Aibu to ask you to tell me your experiences of being dismissed by medics as a sick woman? I promise to listen

[Graphista]

WOMEN NOT LISTENED TO BY DRS

I was thinking of maybe posting this in FWR, or health - but I've chosen to post it here because I think it's important and it affects ALL women not just those of us with a particular interest in FWR or healthcare.

It affects us, our mothers, grandmothers, sisters, daughters, aunts, nieces... ALL of us and I think it's a scandal it's not major news.

I've posted before about research I was shocked to read which said that women take 3-4 times LONGER to get a dx (including for non-specifically women's illness) than it takes for a man.

Due to discussion on another thread where @Helenadove kindly posted a link, I ended up doing some more reading - and I've barely touched the sides I fear!!

I really strongly feel this is an important issue that's being ignored.

www.the-pool.com/health/health/2018/43/Selma-Blair-multiple-sclerosis-diagnosis-MS-Instagram?fbclid=IwAR0kyme8FylvAYrpY3BNRi-ZCO4UJN5nzLMElYA9xQFcPJy3HMbl7QYCZHM

"Unconscious and conscious bias work together, to ensure that women's health complaints are minimised, ignored, trivialised and belittled. Female patients are told they're hysterical, hypochondriac, anxious or paranoid - that it is all in their head" - X 1000 if you have a mh dx!!

They even coin a term for it "healthcare gaslighting".

Venus Williams pnd pre-eclampsia and burst c section, blood clot

www.the-pool.com/people/women-we-love/2018/32/beyonce-and-serena-williams-show-vulnerability-in-vogue-cover-and-instagram-post

"As is so often the case for women experiencing pain, both the nurse and doctor dismissed her claims"

www.the-pool.com/news-views/latest-news/2018/7/Lily-Peschardt-on-Lena-Dunham-hysterectomy

Such attitudes are KILLING us:

www.telegraph.co.uk/news/2017/07/31/mother-died-paramedics-accused-faking-symptoms-attention-inquest/

Coroner: "Gross failure to provide basic medical care"

I'm allergic to the same medication.

www.independent.co.uk/life-style/health-and-families/health-news/how-sexist-stereotypes-mean-doctors-ignore-womens-pain-a7157931.html

"women are more likely to be given sedatives as treatment, instead of pain-relieving drugs"

And apparently it's the one time being good looking works against you:

"doctors subconsciously assume people who look ‘better’ on the outside, are healthier and subsequently require less treatment."

www.independent.co.uk/voices/period-pain-is-officially-as-bad-as-a-heart-attack-so-why-have-doctors-ignored-it-the-answer-is-a6883831.html

Shocking!

www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

I've had ovarian torsion too. Incredibly painful, worse than endo or labour and frightening because one second you're fine then next in a heap in agony! I was lucky, as I'd that already previously had an ectopic pregnancy (also less painful but I was worried it was happening again) and dx of the endo and surgery for same, the medics straight away assumed a gynae issue. But I know from 2 friends who've had the same that it could have been very different. One was assumed initially to have appendicitis, the other like the lady in the article kidney stones. Thankfully in time these diagnoses were found to be wrong but not in the general course of things but in one case by a neighbouring patient suggesting it, and the other the ct scan person suggested it - before doing the scan!

thenib.com/medicine-s-women-problem

Sonething I know a LOT of mners have experienced and a relative of mine too - again several YEARS of appointments and telling several Drs of the symptoms. That's UNACCEPTABLE.

So I would love to know your experience of being dismissed by hcps as "exaggerating" "hysterical" "anxious" rather than having your symptoms investigated, tests done and referrals made.

I'd also like to ask WHY don't Drs LISTEN to patients?! Especially women?! (And in my experience the female Drs can be as bad as the men!)

[GoopWrithing]

*HCPs

[Graphista]

OMG yes to being LITERALLY LAUGHED AT while in agony! Even tears! Compassion my arse!

" if this is happening to celebs/sport stars then I cringe, and seriously worry, of the general public." Exactly! People in a position to publicise such shit treatment. Us mere mortals have no chance!

Not saying it never happens to men not by a long way, but the stats do bear out that it's worse for women. Totally hear you on the mh though! Another mner on another thread (Helena may well remember - housing thread iirc) doubted me when I said that mentally ill are still very much stigmatised despite supposed more open-ness and acceptance (HA!). I responded again iirc with examples I've personally experienced - which inc being told a chest infection was "my anxiety talking" anxiety might talk it doesn't fucking cough and crackle!

Several high profile Drs have highlighted the issue, one of the articles I cited link to the dr who spoke out and pushed for it to be recognised that women having heart attacks present differently.

[Graphista]

"It's like Drs believe the wahmens don't know what pain is, what with all our wahmen problems" and yet my personal experience and numerous studies show that women generally have HIGHER pain tolerance - necessary for us to choose to have more than one DC! Except I only have the one, due to it would be too dangerous to have had more.

"It worries me the lack of empathy even a female medical professional offers to fellow women." 2 words - internalised misogyny!

Arabella - private healthcare isn't necessarily any better. Selma blair was hardly going to the local free clinic!

[lisalisa]

I feel I can beat all these . And with some nice racism thrown in to boot
When Ds was 10 days old he developed a fever . Mild at first and started making a terrible mewing sound like a kitten . Throwing his head back and holding his back arched against me
Rushed to doctor ( private pead ) to be told it’s probably nothing but possibly a cord stump infection - even though area looked clean
Given abs for ds to start
36 hours later with symptoms settling a bit was told to come off abs as cord sample clean
Did what doc said and 24 hours later feverback and high pitched continual screeching and back arching
Two more trips to A and E sent home each time
Finally back to same pead begging for help to be given a sympathetic head shake and gently rolling eyes and a lecture on fussy Jewish mothers who can’t relax - wtf !
Left in tears
That nearly cost ds his life
That evening the screaming accelerated and I went back to hospital telling them if they dismissed me again I was going to camp in the corridor and not move until seen by a different consultant
Cue one lovely young junior doctor from overseas just returned from a course on newborn meningitis . Took one look at ds and said IV Antibs now we don’t have much time
All I remember is being taken out of the room and asked to call other relatives to support me as well as any Rabbi or priest we felt appropriate
They didn’t wait for the lumber puncture result and within 10 minutesof her first seeing ds he was hooked up to an IV delivering medication
His life was saved with inches to spare
We were in and out of hospital for the first six months of his life after that with complications
I was called a fussy Jewish mother and told to try to relax into motherhood by a senior very very well known Harley street peadeatrician whilst cradling my ds who had full blown meningitis
It can’t get any worse can it

[Graphista]

Fstar - I've been having one meal a day for months, no weight loss, not big meals - still being told I must be eating more cals than I think! Yea must be all that invisible choc I'm eating!

Fstar - can I ask would your husband fall into another category likely to be dismissed? Ie dx mh, non white, non British? working class?

Rolly I hope you're getting treatment and doing much better now. Mental illness is a right bastard!

"Since GDPR came in they're not allowed to charge us for them." THATS interesting! Personally having seen some disgusting things written on patients records "neurotic mother" "hypochondriac" (GP not a dx) "time waster" the more transparency we have about OUR medical records the better!

[MoteOfDustInASunbeam]

Look into Blastocystis Hominis (a gut parasite ) as a cause of IBS redsummershoes. Usually missed in the UK.

[Graphista]

"My daughter had an undiagnosed dairy allergy when she was very little. It took me seven visits to the go, five visits to the walk in centre and two to a and e until a locus doctor said to me “this isn’t my surgery so i won’t think about the cost and trial some dairy free milk for her” " this thread came about in part due to a discussion on nhs costs. SURELY it's not just better for patients but CHEAPER to LISTEN to patients NOT dismiss them. Dx and treat rather than many GP and other appointments and treating the results of NOT dx and treating? I'm certain dx and treating my endo earlier would have been cheaper than treating 2 mc inc one part ectopic, ovarian torsion, bowel surgery, 14 years of tranexamic acid, painkillers, antispasmodics (for the non existent ibs), umpteen GP, nurse, sexual health, a&e visits?!

[ConfusedMum82]

Bless him DP just reminded me.
As I said, I left home at 16, have been NC with any family since 19 and the pill incident. Was in contact with my grandmother until she passed away 4 years ago (although it took 8 months for anyone to tell me she had passed away).
I was told we have a history of breast cancer in the maternal side of the family by her, and to tell my GP.
Now, DP's sister is a nurse, and she found out that as their family have a long history of bowel cancer, they need to be checked every two years. DP has been having these checks as a result for the last ten years. So I told her what my Gran said and she told me the GP would put it on my record to call me in for tests.
He refused.
As I couldn't confirm exactly who had had it, he refused to put it on my notes, or DDs notes.
A year ago, with nice GP I have now, I explained when I saw her about the cancer tests and how I had been told several years ago about my family history, but that I couldn't give fill details due to being NC.
She sent a form off to a genetic testing specialist in Oxford. She explained my situation, that my mother had refused to tell me full info, that we had no contact whatsoever.
They refused me an appointment.
They responded that as I wasn't adopted, I should just ask my mother.
I think the GP was more cross than me. She rang them in front of me, really lost her cool. She said this was a woman who didn't tell me for months my own grandmother and then later my grandfather had died (that one a friend read in the local paper and told me). Who had refused the chance to see DS when we were told he may die in SCBU (her words to the nurse who called her was she was dad to hear it but "that child is not my problem"- even nurse cried telling me).
They still refused.
So although it's on record that I have said about a history, it's not likely to end in an appointment or call in early. For me or DD.
Yet because DPs family can give uncles and aunts and ages, theyre called in like cloclwork.

[MoteOfDustInASunbeam]

I really think IBS is a diagnosis which means “Umm, we don’t really know what this is, our tests aren’t sensitive enough and/or we haven’t kept up to date with the relevant research, go away and stop annoying me woman”

[theluckiest]

I am utterly at the stories on this thread.

I still can't believe what happened to my MIL. She was admitted to hospital with chest pains just before Christmas last year. They monitored her, heart fine so they sent her away & said a routine chest clinic appointment would be sent through.

On Boxing Day she was admitted again. Ambulance called this time as she couldn't breathe. Heart fine but lungs looked suspicious. As an appointment had already been booked at chest clinic, she was then discharged at 5am with a prescription.

She could barely walk or speak. And was exhausted. So she didn't call us. The pharmacy wasn't yet open so she couldn't get her meds. She died of a pulmonary embolism less than 12 hours later...

To their credit, the hospital did an investigation and acknowledged that she shouldn't have been discharged. They have since changed the pathway for pulmonary embolism diagnosis / treatment.

Still, it's just mindboggling that the clinic appointment was scheduled the day after she had actually died.

[Ollivander84]

Oh and when telling a doctor I had autoimmune neutropenia
"That's a kids disease, you must have heard it wrong"
He then rang my consultant who went into a v quiet rage on the phone and said yes, she does, yes she's on medication and yes, she is the only adult treated for it in this entire department, I can forward you the antibody results tested by the only blood clinic in the UK that does them?
Doctor "ok so autoimmune neutropenia"
Me 

[LuvSmallDogs]

I nearly died because the midwives were so dismissive of my mother. She’d been rushed into hospital 42 weeks gone with really bad pleurisy. The MWs didn’t believe her when she showed them the meconium she was leaking, they reckoned it was just the plug. Eventually one MW realised things were going bad and sprinted to the car park to drag the OBGYN out his car and I was out the sunroof and in an incubator within 10 minutes.

My mother was called a “neurotic mother” to her face when she pursued a diagnosis for Dsis. She was told she was just slow to walk/talk, that Dbro just overshadowed her...no, part of her brain didn’t develop properly.

[PerkingFaintly]

Getting on the thread to make sure I read it. Sorry, I don't think I have the strength to post on this.

[MrsVietor]

I was refused a course of phototherapy for my lifelong chronic eczema because my GP discovered I'd been using a different moisturiser to the one prescribed to me (which made my skin 100x worse.

After having my first baby an HCP came to give me the anti-coagulant injection (which burns like fuck), didn't tell me what she was doing and rammed it into my thigh muscle without warning. Then laughed when I cried out in pain.

I had just showed a dozen people my vagina, and pushed out a giant baby, but that was the least dignified and most painful thing to happen to me that day. I've never forgotten it.

This thread has made me so fucking angry.

[Graphista]

Weathermonger I am so very sorry for your loss, that is so shocking, sad and outrageous. Sorry I don't have adequate words for you.

Loonoon - definitely not saying just women. And again I wonder if even though male he fell into another demographic frequently dismissed? But there's a lot of research showing it happens to women more. Thing is it shouldn't happen to ANYONE.

"It very much seems to be down to luck as to whether you’ll be seen by somebody who listens, or somebody who will treat you like a total hypochondriac" that's been my experience too - absolutely unacceptable!

Am I the only one thinking primary care hcps are noticeable by their absence on this thread?

"I ask for male doctors as I have found them consistently more sympathetic with regard to female health issues" again thats been my experience too! So much for talking with someone who SHOULD understand

"Sadly, I can see why a lot of people buy drugs off the internet, too." So can I! But that's putting people at more risk!

"I think it’s HCP’s don’t take into account that we put up with so many painful things that are ‘just part of being a woman‘ already. We are only going to complain of pain that is over and above that" exactly!

[BlaaBlaaBlaa]

This thread is so timely.....I've just returned home from an appointment with a specialist physio. I'm currently switching between anger and tears of desperation.

I was in a car accident 6 months ago. I've been in absolute agony ever since with a suspected herniated disc. Had to really push for an MRI scan. Got the results today and have been told the scan only showed a minor bulge which wouldn't cause the pain I claim to be suffering. Despite sitting there crying explaining how the pain is affecting my job and my mental health I was told it was probably my busy lifestyle and stressful job making the pain seem worse than it is!


A quick Google at home suggests I have piriformis (sp?)syndrome which mimics herniated disc symptoms. Something a muscular skeletal specialist should surely pick up??

[toomuchtooold]

I don't know why Germany is better - better funded healthcare, probably - but I spent 20 years in the UK getting lectures from successive GPs about antibiotics overuse and how they don't hand them out for just anything, then I came to Germany and after hearing me coughing in her office when I registered with the GP, I got referred to a chest specialist who diagnosed me with cough variant asthma and mild bronchiectasis (I had whooping cough as a child). I now have an inhaler to help with the coughing and a GP who is prepared to prescribe antibiotics for chest infections and codeine for nasal drip coughs, I'm also first in the queue for the flu vaccine. It's changed my life. I used to, every time I had a cold I would spend 2 weeks afterwards awake till 3am every night awake from coughing, having to wear incontinence liners because I was coughing so much in the day that I would eventually not be able to control my bladder. In addition I'd have one or two chest infections every winter that I would just have to hope I recovered from myself. I feel like a different person now.

[Djnoun]

I spent a week in hospital having IV magnesium and other fluids after my heart stopped beating properly due to hypokalemia. The day before I'd been told by my GP that it was OK that I couldn't eat as long as I could drink Ribena. I hadn't been able to eat properly in months due to an untreated stomach ulcer. I was six stone ten pounds by the time I ended up in hospital. I actually believed I was going to die. I was admitted to hospital with a resting heart rate of 170. Here's a picture of what I looked like when I was trying to get help.

[beachgoddess]

Not me but my mother in law. Had bowel cancer and had treatment and recovered. Started feeling unwell again under two years later. Three times the GP said to her it was just stress and anxiety related to her relationship breakdown. No it wasn't. It was a recurrence of her cancer and it was too bloody late by the time they discovered the tumour in her liver.

[WakeUpFromYourDreamAndScream]

A doctor blamed my recurrent conjunctivitis and blepharitis (I didn't know what it was at the time) that was making my life such a misery for a year I often thought about ending it all, on being overweight and feeling 'down' about the weight.

I finally saw a woman Dermatologist and got appropriate treatment which changed my life.

[TooManyPaws]

I'm lucky with my current practice but have been left with bladder problems as a result of infections which weren't tested for at my previous practice, even though I was even given an internal scan to find out the cause of my abdominal pain... My current practice picked it up the first time.

I've been suffering with chocking on food for several years now. It's as though things are getting stuck or my stomach isn't opening up for them. I have a mild hiatus hernia but apparently that can't be the cause. All sorts of tests but I got discharged from the specialist when I pointed out that several of the things I was supposed to avoid on his recommended diet actually settled my stomach and others that I was supposed to eat gave me severe pain. Apparently I just have to live with chocking and making myself vomit at least once a week to clear my gullet. 'But why make yourself vomit!?' Because it's the only way I can clear my gullet and stop choking and hiccuping and throwing up whatever goes down after it, you over-qualified idiot.

[TooManyPaws]

FFS autocarrot, it's choking - chocking isn't a bloody word!

[GraceMarks]

I was unable to get help for bulimia for several reasons, but the main one was that I was at a "healthy" weight or slightly overweight for the whole time I was suffering. I was told that treatment was only available if my BMI was below 16, which was never going to be the case. It basically felt like I was being told that all the dangerous behaviours I was engaging in didn't matter because I wasn't skinny - and this at a time when I was taking anything up to 40 laxatives per day and experiencing heart arrhythmia. In the end, I paid for a private counsellor but I couldn't afford to do it for very long and I still have problems to this day.

[Crispyduckskin]

It makes me so sad and angry reading some of these posts.

I went to my gp in 2012 worried about a raised patch of skin on my nose that was bleeding spontaneously, my concern was skin cancer. I was dismissed out of hand and told that it was perfectly normal and nothing to worry about, I must have scratched it in my sleep!!!!

I've mentioned it to the same gp numerous times since, especially as it was growing and still bleeding every few months. Still made to feel that I was paranoid and making a fuss about nothing, I tried to push for a referral to a dermatologist but was again dismissed.

Fast forward to a few weeks ago and I saw another gp, it was bleeding at the time and she said she could say with 100% certainty that it was a basal cell carcinoma, she then asked me why I'd let it get so big before seeking medical advice.

I've now started treatment and have the equivalent of a third degree burn the size of my palm covering my nose and part of my cheek, i will need follow up radio therapy and a referral to plastics once it's all done. When I first went to the gp it was about 3mm x 4mm, I'm now disfigured for life.

[minivampsmakebloodwork]

I agree with others that It's not just female patients, it's women in general. I had this happen to me when we were struggling with one of our dc's. Because I am a sahm I am the one who has been present for every single appointment. I have been diagnosed with pnd and of course that was the problem. Not the fact that my 7 week old was screaming constantly and had a hugely ridiculous temperature (viral meningitis), wasn't well enough for all his 12/13 month injections ( acute tonsillitis, ear infection and general viral infection resulting in a hospital stay after his 12 month jabs were given. The hospital were furious).

Then the ongoing issues which are possibly as a result of the viral meningitis. Until dh was able to attend appointments we were dismissed as me being a neurotic mother, unable to cope etc. Nope. Several years and many, many referrals and discharges, we have a diagnosis of adhd and are likely to get one for autism soon too.

But no, I'm just a neurotic woman who needs to get on with it. Amazing how his dad reported the same things and was listened to...