Women and medicine: unconscious bias

I should say that for all I know, I have been lazily misdiagnosed years ago. I could have spinal or pelvic problems requiring surgery. Or a tumor (probably not, I'd likely be dead by now). 13 years. It is much improved over the last couple of years, but this thread has made me so angry I may well lodge a formal complaint while it's on my mind...

I have pelvic girdle pain for nearly 7 years now but it's almost impossible to get proper support for treatment

Oh god, yes - I hear you! I have suffered terribly with PGP starting when I was 19w pregnant with DS1. So just over 13 years ago. I am still suffering pain every single day and night of my life due to PGP. I must have had scores of GP appointments during that time. I have been told over and over again that "it usually resolves after birth". Indeed, but 'usually' inherently that means that sometimes it doesn't resolve! I just get surprised expressions, shrugs and as time progressed sceptical faces. Along with the either lightly hinted at or just outright blunt accusal of being a drug seeker. The entirely of my treatment has been a stretchy belt, referral to 2 courses of physio (that made it 100x worse) and mild painkillers (wouldn't want to actually treat my pain now, would we, steady on...)

My ex developed lower back pain during all of this - he was referred for a scan by his GP after the first apointment. Scanned within 2 weeks and surgery offered within 6 weeks. Fixed. And he got decent painkillers!

I was far more incapacitated and in more pain than he was at the time. I could barely walk and would wake every 30 mins all night long due to the pain. But a\ll I got was a sympathetic shrug and 'it's one of those things, it's very common in women...' Sadly, this also meant that my ex then decided that clearly I was massively exaggerating how bad my PGP really was. I was obviously a lazy cow who was pretending to be in pain for sympathy - if I actually had a problem I'd have been referred and operated on ASAP just as he was!

"Doctors in training are brought into a culture that falsely believes women exaggerate and men try to put on a brave face - add a racial and class based lens on that and it gets much worse. "

Add a trans or intersex history to that list and getting treatment can become almost impossible.

I was wondering about another aspect of all this - sort of thinking out loud here...
It seems like women aren't given proper information about how their body works. For example, going on the pill "to regulate periods". But the pill doesn't do that, it stops you having periods. You instead have a withdrawal bleed - but what is that? (If anyone knows please enlighten me!) If your body is not releasing an egg and preparing for pregnancy, why is there womb lining coming out? And if your periods are irregular, why is artifically inducing a non-fertile bleed every month a solution?

That might not be the best example but there seem to be a lot of things that are over-simplified to the point of being incorrect. As if medics are allowed to know what's going on with our bodies but have to fob us off with vague explanations, and a sort of statement of "this is what is happening" when it's not, really. (The parallel of this in psychiatry is talk of "chemical imbalances in the brain" when someone is clearly reacting to life circumstances/experiences, if that's a clearer example!)

Does that make sense? I can't seem to articulate what I mean very well!

some really awful stories here

I agree with PP saying that if you learn some medical terms you are taken a lot more seriously. I’ve had a complete balls up through the NHS and have actually gone private because I can’t bear being in such a hideous amount of pain on a daily basis (some kind of nerve issue in my pelvis, still not got a diagnosis). Even then I could tell the doctor was moving towards fobbing me off, then I started talking about complex anatomy and different sorts of tests and suddenly he started listening and giving me some respect. It’s awful that it’s so ingrained in the culture of medicine, the senior NHS consultant who made such a mess of the situation is female. She just didn’t want to believe how much pain I am in and didn’t bother treating as urgent. She was negligent to the point where I have a case against her.

It doesn’t even get better in private medicine. I have a GP service through work that is usually very good. Last year I had had a battery of tests done by a dermatologist who suspected I had an autoimmune condition (my ANA test had come back 1:2560 - a very clear indicator of autoimmune dysfunction).

Because the doctor was a “female health specialist” she spent most of my 15 minutes telling me how to take the contraceptive pill correctly (at 35!) and how I was getting older so this was the last time she’d prescribe it. My error was starting my appt by saying “I’m worried about this test result plus my face rash and tiredness, and oh can you refill my pill scrip thanks”.

I actually went back to the NHS who referred me to my choice of rheumatologist who was brilliant.

My sister has also had a similar experience where her iron levels kept tanking despite six weekly (really painful) iron injections. She also has anxiety so they focussed on her “stress” causing her severe anaemia. After about five years they finally relented and did a gastro/endoscopy. She has Chrohn’s disease and will be on immunosuppressive drugs for the rest of her life.

Christ there are some horrific experiences on here im sorry to see.

Why cant they develop the blood test for HPV fully so that it can be used by the NHS as an alternative to smear tests. They say its discomfort. Not for me i find it EXTREMELY painful . Mine was due last November and i skipped it. Im not sexually active though so hopefully im low risk Last time the pain had me in tears. I just cant do it.

There have been a few threads about this.

I’ve experienced this too.

Can I appeal to everybody to start calling this (and other things like it e.g. recent story re police custody) what it is; sex discrimination.

If we don’t call things like this sex discrimination then they don’t seem like they are all part of the same problem and they just seem like an institution ‘not getting things right’ but what they are is examples of sex discrimination.

Its interesting in a horrible way that the concentration of cases where women’s concerns are dismissed and misunderstood relate to reproductive health.

LostLesbian that sounds excruciating. How can they not have realised the pain they must have caused you.

Your story reminded me of the horrific practice that was widespread in Ireland in the past during difficult labours.
As it was deemed best for women to have as many children as possible, doctors didn’t like to do Caesarean sections as a woman is not meant to have more than two or three. So, often without the consent of the woman and with no pain relief, they would perform a symphysiotomy, which involved severing muscles and ligaments around the pelvis as well as sometimes cutting part of the bone.
The women then went on to suffer debilitating associated conditions for the rest of their lives.

www.theguardian.com/lifeandstyle/2014/dec/12/symphysiotomy-irelands-brutal-alternative-to-caesareans

RelapsedChocoholic there has been some (very long overdue) news re an ovarian cancer drug. Not quite a wonder drug, but Niraparib has been approved this week. Woman's hour had a segment on Friday I think.

news.sky.com/story/niraparib-drug-daily-pill-available-on-nhs-for-first-time-is-milestone-in-ovarian-cancer-treatment-11391392

This was my experience with getting a colposcopy and cervical biopsy, too. The practitioner said there would be "no pain" and just "minor discomfort." It was extremely painful getting 2 holes punched through my cervix. No pain relief whatsoever. This was in the US, btw.

May be a bit off topic, sorry, I’m finding myself getting the rage (slightly!) lately when I see news stories about medicinal break through for men’s problems

Prostate cancer wonder drug today -I obviously don’t want men to die of prostate cancer but where is the ovarian cancer wonder drug?

Treatment for male pattern baldness a couple of weeks ago - really? Where is the treatment for pcos? (I appreciate some women may benefit from this drug, but majority of beneficiaries will be men)

Is anyone even bothering to look for cures to women’s diseases?

Rant over! Thanks

My language is good enough to get a professional degree in socialwork. But my medicinal vocab is lacking, not helped by them not using the latin terms. Im simply not exposed to it often enough to learn it. But yes Im convinced they think im a bit thick. Strangely enough I can say the english latin based term to my polish friend and she understands, and repeats back the polish latin term and we can both hear that its the same.

That's intriguing, redexpat. Are you significantly less proficient in the local language, so they view you as a bit thick? I'd have thought speaking the local language would help!

I am diagnosed with mental health issues so have very much experienced this - also have endometriosis. Big problem in having my pain believed, especially as when in the grips of it I can't move to get to a doctor for them to actually see me in pain (white, shaking to the core, throwing up, delirious). So, once a month of excruciating, life-disrupting pain (at the first twinge, I have to make sure everything essential is done within the next hour as I'll be completely incapacitated after that). Taking the pill doesn't help, and makes me feel exhausted and weepy, but I sometimes use it to delay period if something important is happening.

This is all worse for working-class women as well, as they are more likely to be in the sort of jobs where you can't have flexitime and things.

As an aside, if all these women are presenting with severe physical symptoms that are supposedly a manifestation of stress - what's the solution, eh? Get their partners to take over more household/care duties so they can put their feet up? Make the general environment less stressful for women but cutting back on the harassment and murders?

I really like that the article also mentions race. Im not an ethnic minority but I am a forriner in my resident country. Ive given up trying to talk to drs in the local language because I get treated so poorly by them. When I switch to english I get taken much more seriously.

I've been reading Inferior by Angela Saini and it's eye opening, for example she talks about how, in a study into sex biases in animal research, "Of the ten scientific fields they investigated, eight showed a male bias. In pharmacology, the study of medical drugs, the articles reporting only on males outnumbered those reporting only on females by five to one. In physiology, which explores how our bodies work, it was almost four to one."

And of course the lack of research means that the whole system is flawed from the ground up when it comes to treating women. We've been a footnote at best for so long.

Thanks for all the articles and sharing your stories. to all.

A family friend was found to have had six heart attacks over about 6 months before she was properly listened to and assessed. I have pelvic girdle pain for nearly 7 years now but it's almost impossible to get proper support for treatment and no acknowledgement at all that it's as a result of two emergency c-sections. Like so many pregnancy and birth injuries, it's put up and shut up because you're not dead and your baby came out fine.

Sadly not shocking.

Depression caused by hormonal contraceptives has dominated my life, to the extent I thought I was "a depressed person." I'm
Not.

No Medical person has ever been interested ever. Not one of them even asked me a question about it yet the link is well known.

It's grim.

My DM was put down as having fibromyalgia with no investigations done at all, despite the fact she rarely complains of anything, didn't have any of the relevant symptoms.

In fact she had giant cell arteritis, polymyalgia rheumatica and C1-2 instability. Luckily her daughter is a doctor.

Said daughter was diagnosed as a child with stress and psychosomatic fainting. Oh and told her periods would get better when she had a baby As an adult it's more than likely I have POTS and high functioning autism but never going to get a confirmed diagnosis now. Nor a baby - I never coped with the periods and have been on the pill my whole adult life. It would have been nice to know what the issue was but I am a fat, v hairy woman so PCOS is more than likely.

What I have had confirmed is that I am not 'clumsy' - I'm hypermobile. Thank-you, say my ankles which have been sprained over and over.

I see it all the time and go out of my way to really listen.

When DH complained of stomach pain and was vomiting I was really reluctant to take him to A & E because I assumed they'd laugh us out of there. He was brought in straight away, treated and scanned and taken very seriously. I realised how unused I was to that situation - even though I'd never openly been dismissed I wasn't at all familiar with a situation in which I was believed straight away, without having to explain and justify everything first. Whatever DH said, they just accepted it and were very sympathetic and concerned. I had never experienced that. While in labour, particularly I was made to feel like I was an inconvenience, overreacting, an annoyance.

To an extent I feel like misogyny runs so deep in our society that a woman seeking help and treatment is seen almost as cheeky - as though we're silly idiots who don't know our place. Men are important and must be looked after, women are just expecting too much.

I have definitely found though, that if I use one medical word when speaking to a doctor, no matter how simple it is, I suddenly move from the 'woman' category into the 'possible peer' category and the level of listening and respect goes up a massive amount. It's literally a change from one sentence to the next. I would recommend any woman to get some solid basic medical knowledge (just learn the full names of the standard blood tests, even) and use it in context. Doctors hate Dr Google type knowledge but they totally respond to you saying ileum instead of small intestine.

I was fobbed off for years by my gp that gynae discomfort was my age and weight , I was only in my mid thirties then and about 10 or 11 stone.
I paid to see a consultant in the end , it was LS

@carefullydrawnmap that is so shocking, you must have felt furious. What a prize twat! And @Johnnymcrath, awful story as well. So sorry for you all. I have a few stories too of being minimised and patronized, mainly all related to pregnancy and childbirth but one that stands out is when I suffered a miscarriage at 12 weeks. I went straight to GP at the onset of bleeding and was sent home with an appointment booked for 4 days later 'to see what happens between now and then. What happened was I bled huge amounts in my toilet / bathroom until I passed out, suffering great pain for hours (on a par with labour), got taken off in an ambulance unconscious and had the remains removed in A and E with emergencies rushing in and out all around me. Then spent 48 hours on the ward (where I received excellent care). I felt very much left to cope alone by that GP. She gave me no information or support or idea of what might happen during a miscarriage. I was entirely uninformed (hadn't discovered mumsnet then!)and she didnt even examine me, she ushered me out within a minute or two. There was no suggestion of booking in a D&V (is that the right term?!) Or even a scan. I can't imagine why a serious medical event would be so downplayed. Oh wait...... because it's childbirth so it's just natural.......