Womens’ experiences of their bodies ignored

What is so frustrating is that with "woman" being a dirty word, I fear nothing will change. Women will continue to be medically disadvantaged & suffer accordingly.

We need change

given the common experience of women having their symptoms or reports of 'odd behaviour' dismissed as "just women'.

Strangely enough DH and I know of three people who have had neurological problems we suspect are associated with covid. We've been worried about affects on the brain for some time.

One was hospitalised in December. We've had an odd pattern of pneumonia locally (there is a connection with china with the group we know of who were unusually ill in December). She had brain complications. In her case don't know whether it was definitely covid-19. In her 30s.

One of DHs male colleagues is struggling to get back to the level of cognitive ability at work before he had covid-19. He had a positive test. In his 40s.

The wife of one of DHs friends is having very serious neurological problems following being hospitalised with a confirmed case of covid. She was extremely ill. She's only just 50. Her teenage daughter is having to help care for her at present and they don't know if the symptoms are permanent.

But yes the more serious confirmed case is a woman.

I have a theory that women doctors tend to think when we go into their surgeries saying we are having bad periods probably project their own issues on to us (ie "well, I sometimes have bad periods as well" , meaning they feel a bit achy bloated or grumpy. Me, I felt like a knife was twisting my insides, nauseous, faint, dizzy... not to mention the endocrine/testosterone issues with PCOS ("well, I crave sugar and get tired mid afternoon too, I get spots and a moustache too..." not thinking that the average hormonal woman's experience is nothing like the hell on earth that is PCOS or endometriosis.

That's just my theory, though, Could be wrong.

@bonzo77 @bluefoxmug

Also sodium valoprate greatly exacerbating or triggering PCOS in women who are genetically prone to it. This was my experience.

And the movement disorder I struggle with still after many years caused by another psychiatric drug. I am not anti psychiatry, I think drugs have their place in mental health but when I have tried to have my experiences heard and validated by that profession I end up shut down. And get fobbed off with a label of Psychogenic Dystonia or FND. Or told my PCOS was caused by me just being fat and "try slimming world, dear."

Sadly I have generally found female GPs and other healthcare professionals less understanding than male ones. GPS especially.
I have a long history of PMDD, postnatal illness and hormone related mood swings. Female HCPs have been dismissive, but males have at least been sympathetic and tried to help.

Such a scandal and so ironic at a time when the use of the word woman has become forbidden. How on earth we can make any progress until women are allowed to speak freely I cannot imagine?

One of my first reactions on seeing this Guardian piece about the (rare) neurological sequelae of C19 was to wonder which healthcare system this was spotted in - given the common experience of women having their symptoms or reports of 'odd behaviour' dismissed as "just women'. (NB, it is the UK where this was spotted. I have to wonder just how many people, but women in particular, are not being diagnosed.)

One coronavirus patient described in the paper, a 55-year-old woman with no history of psychiatric illness, began to behave oddly the day after she was discharged from hospital.

She repeatedly put her coat on and took it off again and began to hallucinate, reporting that she saw monkeys and lions in her house. She was readmitted to hospital and gradually improved on antipsychotic medication.

Another woman, aged 47, was admitted to hospital with a headache and numbness in her right hand a week after a cough and fever came on. She later became drowsy and unresponsive and required an emergency operation to remove part of her skull to relieve pressure on her swollen brain.

“We want clinicians around the world to be alert to these complications of coronavirus,” Zandi said. He urged physicians, GPs and healthcare workers with patients with cognitive symptoms, memory problems, fatigue, numbness, or weakness, to discuss the case with neurologists.

“The message is not to put that all down to the recovery, and the psychological aspects of recovery,” he said. “The brain does appear to be involved in this illness.”

www.theguardian.com/world/2020/jul/08/warning-of-serious-brain-disorders-in-people-with-mild-covid-symptoms

It’s not surprising but there’s a secondary element here to the sexism. I’ve found that the complete lack of interest shown by medical professionals in the UK is partly driven by the bizarre culture of undeserving patients promoted within the NHS and British society more widely. My experiences abroad and in the private sector were very very different.

this is huge. It's not only "women's" problems for which we are fobbed off, but also health issues which affect both sexes but present in non-text book fashion in women. Cardiac symptoms and autism being two examples.

I just remember the awful gaslight-y behaviour following the birth of my first baby...

Re: talking about it, I’m also always reminded of that storyline on Call the midwife, with the woman who just accepted urine incontinence as the universal lot of a middle-aged woman who’d given birth. I don’t think that idea has gone away. Some of that is about being taught to shut up and be grateful, some of it is about a culture where we wouldn’t dare discuss pee. And I don’t think we’ve moved far (enough) on either of those since the 1950s.

It’s a bit of a ‘don’t get ideas above your station’ attitude. Probably rooted in defensiveness and unhealed injustices.

At the same time I think it’s important that we don’t hold women who have reached this perspective culpable for the sexist failings of the medical profession...

Separately, I think part of the issue too is the coyness surrounding most medical ‘women’s issues’. We really, really need to find ways of talking about these things openly without treating the exposure as a loss of dignity. I definitely could play my part in that more fully - I don’t mention my birth injury enough, especially not to people who haven’t also given birth. I think sometimes we keep these conversations too private and then we have these headlines where those of us ‘in the know’ are completely unsurprised yet other people had no idea there was an issue. I feel that I don’t want to scare people, especially women who may yet give birth, but equally - my problem wasn’t my (lovely, actually) birth, it was that the colorectal doctors didn’t sufficiently recognise that my injury stemmed from a fast birth and extensive suturing, rather than from constipation, even though I kept fucking telling them. And maybe if more people like me talked more about that, it wouldn’t have seemed such an outlandish idea.

• I think ‘difficult birth’ doesn’t even necessarily mean ‘something went wrong’ or instruments or EMCS or lasting damage or whatever. I think it’s more qualitative than that, and is probably to do with how dis/empowered the birthing woman was, how they were supported through/after their experience.

'Innovation without testing and long term monitoring is dangerous'

Spot on. Also known as post-dissemination field testing without report gathering. This should have been halted long ago but the authorisation of devices is a mess.

www.ema.europa.eu/en/news/workshop-safe-use-medicines-during-pregnancy-breastfeeding

interesting workshop wrt safe use of medicines during pregnancy and breastfeeding announced today.

Hmm, that post needed more punctuation. Sorry for the poor communication...

There is a long thread currently active where a mother is concerned about her adult daughter's treatment on the postnatal ward.

The number of, presumably female, posters coming along to say that it sounds like she's making a fuss about nothing and expecting better treatment = being entitled, being a nightmare patient, wanting a private hospital experience on the NHS ward is incredible.

How can we ever overcome the sexism within medicine when a significant proportion of other women believe that women in hospital, particularly in maternity care' deserve to be patronised, scolded and generally mistreated.

I felt really depressed reading it.

Thing is this is nothing new and it shouldn't have been restricted to just those three things.
I started my periods aged 10 and was told over and over again my pain was normal...ie I was a wimp, I used to faint with the pain. Aged 18 after an emergency appendectomy I was dx with severe endometriosis which had stuck my ovaries down, covered my bowels and had a grapefruit sized cyst removed. When I came round the consultant told me I was a silly girl for not seeking help sooner. So began my introduction to the structural and systematic misogny of the NHS. The minimisation of our pain is not just restricted to 'womens issues' either its how they treat us across the board.

Just watched Baronness Cumberlege' speech on BBC news channel. Wow it is just so powerful, total condemnation of all concerned.
Particularly scathing about lack of follow up and monitoring.

'Innovation without testing and long term monitoring is dangerous'
Puberty blockers and GIDs are dead in the water.

Yes exactly.

Women. Unclean word now. Must never be used. Especially on women’s hour. Maybe they should call it something else 🤦‍♀️🤷‍♀️🤷‍♀️

I was infuriated by the report on Women's Hour - the interviewer repeatedly said "the people affected" rather than "the women affected". I don't think she said "women" once.

It is WOMEN this is affecting and it is called WOMEN'S HOUR fgs.

That's a great question. Despite covering ethics they didn't use to teach about scandals in the 1980s, but then again they didn't teach about communication skills back then either! I will ask my still practicing GP friend who teaches medical students if scandals are covered in any meaningful way.

Daily examples pop up all over MN all the time.

I'm infuriated listening to Radio 4. The "expert" cant even mention WHICH sex is disadvantaged. Its a problem with "patient care" and elitism. No its fucking not. MEN don't get vaginal meshes! This is supposed to be WOMANS HOUR. I fucking hate gender warriors making woman and sexism unsayable. Its like someone talking about the Stephen Lawrence Enquiry and then saying "the police are just big meanies!" If we cant name the problem qe can't fix the problem

I’ve listened to the women’s hour segments on this scandal and what I kept thinking was - this is institutionalised sexism, pure and simple, and why aren’t we calling it out as such. Women being ignored and dismissed because they are women. If it happened to any other class of people there would be uproar.

What I want to know is do medical schools teach about these scandals? Are they made aware of how embedded this kind of attitude towards women is. Newly trained doctors should be challenged about their own assumptions and the dangers they pose.