AIBU to ask what you’ve had to do to get a doctor to take your pain or symptoms seriously?

Honestly? Crying seems to work for my doctors…which annoys me intensely. Being stubborn was also useful, I only got referral to 2ww when I clearly stated to receptionist that I wasn’t prepared to accept their answer, that I needed to speak to someone face to face. It scares me that so many women would accept being fobbed off and thus miss out.

I saw the male 30 something GP who wears his shirts too tight so we could all admire his bulging biceps. I explained I was exhausted and woke up feeling worse than before I went to bed.

(It was bruxism that was creating neck, head and shoulder pains and was leading to the exhaustion).

Bicep GP told me it was just life and my job as a teacher making me feel like this and that I should try my being him and a GP! He then sent me on my way!

I saw the head of the practice next time (a man who did help me) and I said what Biceps had said to me. The new GP said, “Oh he likes to spread it around.”’and left it.

Biceps also does private work - I expect I’d have been properly checked out and listened to by him had I paid for the appointment.

What have you had to do to get a doctor (or other HCP) to take your pain or symptoms seriously?
I had to go private for a second opinion and the eventual diagnosis, I was dismissed as having anxiety for months, it was cancer. This has happened on a number of occasions now, as the misdiagnosis of anxiety is in my health records, but obviously, that was the most important missed thing.

Twice now I've self-referred for private consults after my GP failed to take my symptoms seriously, and minimised or failed to mention reported symptoms and clinical observations in referrals to NHS specialists.

On the first occasion, I'd been visiting GPs for over 25 years with odd and escalating allergic reactions, none realised (and I had no idea) that I had been having anaphylactic reactions as they weren't presenting as they thought they should, and I wasn't dead. Eventually did my own research, learned about a very rare allergic condition, sought private bloods which seemed to support my conclusion, saw a top immunologist privately, confirmed I'd been having anaphylactic reactions, instant diagnosis and congratulated for my research.

On the second occasion, saw GP about very obvious inflammatory arthritis symptoms, his referral to rheumatology was so bad it was refused, the second was barely better as he didn't include any of what he'd actually seen (swollen joints etc) and was very much "patient thinks she has this, I'm doing this referral as she's a bit arsey and it saves me having to talk to her again" so what should have been a priority referral was shoved to the "might get an appointment one day" list. Saw a very experienced rheumatologist privately who recognises the problems women have being taken seriously and, again, instant diagnosis. She then wrote to GP and rheum team stating the "obvious" diagnosis and urgent need to start treatment, and 6 weeks or so later saw NHS rheum and diagnosis confirmed.

What really frustrates me is that I never go to the GP unless it's something serious, so they have no evidence to suggest I'm a malingerer, yet I get treated as one.

I think one of the issues is doctors think we are just looking for a diagnosis. I have specific symptoms that are very indicative of X Syndrome (don't want to say what as too outing). Tests for X Syndrome were negative so Rheumatologist said - there are thousands of possible causes of my symptoms and as it's not X Syndrome I am discharged.

I have other symptoms (widespread pain) which I suspect are connected to my other symptoms but nobody is joining the dots. I get the impression that the doctor thinks that I am looking for a diagnosis/label. I am only looking for a label or diagnosis in the hope it might lead to treatment.

I had many warts and verrucas, the doctor wouldn't refer me to a clinic. I asked many times as they spread, but the doctor said no funding to treat them and they wouldn't refer me. I couldn't afford private treatment. So I cut them all off myself at home with scalpels and scissors.

Where to start… a relative had to pay for my MRI after weeks of excruciating pain and being unable to lift one arm as neuro and MSK kept bouncing it off between them and refused to help. Only then did they agree there was a serious issue and put me through to spinal specialist.

I’ve also turned up at my GP with an A4 list of symptoms for other health conditions as was being palmed off. “Don’t you think we are doing enough to help?” Er no… because you have not actually done a single thing to help.

Been sent home numerous times (by male doctors) with ‘glue ear’ over a week and made to feel like a faker until my whole ear canal swelled shut so much that no antibiotic drops would even get in there and I drove to hospital and the consultant couldn’t believe I’d driven myself and wasn’t in tears and considered keeping me in overnight.

I have a high pain threshold so they just assume you are fine. Found a spinal fracture nobody did anything to help with either. Healed wonky.

To get a referral to a Pain Management Programme, I had to describe in some detail to the rheumatologist how I had researched the services of Dignitas. He then asked my GP surgery to refer me onto the Pain Management Programme (a primary care service apparently) which they finally did.

So basically, I had to say I’d had enough of living.

In happier news, the Pain Management Programme was very good. Talking therapy, physio, gentle movement, group talk and bonding, mindfulness, and planning for flares etc. I’d thoroughly recommend it to people who have exhausted all other avenues. It’s brought me back to myself in so many ways.

For my main (back) issue, it took ten years, four ‘specialists’ and a dozen emotion outbursts from me to get a diagnosis. I am on so many painkillers I rattle, everything possible and more than most doctors are comfortable with but don’t worry, I’ve got a letter from the pain clinic saying that’s ok and keep doing the same thing so it’s all fine.

To get my diabetes diagnosis, well that took two miscarriages, sadly. The second one was dramatic, 16 weeks pregnant and I had a haemorrhage so they kinda investigated then… weirdly maybe but I was ok with that second, late, miscarriage, the first one I had (at only 5-6 weeks) was a total shock and trauma, I was poleaxed by it for two years.

To get my wheelchair and mobility aids etc has been fairly straightforward after the back issue (finally) got diagnosed!

I still haven’t found a way to have pain taken seriously!
Ive had my pain dismissed many times. Pain consultant was lovely when 1st met him then developed fibro symptoms 2 years later and he treated me completely differently, was only concerned about my husband not being able to have sex when he wants so I would lose my family if I carried on this way, everyone else has to keep going and working if still in pain (I literally could hardly walk). I sat and cried while I had to listen to him going on about his bad back!
2nd opinion female consultant just laughed at me , she didn’t believe me it’s not possible blah blah, i said I’m not lying it’s there on the Endo specialist letter. Didn’t like that I had shown her up in front of people, didn’t talk to me for rest of the appointment, spoke to physio about me like I wasn’t there and said well whatever she’s deconditioned and I gave up.
Now I only go to GP if I’m desperate and don’t even mention fibro, as far as they are concerned Endo is gone but it isn’t.
Pain management course was same lots of fibro ladies told to practice breathing, mindfulness etc 1 male person with injury related pain treated totally differently

Although can I also add my (male) cousin?
I thankfully was listened to with back pain, given pain relief and developed cauda equina and had emergency surgery

he wasn’t listened to, wasn’t scanned, was desperate and accidentally overdosed on painkillers trying to help the pain. He died from the overdose age 33, almost 2 years to the day I had my spinal surgery

I had to change doctors

first thing was constant illness and infections. Blood test after blood test. It took a locum GP to do more bloods, open my previous ones and then ring me at night to tell me to go to hospital now. My neutrophils were 0.3, I couldn’t fight any infection and I finally got a diagnosis

second thing was saying I thought I had endometriosis. They shrugged and said if I didn’t want the pill, nothing they could do. I had enough and changed doctors
ended up screaming in pain many many times
they sent me for an ultrasound and an MRI and referred me to gynae. Even then I was fighting for pain relief and people thinking I was drug seeking
It took the specialist 8.5hrs to remove all my stage 4 deep infiltrating endo and the bowel surgeon 3hrs to fix my bowel that was folded in half, they had to separate my ovaries from my pelvic wall, remove endo from my bladder. I think I said “I told you it hurt”

A&E.

I've had 2 life threatening events - a huge DVT that ran from my femoral vein to my ankle and abdominal internal bleeding. Both times my GP sent me on my way.

For the DVT I went to my GP 3 times in a week and was told to stop wasting his time. I'd just had a baby and I felt like shit. My leg ached like hell and I had lower abdominal pain like I'd never felt before. He said feeling pain after childbirth is normal - it was my womb 'going back' and what did I expect? If I'd just got off a long haul flight I have no doubt that he would have sent me for blood tests. Yet - having a baby carries a higher risk of DVT than flying. I still can't work that one out.
I returned home in tears. DH had had enough .. he took me straight to A&E and the triage nurse took one look at me and wheel chaired me straight into resus. It got so bad that at one point the consultant told they were considering amputation. Fortunately, that didn't happen but I did have to learn to walk again and spent a month in hospital. The damage was done and I've been left with abnormal circulation and a big leg. If I'd been listened to and treated sooner none of the above would have happened.

For abdominal pain (internal bleeding) my GP (a different one) diagnosed IBS that was caused by anxiety. Told me to go home, relax, and do some breathing exercises. I didn't go back for more words of wisdom - this time I went straight to A&E. Again I was rushed straight to resus.

Gut feeling is an instinct I don't ignore anymore.

I took myself to A and E with what I suspected was appendicitis one evening (had seen both my sisters and one of my children with the same diagnosis and was pretty sure I was following the same pattern). Spent an agonizing night on a hospital trolley with generalized pain around belly button, low grade fever, nausea. I told anyone who would listen I was sure it was my appendix. The male medic refused to scan me or give any painkillers other than paracetamol as i had little rebound pain. I explained about the family history and having a high pain threshold but it was suggested i was suffering from anxiety induced IBS (because I'm mentioned I'd had some gut issues since my gall bladder removal - even though I was experiencing a completely different type of acute pain.)

Later when I asked for stronger pain relief as the symptoms worsened it was suggested I was drug seeking (I was a middle aged mother of four with no history of substance abuse, had never even been prescribed opiates other than once for gallstones 10 years earlier and would have been happy with a paracetamol drip). The next morning I was discharged and was so uncomfortable and exhausted I agreed because I just wanted to go home and sleep.

I spent the day in bed pretty delirious and woke up in the late afternoon experiencing rigors. My husband called an ambulance when the shaking wouldn't stop - my temp was over 40. The male paramedic said I was just having a panic attack and needed to calm down. Luckily his female colleague insisted I was admitted. By the time I got to hospital my appendix had already ruptured and I needed emergency surgery. My insides needed to be washed out and I required intravenous antibiotics for five days as I developed peritonitis and was showing signs of sepsis (very low blood pressure).

I was in hospital for over a week, unwell for another and my recovery generally was much longer than it needed to have been - if only I'd been listened to earlier and scanned in A and E...

I don't know how much being a 44 year old woman shaped my treatment, or whether being treated by a female doctor would have changed the outcome but anecdotally when my husband presented with similar symptoms in A and E a few years later he was offered a scan pretty much straight away (it turned out to be nothing, thankfully). But it was quite striking how his pain was taken seriously immediately compared to mine...

This... and if the same paper has a question about a male farmer that turns up with a bit of a twinge, they invariably need to be in resus.

At least it's not 6-7... 😉

I went to my GP in tears with back pain. I had struggled for weeks. Asked to be signed off (had never in my life been signed off sick from work before but was struggling). He begrudgingly agreed and suggested I was malingering and if it was him he would just get on with working. I later paid for a private MRI via a referral from my lovey chiropractor and it confirmed a herniated disc. Arsehole.

Same here, saw and out of hours doctor who sent me home telling me to take buscopan for billary colic. Less than 24 hours later I was admitted to hospital with gallbladder empyema and suspected sepsis, had emergency surgery and was in intensive care for a week. I do suspect that I don't externalise my pain all that much compared to others I don't cry out or groan even though I can be in a lot of pain, I don't know why that is but I think my demeanour might make people think I'm not in agony when I am. Surely my word should be enough? I'm sure it would be for a man.

I won't go i.to specifics about what happened to me due to it being very outing. I experienced medical negligence of a gynecoligal nature. I tried multiple things including surgery to try and fix the issue but I needed a hysterectomy. For over a year I fought for myself and the thing that made the difference was my husband coming to an appointment and telling the consultant that my difficulties were impacting him. I was booked for a hysterectomy 2 weeks later. This was pre-planned by myself and my DH as I had tried everything else my DH only concern was what I was going through we were both speechless when it worked. It is even written in my hospital notes!

I’ve been thinking of typing every example but I’d probably lose the will to live.

A lot of posters mention how you are perceived. I feel this has been my case too.

GP who didnt know me, my career, my qualifications suggested anti-depressants every visit and at one point perhaps ‘a spa day’. I refused and it all went down hill from there. I asked for a referral and perhaps some tests and scans. All ignored.

I am actually really very very broken with endometriosis, very early onset menopause and a torn rotator cuff.

I changed GP for obvious reasons.

New GP knows me as DDs mum, we met at nursery drop off. Is aware of what I do (scientist), who I work for and how qualified I am. I am actually now taken seriously and spoken to in a way I am happy with.

It might be misogynistic, but I think there is a lot of medical snobbery involved.

I am in my 60s and can only think of two occasions ever where I had an issue with any kind of doctor. One was in pregnancy. I think a few doctors are bad eggs, but also plenty of patients have ridiculous expectations. The government has a part of play, with the endless cuts to medical services. It’s worth knowing that just over half of doctors are women.

I think that you've framed it very well here. For future reference:

Issue
Concern
Expectation.

Thankyou.

I remember working with a man years ago who was pretty middle class. He told me that not only did he accompany his wife to Doc Appointments, he would always wear a three piece suit. He was adamant that it made a huge difference. I really don't want to bring my partner into the doctor with me but I can see from what is shared here, it works.

I listened to Dr Amir (sp?) on a podcast where he was asked how can you get a doctor to listen to you. He said doctors should consider their patient from the perspective of Issue, Concern, Expectation. He suggested if they don't ask these types of questions you should provide the doctor with this information.
I find the Expectation is difficult to articulate.

Maybe it's like going to the police. Always have a witness, or an advocate. Somebody who can back you up.