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!

I’ve been disabled and in pain my entire life. As a child, they done everything to get me out of pain. I’d often be admitted just to get the pain under control. They seemed to care about doing everything in their power to ensure I wasn’t struggling.

now as an adult, I go to my appointments and they say ‘you’re on the right medication there’s not much else we can do’. I’m basically told to get on with it and I’m in tears getting out of bed, I’m in tears by the end of the day due to the pain. I only leave my home for medical appointments and to do the school run as I physically am incapable of doing anything else due to the pain. I have a 5 year old that I can do nothing with. I can’t concentrated, I can’t think straight. There’s definitely a correlation between constant pain and mental health issues as I’ve been depressed my entire life because of it.

I try to communicate to my doctors my life struggles and that I have never had a day in my entire life where I haven’t not felt pain and no one takes me seriously and expects me to just get on with it. It’s horrendous and debilitating- I’m only 28 and I cannot think what the rest of my life will be like.

OP I hope it gets better for you, I guess I’m rambling just to rant but also to say you’re not alone. I’m so sorry you have been treated the way you have and I hope you continue telling your story to raise awareness! stay strong, sending love to you x

The NHS sadly can’t be relied on now
People have to push hard for referrals scans etc and not be fobbed off
Failing which go private ( which I never thought I would say )

I was told by a Dr, after an X-ray on my hip, that I had mild to moderate arthritis. He made me feel like a nuisance, and tbh, I became quite depressed.

When the pain was so excruciating that I couldn’t walk, I was referred to the physio. He looked at the same X-ray and told me that I needed a hip replacement because my hip joint was bone on bone.

When my other hip started to go, I was much more assertive!

I had to fight as a teenager for them to take my pain seriously. My periods were hell, heavy bleeding and utter agony on the first day. Painkillers didn’t work as the pain made me throw up and brought up the painkillers. My exams were hell as I started on the day of one and fainted in the exam hall.

My mum took me to the doctor again and the prescribed Ponstan, which I threw up half dissolved. The GP then shrugged and said ‘what do you want me to do?’ My mum said ‘your bloody job, you have a teenager who is suicidal over pain and pmt and as far as I can see you don’t give a crap. She has exams this year!’ He the reluctantly prescribed the pill as they ‘don’t like to prescribe it long term’ I was 15. Omg it was life changing, very little pain, light bleeding, didn’t need to have a period if I didn’t want it…I got my life back. If they’d just done that 6 months previously it would have been so much better.

You've decided I've said certain conditions aren't "real". I have never said that. Have a read of what I have actually said and see how that applies to the OPs original questions and thoughts.

@HateLongCovid I'll keep this brief.

Research tells us crudely that the typical person diagnosed with fibromyalgia (I'll use this example as someone mentioned it up thread) is a middle aged woman, with concomitant mental health conditions, without further education. Furthermore, their symptoms overlap with other such illnesses such as chronic fatigue syndrome.

There will always be exceptions to this. But research tells us that is your "typical" demographic. You may look this up. It's not my findings.

Does this mean that those women are making their symptoms up? No.

Does this mean that their symptoms aren't real? No.

What do I interpret this to mean seeing as you asked in an accusatory way ?

I interpret this to mean that for the medical profession it is a nice comfortable diagnosis of elimination to give those women. It's a physical diagnosis. Most people with mental health problems, feel more comfortable (for many different reasons ) with a 'physical' label. It's validating - the medical profession realise this. I think I'd feel more validated by a physical diagnosis. There's still stigma attached to mental health diagnoses.

But are we failing those individuals by not exploring or treating, for example a possible case of depression?

Depression is serious and takes lives. It deserves respect and treatment.

It's much harder to treat mental illness. Patients often (understandably) don't like that label. So it's a win/win to apply a physical syndrome. Because illnesses like fibromyalgia as an example, are syndromes. That's factual.

I think you're not understanding my original point (perhaps because I haven't worded it well) in a nutshell OP wants to know 'are women taken less seriously ?" My response is "yes" and I theorised one example of why.

I'm not suggesting or getting into how other conditions are treated/ how painkillers are used. I mentioned a line on it to back up my theory. But I accept my post could have been worded more clearly.

All medical systems have staff who have bias and who make wrong judgements.

In terms of pain, it is subjective. I have back pain, many people do as they get older. 95% of people over 50 have degeneration in their back, often their discs. We get old. I do my physio and take painkillers as needed.

But I also know someone who tells me they have terrible constant back pain. And yet to look at her movements that does not appear to be the case. I believe she has pain, I do not believe it as bad as she says it is. I have met her and her partner for lunch, and then I have literally seen her skip down the road afterwards when we part. Meanwhile it is common even amongst very fit friends to see them get up stiffly and groan a bit after sitting down for a meal for a few hours.

It is because pain is subjective that Drs judge what patients tell them. And when people do that, bias comes into play.

Well for a start the muscular skeletal practitioner and the GP wouldn’t have suggested a general physio which made my pain worse and I don’t know if it did more damage or not. Surely it’s also obvious an earlier diagnosis would have meant I got to see a specialist surgeon earlier? Apparently I’m currently on the “urgent” waiting list but I don’t know how long that will be.

Lots of people (including myself in the past, hence why I didn’t head straight to a and e) think that Cauda Equina means almost instant (or very rapid) total loss of feeling in the lower body. Apparently it can sometimes be partial or very gradual- and they think that’s what my MRI suggests as I’m not completely numb yet, although I won’t know for sure until I actually get to see an expert. That is the NHS for you, and I know I’m supposed to be grateful.

It’s also well documented that women have to seek medical help 3-4 times when men only go once, reporting exactly the same symptoms.

Oh give over with this men and women nonsense. I know plenty of men who have battled to get any help too. You know one man so don't generalise. I think it's per area. Our area the GP is very good actually and 9/10 times they will give you a same day appointment and will always give a child a same day appointment. Referrals are done and appointments given quickly too. I really think it's the area

I think there’s something in this. My DH sent in an e-consult a few months ago when he had a (mild but persistent) cough. No red flag symptoms at all. He was given a next day appointment. (I can only think it must have been a quiet week.)

I requested an appointment for lump in throat, persistent sore throat symptoms - lots of symptoms consistent with throat cancer (thankfully it wasn’t). 3 weeks.

I'm afraid I have to agree with you Op. I'm glad you're getting some help now, but it is very frustrating. Worse than that. I've been referred to a pain clinic twice which I can say is just window dressing to be honest. They did sod all for me. Ive had hip, pelvic and coccyx pain for 16 years. At times I haven't been able to walk. But saying this to a GP doesn't seem to matter.

It is not just woman's pain they ignore, although I have to agree that the female doctors that I have dealt with over the years are more dismissive, and some are just plain nasty than the male ones. My husband was going to the doctor for hip and back pain for ages and his doctor kept telling him he had a sports injury. I went with him one time and told the doctor he doesn't play sports and asked how he could get an injury sitting on his arse? I set up an appointment with my GP (he is fab) and he took one look at how my husband walked into the room asked him to go out and come back in. Then said he needed to do blood work. We then got a diagnosis a horrible genetic one but my husband would be in a lot worse condition if we had stayed with his doctor.

I presume medicine is not absolute, if there was a machine that someone could stand in and it gave a definite result of what is actually the matter then doctors could treat that

But no I don't see how women get less answers than men

The utter disinterest of the NHS in women’s healthcare has almost cost me both my sisters and my mum in the last few years. Red flag symptoms dismissed as anxiety or stress when they have in fact been serious illnesses.

Then there is the abysmal care both my grandmothers experienced in hospital resulting in their rapid decline and premature deaths.

It’s an absolute disgrace and I have absolutely no faith in ‘medical professionals’ any longer.

I am so very sorry that you have gone through this @LilyJosephine. How awful and how frustrating. Your post is very timely for me as I am suffering with back pain after falling down the stairs and feel I have been fobbed off a lot. They won't x-ray me because they say if I had broken something, I would be in more pain and would be incontinent. How do they know what the pain is like for the individual? We all manifest it differently. This is aslo despite me telling them that the pain is unbearable. I have also been told that I can walk and get on with my chores, so I must be okay. I am a single Mum with two school age children so I have no choice but to try to carry on. Even putting a wash load on is so painful that I have to sit for an hour afterwards, in tears.

I hope that you can now get the treatment you need and deserve. I feel for you so much. We shouldn't have to 'prove' that we are in pain.

Hear, hear. I have been referred to a physiotherapist about excruciating back pain, and she told me it was likely to be 'stress'. So sorry about what you've been through.

Thanks to everyone who has shown their love and support on this thread - ❤️ right back at you.

Tbh, even though a part of me suspected it could be the case, I’m shocked at just how many of you seem to have had your or your loved ones symptoms (including pain) seemingly dismissed. Is it bad that it makes me feel better that at least I’m not the only one they ignored? (so it wasn’t just something I said or did that meant they didn’t take me seriously- because I can’t think what it could have been 😢).

To all those that have shared their stories, I hope things improve for you/your loved ones.

There are a huge number of women who are diagnosed with MH conditions following years of abuse. This trauma, presenting with the same symptoms in men is diagnosed as PTSD and treated much more kindly. The book Sexy but Psycho talks about this much more articulately, going into all of the ways that normal biological responses (if they present in women) have been medicalised and demonised.

There is also a connection between long term trauma and later life chronic pain, the nervous system can only take so much and the body starts to send crazy signals which is extremely distressing.

I went through years of waiting for tests and appointments and eventually got to a pain specialist who in the course of a lot of appointments signposted me to all sorts of articles and books to help explain to me that pain doesn't always have a cause. And that can't be fixed.

Physically I saw my GP in March 2023. Sciatica given pain killers the MRI, physio I sorted myself.

Saw GP last month lump in breast. Fast tracked to breast clinic. Others over the phone.

So twice ftf in two years.

I've now got bad stomach issues, phone consultation in January Omeprazole, gaviscon. Second month had to fight for more omeprazole. Now in third month still struggling again omeprazole cancelled.

Phoned surgery this morning spoke to reception. No appointments left at 9am is it an emergency. We're short staffed. I said yes. I'm tired of being nice. Husband had a chesty cough was called in same morning had antibiotics and steroids.

I think the NHS is good at dealing with things that might actually kill you, so RTA, heart attack, cancer etc.
However if you are in awful pain but it’s not actually going to kill you then forget it, they are not interested.

My daughter had extensive spinal surgery at 13. A few years after she started to get chronic pain. Wanted to be referred to a pain clinic to learn to cope with it. Guess what, all the pain clinics had been closed - to save money! (Scotland)
The GP was sympathetic (!) but could offer no help - for a 16 year old in constant pain.

Umm, not quite, been living with this since 2012, Cauda Equina, chronic debilitating pain, the stuff below my waist only works when it wants to.

I looked into when my consultant was a total cunt and treated me like shit.

Apparently they’re usually via charities for people with disabilities.

I would have willingly have paid for someone to help me but such a thing doesn’t seem to exist. I think there is a real gap in the market here.

This could be a job done by ex medical staff.