men, who are more likely to head straight in at the first twinge.

My experience of pain management on the NHS has been appalling.

I must have had to ask more than 20 times with various GPs before anyone agreed to give me strong enough painkillers for me to have any quality of life. I have an extremely painful health condition. I had got to the point of researching clinics in Switzerland before I finally spoke to a female GP who agreed to try some strong painkillers.

There was one particular phone call I had with a male GP who told me I shouldn't even be taking paracetamol for the pain I was in, which genuinely made me consider taking my own life there and then.

I'm so sick of the sexism against men on here, we ALL need better care and help for pain why does it always have to be made into men vs women? I thought it was actually well documented that men are LESS likely to go to the doctors than women. Has that changed or was it just a myth?

I have quite a high pain threshold and often find it hard to describe pain. A few years back I had bad abdominal pain that felt unusual - saw a young locum GP who insisted it was either gastroenteritis or IBS (although I’d never had previous symptoms and had no diarrhoea!) even gave me tablets for IBS without any tests!
Three days later I was doubled over in pain and after calling 111 saw an OOH GP, I was blue-lighted to A&E with sepsis caused by severe gallstones and inflammation of the liver - I spent over 2 weeks in hospital.
Too weak and grateful to have survived after fantastic treatment at the hospital to complain at the time, but I still feel angry about the dismissive ‘diagnosis’ of a ‘middle-aged women’s’ condition by that young GP. Newly occurring abdominal pain without other symptoms should always be investigated.

Oh please.

Have you any experience at all with maternity or gynae care within the NHS?

WOMEN ARE BEING FAILED IN HEALTHCARE.

It isn’t sexism. It’s fact.

I think theres truth to both, I've often heard men less likely to present with their symptoms but when they do get more investigations/treatment. But none of this is about men Vs women - its about the treatment of by clinicians. I think the medical field is a reasonably mixed affair in terms of sex, it's interesting that its not really a case of male Drs not listening/believing female patients, but male and female Drs not treating equally.

Another stupid bias is that when you discover a person takes drugs you're more likely to think they're making it up/not really sick - despite the fact that their drug use makes them far more likely to have a serious illness. So to counteract it some won't let a drug user be discharged without further tests because their aware their bias will push them to think that it's an exaggeration/not genuine/drug seeking and make them be keener to discharge them when maybe they wouldn't have done if they weren't a user.

No I haven't had any issues with the NHS as a woman, even being diagnosed and treated promptly for an autoimmune disorder. But if you and other posters feel big by shitting on men or making out they have it so easy go for it. My dad never went to A&E with stage 4 cancer pain so I guess he must've been a different sort of male that goes there for "a paper cut".

Yes. I totally agree with you. Men with chronic pain get help and women get ignored. I've had a bad back for over 10 years. I can't do the things I enjoy because of it and am on painkillers.

I've often been told that I need to go away and fix it myself(!)

It’s really shit op. I’m in bad pain with an ovarian cyst: Have had them before and they have always been misdiagnosed on ultrasound as smaller than they were and fluid cysts, when in fact they’re dermoid cysts. Only ever get diagnosed correctly via MRI.
Ive decided I’m going to try and save up for an MRI (they have them starting from £250 ) as I’m sick of the pain. Hopefully that will speed things up a bit.

I'm so sorry. That is disgusting. And yes, I can well believe it.

”feel big by shitting on men”

😂😂😂😂😂😂😂😂😂😂😂😂😂😂

Oooh, the poor men. Us nasty women on Mumsnet are so sexist aren’t we? 🙄

@CalleOcho you sound lovely. Is it beyond your comprehension that men will have the same failures in healthcare which are non-specific to gender? And that male only health issues will also have failures-as per a previous point I made about lack of willing in doctors to give men PSA tests. Some of us have lost male family members through atrocious (or non-existent) NHS "care" for christ's sake.

No. Men do not have the same failures in healthcare that women experience.

Failures in healthcare are very specific to gender. Please read the thread of women’s experiences on here, or at least do some credible research.

Whinging about the “poor men” and the “sexist women” makes you part of the problem.

This isn’t about the actions of male/female patients, it’s about how men and women are often treated differently, especially as regards pain. And how gynaecological problems are ignored/dismissed. It’s the actions of clinicians - male and female - that are at fault, not patients.
And it’s not just a few anecdotal observations, it’s actual, known, well documented facts.

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

Someone is being shat on, and it’s not the poor men.

My husband (well-spoken, articulate, white) once suggested that he go to the Drs and claim to have my pain in order to get some pain relief for me! He’d noticed he’s given whatever he asks for and sent for a barrage of tests as soon as he even sniffs in the GPs direction.

I'm so very sorry this has happened. It's an outrage. I wish more people could hear this story.

If the normal GP was genuinely unable to refer you, the question has to be asked why this was. Your MP might be able to help.

Has anyone looked into getting a healthcare advocate? I've been trying to get one for a few years now with no luck albeit my issues are everything except pain (so far any way). I was wondering if I could just ask a lawyer to come to my appointments (for their skills of arguing and persuading), even if they weren't a real healthcare advocate - it would be expensive but I can't see any alternative at this point and I have speech and language issues so can't advocate for myself (they're not eligible for advocacy - you seem to need a mental health condition, autism or dementia for that). So sorry for everyone living with chronic pain.

The link you provided seems willfully dishonest. It starts by saying that the gender gap differs between countries (in some men do better, in some women do better). It then focuses on the UK, and cites 3 studies to show that women do worse. Out of those 3 studies, two of them are actually about American healthcare (!) and the other one focuses on one specific illness (dementia) where women have worse outcomes. But its equally easy to cherrypick specific illnesses where men have worse outcomes.

If then mentions 3 enquiries -- the first focuses on an individual surgeon and has no real relevance. The second isnt about a gender gap. The third is about childbirth (which men dont go through, and hence has no relevance to a gender gap).

In what universe do you think that any of this is remotely strong supporting evidence?

I'm in England and have had his many times too! Husband also actually. I won't ever bother again. I see a sports physio now (I do run but haven't always) and she's amazing and has helped so much with some pains that I've had for 25 years.

I just don't bother going to the GP as think there's absolutely no point. For almost anything. I always come away feeling stupid and pathetic. It's a 'what's the point'

I suffer from some very very odd spasms in my body. Definitely not the usual cramps. Like I get them in my stomach and tongue and I regularly have parts of me that just lock up and won't move. Finally built up the courage to go and she seemed very confused and later when I looked at my notes it said I'd gone in for nighttime cramps. That is not what I said at all, in any way shape or form! So none the wiser and obviously still happening despite me trying so many things

Ironically sat typing this as am awake as in pain. Counting down to my private appointment with my physio instead

The symptoms of lumbar and cervical stenosis are what sent me to my GP complaining that the distance I could walk was getting less and less... something was wrong. I was told to lose weight, walk more.
I went again when my ability to walk without leaning forward on a shopping trolley practically vanished and I could barely get up my own stairs.

I was told to go for more walks, oh and take these sleeping tablets because the 'waking up gasping for breath' is simply panic attacks in the night. Yes thats normal even if you've never had one in the day...

My parter shook me awake, practically booting me out of the bed to wake me as I'd gone a funny shade of blue. They weren't panic attacks. I wasn't breathing.

I went back.. again and again. Eventually a Dr gave me diuretics, which helped. He sent me to an endocrinologist too... because I could not possibly have:

Stenosis
Hypothyroid
Heart failure
As a result of something else

Nor could I be hyper mobile.

But I was, did, do.. have all those things.

I have Ehlers Danlos (classic like) - however the stenosis was ignored much longer because I have heart failure and that was more important... until it wasn't because by that point I was too fat and too much of a risk in other ways to do heart surgery on (though tbh, having seen how badly my sisters went, I don't think I want it!)... so just manage the heart failure, go away.

I'd be able to walk if it were not for the significant nerve damage, that, on reviewing MRI's id had for other things and boney changes showing on xrays, is clear as a fucking bell. Stuff I'd asked to be reviewed in case other issues could be picked up, for YEARS.

I went to physios, they couldn't help, they weren't set up for the wheelchair user I by that point, was. Some were not even accessible venues.

I went back to GP's. No, can't be, you're just unfit... it's carpal tunnel, its sciatica...

So now they eventually agree it is... I was right, I'd been right for over a fucking decade. Only because I have demonstrated in person that I can cut off the feeling to my right hand by turning my head 'just so', and that I can't feel half my back ever, or tell whether I need a shit or not. Thats when they decided to review stuff they already had on file.

It is far too late to do anything and I'll stay in this wheelchair til I fucking die.

Hurrah the NHS, and their insistance that everything wrong with you is in your head, because you're fat, because you're female.