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!)

[CallieCat19]

Last year I had an ectopic pregnancy. Had severe abdominal pain for days (to the point I could speak or move) and had a positive pregnancy test so after some googling was pretty sure I knew it was an ectopic and the advice was to go into a&e strait away.

I feel like I can’t complain because I was diagnosed within 2 days but I had to see a lot of different people and had to explain myself a lot and got a lot of rolled eyes when I said I googled my symptoms and this is what I think is wrong and I overheard staff making comments about how I thought I was an expert because I’d used google to self diagnose.

It’s not that I thought I was a doctor or anything but it’s the only thing that matched my symptoms (and I turned out to be right) just was hurtful to hear comments being made about me when I was a genuine case and in a lot of pain!

[bakereld]

When I was 13, I developed the worst pain I've ever felt. Shooting pains down legs and lower back, horrible pelvic pain, throwing up multiple times in one night, sweats, pins and needles, numbness, heavy bleeding. This repeated every month around the time of my period, gradually getting worse. The third time it happened my mum took me to A&E - doctors dismissed it as a stomach bug. Next month it happened again as usual, mum took me to A&E again, doctors dismissed it as 'usual' period pain and sent me home with pain killers. Obviously my mum was really embarrassed the next time I said I needed to go to hospital, as this was my third visit in as many months, eventually the drs decided to do some tests - they found I had an ovarian dermoid cyst 18cm x 18cm! It had twisted my ovary, was pressing on my other organs and I needed emergency surgery. As a result i had to have my full right ovary and fallopian tube removed. Luckily the cyst was also benign. My mum got a lot of apologies from the drs.

Due to the same problem when I was 21, i had to have half of my left ovary removed too. My last visit to the GP was laughable. He didnt believe me when I explained my ovarian cyst history, and drew a diagram of my ovaries on a piece of paper to make sure I was correct in what I was saying!!! He then double checked my notes, as women "only have this problem in their 50s".

He simply would not believe what I was saying and thought I was mistaken of my surgeries until my medical notes confirmed it for him. I was lost for words.

[MissB83]

I had a very complex pregnancy with DS and consultant appointments/reduced movements/ lots of time in DAU from 20 weeks onwards. By 35 weeks he had dropped from 50th to 9th centile on scans. I had a consultant appt at exactly 37 weeks and expressed my serious concerns, requesting early induction or section ie ASAP. Consultant practically laughed at me: she said I was a neurotic FTM, no indications for early delivery being appropriate. She did a cursory scan, didn't read any of my pregnancy book including scans/inpatient notes (I was admitted for 3 days at 30 weeks because of reduced growth, reduced movement, high BP, protein in urine etc). She said your baby is just fine and booked me for sweep at 38+5 and induction just before 40 weeks.

Unfortunately she was wrong. My son was IUGR. Six days later he became entangled in his cord and stopped moving, probably because it cut off his oxygen supply. I went into hospital for quick checks and he was delivered an hour later by emergency section under general. I was told if id waited a few hours more he would have died. He was very poorly for a week or so as it was. He was just 5lbs 3oz at over 38 weeks.

I complained and the trust upheld my complaint, calling her incompetent.

[ghostyslovesheets]

www.theguardian.com/books/2019/sep/02/why-dont-doctors-trust-women-because-they-dont-know-much-about-us?CMP=share_btn_fb&fbclid=IwAR1scYDTiePWBFkciUVmNwYg1-tIpK_r9Nnl8Yynb-VpfkE_0y-sziPjNF0

from the author of this book www.amazon.co.uk/Pain-Prejudice-women-their-bodies/dp/0349424551/ref=sr_1_1?s=books&keywords=pain%20and%20prejudice&qid=1567618214&sr=8-1&tag=mumsnet&ascsubtag=mnforum-21

[Andpopwenttheweasle]

I was told for 18 years that I had heartburn and gastric issues by many GPS, Aand E doctors, out of hours etc
,wasn't until jaundice kicked in while pregnant that they found gallstones, lots and lots of gallstones! One was 3cm and was blocking my liver!
Was rushed to A and E at 4 months pregnant as the pain was making me delirious, explained my exact diagnosis and that I was to have surgery in a few weeks, the Aand E doctor said 'well you're pregnant, are you sure it's not heartburn?'
Had emergency surgery the next morning after a consultant saw me at 3am that night!!

[Wakeupalready]

It's not just UK specific either. I'm in Australia, and the same dismissal has happened to me, and other women.
This is long and ranty.

After having children 16 years again, I increasingly started to collect a weird collection of symptoms. Back would completely give way, I started getting severe migraines, always exhausted, foot problems. Nothing was connected and I got offered anti-depressants. Did nothing other than make me ill, but GP persisted with 8 different kinds for two years.No other solutions considered.
Went to new GP - (we'd moved) and after several appointments got told I was a "Drug seeking middle-aged woman with a low pain threshold who needed more exercise".Anti - depressants had caused me to put weight on.

Started developing hip problems, and sore hands. Hips got so unstable I felt my pelvic region would vibrate, and one hip would sublux and drop me on the ground. Couldn't touch my lower back area for the pain. New - GP - too fat , loose weight.

New GP - after a wobbly start, got a pile of scans done. Bilateral trochantric bursitis, one calcified and AS in my lower spine. Okay. Lots of continuing pain. Sent to orthopaedic doctor re hips almost dislocating constantly - got asked what I was doing there.
Go to a very experienced retiring physio who commented how hyper mobile I was.
I started researching hyper-mobility and ran myself through a series of test called the Beighton Scale once I came across Ehlers- Danlos. I was continually physically deteriorating with increasing pain levels despite loads of clinical Pilates. GP agreed I might be onto something .
Five years after starting with the last GP, I went to a rheumatologist and got confirmed as having hyper mobile Ehlers Danlos with gastric involvements, cervical spine issues, and a few other funky things that go with it.

I know more about the condition I have than most healthcare professionals I come across. I now start all pre appointment conversations for anything with " Have you treated anyone with Ehlers Danlos before?" If I don't ask, I get someone with no idea, and we're back to the neurotic woman scenarios.

The situation you raise is pretty internationally endemic, and beyond shit.

[ChristmasFluff]

When I was working in NHS mental health (90s/2000s) the psychiatrists screened for physical causes of mental illness - and doagnosed loads of people.

I specialised in chronic fatigue, chronic pain and health anxiety (physio). I found a case of advanced ovarian cancer referred via GP as suffering with 'IBS, anxiety and fatigue'. Lots of other less shocking misdiagnoses, but that one has stayed with me.

[Yellowcar18]

I'm hyper mobile/borderline eds. Growing up from age 9 I lived in daily pain and my knees used to give out and I'd fall down to the ground. Doctors wouldn't even acknowledge their ewas something wrong until I was 18.

Then at 20 as a first time single mother the midwives just basically thought I was a princess and being difficult. I kept saying no this isn't right I do the washing up and need a 2/3 hour nap. Had pregnancy Induced heart failure that was only picked up by chance on a scan of my heart to check if I have a certain defect. The care was appealing, I won't go into it. I suffer horrendous anxiety over mine and my daughters health.

[swingofthings]

We do Reflexella , with more chronic and autoimmune disease than ever before in history.
Mainly because of our own doing. The biggest cost to the nhs is diabetes, in billions. 90% of diabetes is type 2. The main cause of it is obesity and poor health habits.

How about starting to take responsibility, eat healthier, give up alcohol and start some level of exercise. The massive savings to the nhs would mean much more money to cure what we can't control.

[jamoncrumpet]

I recently went to the doctor to complain about chronic diarrhoea. It had got to the point where I was going up to ten times in the morning, and was affecting all areas of my life. Obviously I was very miserable and distressed by the diarrhoea, so the doctor told me to increase the dose of my antidepressants. They told me to come back in two weeks about the diarrhoea.

I went away and did a lot of research. Looked up the uppermost dose of Imodium a person can take in a day (it's more than it says on the packs you buy OTC) and took it for four days straight. It helped.

Two weeks later I tell GP what I've done. They could not be less interested. They ask me how I'm getting on with the antidepressants: I tell them that the antidepressants were not treating the problem, which is the diarrhoea I am having to constantly keep at bay. They tell me they will 'write to gastroenterology but they will probably say they don't need to see you'.

They end by saying that the antidepressants can take a few weeks to kick in.

I don't need more bloody antidepressants!

[Graphista]

And yes antidepressants being dished out without the full correct support for the mentally ill is also unacceptable.

I've been seriously mentally ill for 13 years, mainly with a condition that is widely recognised to likely have a genetic component (ocd) and I would agree I've had it all my life to some degree but was VERY good at hiding it...until I couldn't.

At NO point in those 13 years have I EVER been treated in the tri-factor way that the experts in the condition say is the only way to really tackle it.

And while "underfunded, short staffed" blah blah blah may be a factor it's ALSO poor management, lack of co-ordination not only across Nhs depts but even within the same dept!

Having staff in Nhs mental health services that not only think but say things like

"You're not trying hard enough"

"You like being ill it suits you to keep being ill"

"You've got to find the strength to attack this thing" (basically 'pull yourself together')

All things I've had said to me.

[Graphista]

Thanks to new posters glad to have you join the debate.

Itwaseverthus - you're absolutely right women's and men's bodies are COMPLETELY different and that fact MUST be acknowledged and accounted for. Not just with meds but ALL treatments.

Anti-depressants oh boy!

As someone on her 5th antidepressant and who has been reporting to those responsible since around 8/9 weeks in (because we are told it takes that long till it starts working) which is over a year at this point that IT'S NOT WORKING I am incredibly frustrated.

I should say that I have had good experiences too with meds that worked pretty much perfectly on MH side, but which I basically (in simple terms) became "allergic" to.

I've been BEGGING for a thorough but understanding meds review for almost 2 years.

Your experience of GP's must be very different to mine. My current one is ok but can still be a bit "my hands are tied" which is annoying.

Aside from her and the VERY few good ones I've had (less than 5 out of approx min 20 (Army dependant for over 30 years so moved around a lot) my experience is from the age of 14 when my health started going downhill of NOT being listened to, fobbed off, having physical even VISIBLE symptoms attributed to MH, being refused referrals to specialists (didn't surprise me to learn that's likely influenced by financial disincentives to do so). And even laughed at in reaction to my (later found to be correct) suggested DX.

[itwaseverthus]

Antidepressants are the sixties 'mother's little helpers' www.cambridge.org/core/journals/epidemiology-and-psychiatric-sciences/article/antidepressant-withdrawal-the-tide-is-finally-turning/8394C10FE317CA5A39B62B86793FC3ED#.XV6B94Nx3uE.twitter

I know it's contentious if you say so on here but just dishing out pills when people are in real emotional,psychological pain is not always the answer. The theory that depression is a chemical imbalance is long disproven, so what are these drugs targeting?

[itwaseverthus]

We do Reflexella , with more chronic and autoimmune disease than ever before in history.

[Reflexella]

And yet we live longer...

[itwaseverthus]

I know this is an old thread, but a very valid one so I will comment. Women's health has been a massively overlooked issue by feminism and its time to change that, it really is. I would have died and left a two year old dc if I'd listened to ill informed doctors who later did apologise (for which I am grateful but still would prefer had listened to me). The fact is, many drugs historically were tested on men, women are not men (hear that science deniers? ). I get queasy when I hear how many women are dished out Antidepressants on here, they are the least tested and evidenced drugs on the market yet seeminly women are given them at every turn rather than having the real issues tested. Not meaning to bad mouth GPs who I know are doing a sterling job in an otherwise shitty situation with the NHS but it's time to admit that something has to give. Enough of this NHS is god crap, lets be honest to effect change. Thanks for this thread Graphista.

[Graphista]

Sorry I've not been back for ages.

Again so sorry for your experiences daisy and as476

Sadly as can be seen from this and several other threads this is far from uncommon.

As you recognise yourself daisy still SO MUCH misunderstanding of mh issues and mentally ill patients even among medics.

[DaisyStarburst]

Also been told by mental health professionals I'm too intelligent and dress too well to need help. This also seems to be a common theme in other people I know.

[As476]

My midwife was concerned about my abdo muscles splitting apart whilst pregnant (can’t remember what it’s called now) and it took me a year to get physio from my GP. One told me that I should be doing sit ups (this could have caused a hernia) and the other one told me it was completely normal. In the end I refused to leave until he’d referred me, and ended up on a six month course of physiotherapy.

[DaisyStarburst]

Few years ago now, MH history, newborn DS. He was projectile vomiting constantly, nasty nappies, under birth weight and not gaining. Health visitor accused me of not feeding him! Tried explaining about the vomiting etc. He did it while she was there, she said if you don't feed him, that baby will be a cot death! Went to GP, terrified and sobbing who told me I had PND, go home and get some sleep! In such a state DH took us back to GP, same one, who diagnosed DS as lactose intolerant and prescribed special milk. He stopped vomiting, put on weight and I didn't have PND, oh, and he didn't die either!

[Graphista]

Infuriating that this is happening to so many.

Please persist in getting the help you need.

I'm not sure what else we could do.

[Welcometotherock]

And DD has awful periods which are very heavy and painful.
I've had 8 operations to clear ovarian cysts and endo.
I have mentioned this to the GP for obvious reasons but she isn't interested.

[Welcometotherock]

So many.

Went to the doctors and told them I could feel a lump in my stomach. Wasn't examined . Told it was IBS. Turned out to be two tumours on my ovaries 19 and 20cm in size which resulted in huge surgery while pregnant.

Rang an ambulance (first time ever) because I felt ridiculously poorly and couldn't even walk. Was treated like a complete idiot by the paramedic who thought I was wasting his time. Turned out I had a post op infection and surgery complications and ended up having emergency surgery immediately I got there.

Been going to the GP for five years with horrible symptoms, symptoms which are getting worse. Totally exhausted, awful joint pain, blurred vision, migraine, dizzy, some days literally dragging my leg behind me, weakness in my left side.

Still no further along in knowing why.

[MontStMichel]

greenchilly

Yes, DD used to get that - she could pinpoint the source of the stabbing pain, around the size of a coin during her periods, in the bottom right of her abdomen. Ultrasounds were fine! The pill only worked for about 6 months! Since she had a laparoscopy and the endo cleared, she's not had it!

[greenchilly123]

A couple of years ago I started to get stabbing pain in the bottom right of my stomach/just above my hips kind of area. Horrific during periods to the point where I can't function normally i.e. use the toilet, walk etc, and is accompanied by back and leg pain. Also occurs outside of my period too. I was only 19 when it started :(

Was referred for an ultrasound, they only looked at one ovary and decided everything was fine! Head gynae at my local hospital told me that it's very normal (!!) and just period pain. That was the last I ever heard from him.

Sadly my gp is less worried about working out what the issue is (I think endo) and more obsessed with trying to get me on the pill! I'm allergic to certain painkillers so obviously there's nothing at all they can do to help .