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

[RhiannonEMumsnet]

Hi there,

In January we’re launching a new Mumsnet campaign to highlight and tackle medical misogyny - the all-too-common experience of women having their health concerns dismissed, minimised or ignored by healthcare professionals, often with serious consequences.

As part of the campaign, we want to shine a light on the extraordinary lengths women often have to go to before they’re actually listened to. So we’d love to hear from you:

What have you had to do to get a doctor (or other HCP) to take your pain or symptoms seriously?

If you’ve got a story you’re willing to share, please do post below and help us to show the scale of the problem and why change is so urgently needed.

Thanks,
MNHQ

I told my Dr I was in lots of pain and,I suspected it was gallstones,he told me I wouldn't be sitting there like I was if it was gallstones,it was latter confirmed that yes I had gallstones.

I ended up putting in a formal complaint, got referred and left the surgery

Pay thousands, privately.

I was correct to do so.

I had to almost die before they removed my gallbladder, I had a week long flare up and couldn't stand straight. I went to my drs surgery to discuss some (unrelated, I have hypothyroidism) blood results. The practitioner asked what was going on and I explained, then collapsed. She called 999 and gave me a pain killing injection. I spent 9 days in hospital.

If you find out let me know 😢

I had all my symptoms listed out alongside the list of symptoms of my condition - endometriosis. When he didn’t want to refer me I said ‘Please can you write in my notes that I have all of the symptoms and you are refusing to refer me’ - then I was referred.

The waiting list for surgery was years long so I went private and I had stage 4 endometriosis which is the worst. I paid around £5k for surgery.

I suspect my fertility would have been damaged if I had waited for the NHS, I’m lucky to have two children.

For me years of repeated appointments being fobbed off with IBS finally diagnosed with severe endometriosis. Had two unnecessary CT scans. One to rule out kidney stones (symptoms nothing like kidney stones) and an abdominal CT which GP eventually admitted was the wrong scan to send me for and should have been referred for an ultrasound sound.

I had to pay privately to see a GP initially just to rule out possible infection.

I will say once I got past the GP and finally referred to a gynaecologist I didn’t have to push and fight any further but strongly believe that was down to me choosing NHS pathway at a private hospital. Meant all appointments and operations have been an hour away from home instead of ten minutes drown the road and still a year long wait between ops but finally have a diagnosis and treatment plan.

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The problem is even if you find a sympathetic GP, their hands are often tied by the outdated NICE guidelines.

There are many things that affect mainly females - ferritin folate, B12 etc that are woefully marked as ok according to NICE but anywhere else would be too low and treated.

Many people have to turn to forums such as health unlocked and Facebook groups, self inject or supplement to feel even vaguely human. Until practices are overhauled- particularly those that affect women, nothing will change.

Many symptoms are not properly investigated - fibro being a common diagnosis when whilst it is a perfectly valid diagnosis, it should only be given once everything else has been ruled out or investigated. It's easier to send the woman away with anti depressants and an easy label instead of actually looking just to whether it could be anything else.

If you get past your GP with a referral, you then face the same level (or worse) of dismissal from a registrar or consultant.

I have to tell them I have a PhD. My PhD is nothing related to any medical field but suddenly they talk to me like a man person rather than at me with an eye roll.

Either that or I bring my DH along to act as a golem so they can talk to him instead about the pain I am experiencing.

I had to go private.

A friend has very veeeeeery bad migraines.

Many neurology referrals etc, nobody took her seriously for years and one doctor remarked that as she replied 10/10 when asked how bad the pain score was out of ten it can’t be that bad becaue most people reply 12/10 if it’s really bad!

She is a maths teacher. She is fundamentally unable to utter the phrase ‘12/10’ :-)

I have severe endometriosis, it took years to be taken seriously about the pain. It was a real battle. I finally ended up under a specialist centre who found it quite hard to manage as it was so aggressive. Was under pain team and waiting to see them again as pain unmanageable. Specialist centre well aware what pain killers I was taking (codeine and tramadol etc). Asked for appointment at GP to also discuss pain management. GP suddenly decided not to prescribe painkillers for me as I was ‘taking too much’ so just stopped it dead. I wasn’t taking more than was prescribed and they were well aware that I was under the pain team and the specialists. Sorry I know it isn’t quite what the question was but it makes me so cross. It really was an absolute battle to be taken seriously (another story). I ended up infertile. Makes me sad and angry. I also weaned myself off those painkillers and amitryptiline when pain was better, I didn’t want to take painkillers I was just trying to carry on working and cope with the pain as best as I could

I have chronic migraine. I was sent away by a GP with a recommendation to take mini aspirin daily and stick to 6 triptans a month - which meant I could only treat 6 attacks out of over 20 a month. He wasn't listening.

I printed out an A4 diary for size month and colour coded in highlighter pen the good days (no attack), medium days (attack, but I can function ie work) and bad days (attack where I can't function or work) and took it to my next appointment a month later.

He looked through it, was visibly shocked and said "but that's more days of attacks than not". Yes says I, I've been telling you this for months and asking for help.

Finally got some preventative meds!

I was basically told my symptoms were in my head. I had blood in my stools but was told it was just haemorrhoids. The blood was dark and actually in them. My husband had recently died of cancer which the consultant mentioned and he thought I was imagining my symptoms. Sent me for a colonoscopy "to put my mind at rest but there's nothing wrong with you". I had a polyp which a different consultant told me was one stage away from turning cancerous.

Same

The gp who prescribed me an inappropriate birth control pill (I found out subsequently that she had put me on one as my first pill that you should never give anyone as their first pill) refused to concede there was anything wrong with me when it started to poison me. I was off school, exhausted, hadn't picked up after a bad cold weeks before and was listless. She implied to my mum - in front of me- I was probably just making it up to be sent home and get out of doing any work for my A-levels. Luckily I was a weekly boarder so we called the school and their GP took it seriously and found my liver was seriously out of whack.

I have GAD and dread going in for anything now because it's a golden ticket excuse to explain away anything bar visibly hanging off limbs. Need to book an apt soon to discuss possible endo and I'm taking my husband so that he can describe the flooding, the monster clots, the exhaustion and how much pain he is able to see I am in - and prove it's not just all in my head.

I had a history of blood clots in my leg and it felt like I had another one. Doctor measured both legs, 1 was only 1cm bigger than the other so he decided the difference wasn't enough for it to be a clot so sent me home with the diagnosis of a probable invisible varicose vein . Further pain had another doctor sending me straight to A&E 2 days later, 2 clots found.

Also had a doctor tell me the strange taste at the back of my throat (that was happening a few seconds before one half of my face went tingly) was probably just a cold, as she couldn't see what else it could be. I had to get a private neuro referral - it turned out I was having seizures, caused by a bleeding brain. (Was in surgery hours later).

Thanks for doing this. It is such a serious issue with potentially deadly consequences for women. I'm really glad you're highlighting it. I've had all the depressingly common experience of awful maternity and post natal care that we are somehow conditioned to just accept (if I was crowning in the carpark of Watford General I'd crawl to the next hospital rather than give birth there again) but it's my experience with chronic illness that sticks in my mind the most.

I have a neurological disease called Chiari Malformation and syringomyelia and a VP shunt in my brain due to a blockage of CSF that caused high brain pressure. When I was in hospital the last time, a male orderly taking my blood pressure said 'women have too many rights'. I told him to leave my room and he refused to go. I complained and didn't hear anything further.

The same hospital never sent MRI results etc to my GP.

One of the (many) symptoms I have is really severe headaches due to increased pressure. I asked my male GP for help as it was at one stage impacting my life to such an extent that I was going mad. The GP told me to download a mindfulness app and was so dismissive that I cried for hours, mostly with frustration and rage.

I now see female doctors where possible and it's a big improvement when it comes to being listened to and not treated like a nuisance. But overall it's my belief that misogyny is deeply embedded into the medical profession, especially in surgery.

Went privately, had to see 5 different private doctors before I got help. Cost me thousands.

The worst GP I have ever seen was a woman. I needed a surgical abortion and she was a real bitch about the referral.

The best I've seen was a young male trainee GP - he got me the neurology referral I'd been begging for for years.

Slightly different but my husband spent 15 minutes begging the 999 call handler to send an ambulance because I was having a heart attack. They had obviously decided I was a silly woman having a panic attack (I was having text book symptoms following initial acute back pain which radiated to jaw, crushing chest pain and down left arm). They insisted that somebody would call me back within 2 hours and meanwhile I should self administer sips of water. Eventually they grudgingly agreed to send a first responder who thankfully was in the area. I was blue lighted to hospital, straight into resus, then straight to angiogram and stent. That call handler could have cost me my life. The nurse on the CCU told me that if I had been a man with those symptoms they would have sent help straight away. We have known for decades that men with cardiac pain are taken more seriously than women.

Twice I’ve led with “this is ruining my sex life” after I’ve initially not be taken seriously. It’s so frustrating that my DH’s sex life being limited is what they seem to care about, and not how life limiting my problems were.

I learnt similarly, years ago, to introduce my professional status and possession of several degrees early in the consultation. It usually resulted in my getting a proper conversation about my symptoms, etc.

It took me years for my perimenopause to be taken seriously. I was at absolute breaking point, trying to hold things together for too long and the effect on my career has been really bad. Within hours of starting my first estrogen patch I felt truly amazing. I was exercising, tidying my house, chatty with everyone, my constant headaches and migraines disappeared.

I could cry at everything me (and my family) have endured. So many lost years.
What finally worked was being 44 years old when asking for HRT, and it being my fifth visit.