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 passed out in A&E at 3am after five and a half months of telling my gp I was in pain and it was getting worse. By the end of 5 months I had a raging abdo infection and sores all up my back.

Then having an emergency op to remove an ovarian dermoid the size of a grapefruit, losing an ovary and tube, and spending a week on women's surgical and 6 weeks off sick.

My then GP finally came to see me and said "So there was something wrong with you". He couldn't bring himself to apologise though. Patronising arrogant tssr.

One of the most fundamental, "misunderstandings" seems to be that when you are:

In severe, sometimes chronic or long term pain.

Have had to wait ages to see somebody. AGAIN.

Tired and frustrated with having to explain and repeat what is wrong with you AGAIN.

Tried several approaches from "Oh Doctor, thou art my God" to, "Hey mate, we're all in it together, hope you had a lovely Christmas!" and everything in between.

It's really starting to affect you financially now and you are getting worried about how long you can pay the bills.

And so on and so forth...

They jump to the obvious conclusion that you are anxious and depressed.

To quote Vicky Pollard, "Well yes, but no yes!"

Round and round in circles we go on the patronising roundabout. I had it again last Friday. I've finally got my diagnosis after more than ten years. Late stage Lyme Disease and anaplasmosis.

I was getting somewhere last year but my sympathetic and intelligent, (young male) GP has left the practice and I'm having to start again with my referrals etc with a right know it all locum. (Who might get his old job permanently.)

She sees the chicken, I see the egg. Or vice versa. So we're back to anxiety, depression, and me being, "Non compliant and aggressive."

This is in France btw, so there's no grass that's greener over the Channel. I hate to think what she's written on my notes after last Friday's débâcle.

It's not the language. I've been here 26 years since I was 23 and always integrated and worked for local businesses. It might be cultural although if I can only get to go over her head to see Polish Agnetha the infectiologue at the Big Town hospital again, no language or cultural differences will seem to occur.

She's great is our Polish Agnetha. They seem to stymie her at every turn though.

I'm just going to have to bite the bullet and pay up to her privately aren't I?

I'm still seething really. The best part was when after about fifteen minutes of being at completely cross purposes, me trying my best to as said previously, explain and repeatedly explain.

"Do you have black thoughts? Do you have suicidal ideation?"

"NO!" (I sounded like Ian Paisley then. I momentarily gave up on French.)

"We can get you a pretty little treatment for your morale. And social worker."

"No thankyou."

"Let me examine you." She took my blood pressure over three layers of thermal vest, thin jumper and thick jumper, then saw me pressing my face and eye sockets in desperation and Lyme related neuralgia and alighted on a new diagnosis.

Sinusitus.

So, crazily, I do actually have some antibiotics which could potentially help the Lyme but it had to be for my nose ache.

This.

That explains a lot!

Sorry if I wasn't clear. It must be my black thoughts.

My crazy plan was to get some proper pain relief for the poly arthritis and rheumatic pain than wasn't just over the counter paracetamol or ibuprofen that's in my hands, one knee, both ankles and my face. Well, all joints really - and an interim script for doxycycline to control the borellia a bit so I feel strong enough to fight another day.

Not top myself.

DH had to call to get anyone to believe my severe PND that was causing me to be genuinely suicidal was anything more than just me being a bit down.

i’m taking DH to my next gastroenterology appointment as I feel I need a man there to be more forceful - I felt very dismissed at my first appointment and wasn’t given any opportunity to ask questions after test results were given.

I’m really struggling but the GI says ‘we’re not worried’ ok, I may not be dying but my life is massively impacted from this and I need some answers - even try first level treatment to see if it
helps.

Also had a seizure and loss of consciousness two years ago. Had already experienced some weird symptoms but infrequently and was dismissed. This time DH took me to A&E - don’t even ask about the call handler suspecting a stroke but saying there were no ambulances. After tests and several hours’ wait overnight the ‘baby’ Dr decides it’s cardio in nature even though I had obvious neurological symptoms. I had to put my food down and insist on a CT scan- thankfully it wasn’t anything cancerous but a few months later I saw a neuro and was diagnosed w epilepsy (tbf I have a great consultant for that so they’re not all misogynistic pricks).

Paid privately. I’ve put a letter of complaint to the surgery

I make an appointment before things get too bad, if necessary by over-stating the pain. As always, you get completely fobbed off the first couple of times, but by drawing a line in the sand by having an appointment on record, they take you more seriously when you get another appointment a few weeks later, and again a few weeks after that. Shouldn't be that way, but you have to play the game when it comes to the national fob off service.

We learned the hard way with DH who must have been for a dozen or more GP appointments over a couple of years, constantly being fobbed off, until he finally saw a random locum who actually listened and referred him for a specific blood test. It turned out he had a rare cancer and all the symptoms, pains, etc he reported to the GP over those two years were clear signs of his specific cancer - succession of GPs simply didn't take him seriously. Morons! It's not as if he was a regular beforehand - probably no more than a single appointment every 5-10 years so they should have realised something was wrong when someone they barely see suddenly starts making appointments, almost monthly!

After that, we both "play the game" if necessary and it works a lot better. They can't fob you off (and more importantly can't justify fobbing you off) when you've made repeat appointments for the same thing.

On being so unwell I couldn’t walk I talked on the phone to a male GP in my practice who sneered at me, told me I was making a fuss, that I had seen the best doctor in the country for a treatment I’d had, a treatment that hadn’t worked. I stood my ground to get an appointment with another GP in the practice, this time a female one. She referred me and I was diagnosed with a serious long term condition after spending 2 weeks in hospital.

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

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.

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

Issue
Concern
Expectation.

Thankyou.

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’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 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!

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 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.

At least it's not 6-7... 😉

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.

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...

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 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”

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 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