Women living with pain unnecessarily

[NeurotrashWarrior]

A fantastic article and it sounds like long over due research into how women are treated differently to men due to biology and medical establishment not researching it as much as male biology.

https://www.theguardian.com/books/2019/sep/02/why-dont-doctors-trust-women-because-they-dont-know-much-about-us?CMP=fbgu&utmmmedium=Social&utmsource=Facebook#Echobox=1567383798

(Warning: I think this is the Australian guardian so there's a couple of "gender diverse people" aka adult human females. Natch. just as with the pronoun art rohypnal it completely blind sided my reading of it for a bit trying to work out if I'd misunderstood the premise that this was about adult human females.)

Not at all surprised the author suffers from endo but it is far more than just gynae issues where medical misogyny is such a problem.

You may be interested and shocked to read my thread here op

https://www.mumsnet.com/Talk/amiibeingunreasonable/3402449-Aibu-to-ask-you-to-tell-me-your-experiences-of-being-dismissed-by-medics-as-a-sick-woman-I-promise-to-listen

Loads of people have been sharing that Fleabag clip where Kirsten Scott Thomas says a woman's life is full of pain until the menopause. It's supposed to be a positive "women are tough, menopause is brilliant" message, but I have to confess I hate it.

The idea that periods are inevitably very painful is a harmful one. Sure, even "normal" periods are a PITA. But severe pain is a sign something's wrong.

How many women have put off going to the doctor because "periods are supposed to be like this, I'm just a wuss who can't deal with normal pain" even when their pain is way beyond normal? How many doctors have dismissed women's severe pain because "it's just women's stuff, suck it up"?

I do remember your thread graphista; I know there's been a couple of other ones too.

Yentl syndrome I believe it's called.

Re periods I never had any period pain at all. Then I had my son, didn't have them for two years as I was bf and also very skinny. When they came back they were horrendous and often painful. I had lots of other issues and was in a chronic fatigue like state, asthma and hypermobilty syndrome eventually diagnosed on top of the already badly controlled hypothyroidism.

Second pregnancy was physically very healing. And I'm suddenly back to no pain, normal periods. Despite being a bit hypothyroid over the last couple of months (now adjusted.)

Can I find any info on whether you need less thyroxine when you have lactational amenorrhea? Can I buggery. So I'm doing the experiment effectively on myself.

I did learn on the bf support network grapevine that periods are more likely to return when feeding on demand if you have kept more weight on (though everyone is different.) so I did that (lots of cake) and they came back sooner.

This info should be taught to women.

Breastfeeding isn't even included in RSE education.

Yentl syndrome is really only about heart disease but as became obvious on my thread it's far from the only condition where women "presenting differently" ie not like men who's biology is fucking obviously different to us! Is a major issue.

That thread and several others I've read over the years have led to me learning that aside from gynae women have major problems getting things like thyroid disease, gall bladder disease and diabetes are woefully under/misdiagnosed in women.

We are continually dismissed regardless of sex of dr and worse there's additional pressure on MH services because women are diagnosed with "anxiety" instead of the actual PHYSICAL ailment they have!

Shocking!

And as I said on that thread and others it's not only meaning patients aren't being treated properly it's a waste of Nhs money/resources.

It HAS to be cheaper to DX and treat a patient CORRECTLY As early as possible rather than leave them needing to make multiple appointments, get treatments that merely deal with the symptoms and even potentially - as in my case - having to have surgeries that quite possibly could have been avoided.

The utterly ridiculous set up currently with financial incentives to gp surgeries to NOT refer to specialists, to NOT remove treatments that are causing problems (mirena coil, contraceptive implants), to give cheaper LESS effective meds is short sighted and false economy!

There’s currently a set of articles on the bbc news site they have done about this and related female health issues that has some interesting info in.

One of the things that stuck was the difference in time it takes to get diagnosed for men vs women. Often there’s years of difference - the one that struck for me was ehlers danlos syndrome - 4 yrs for men; 16 yrs for women!!! This struck a chord as a friend suffers from this and took a long time to get a diagnosis. There does seem to be more general awareness of the disease now so hopefully it is diagnosed more quickly for all. Plus it’s an inherited condition so as adults get a diagnosis their dc get diagnosed more quickly - boy or girl. But I suspect there will still be many women who slip through the net for a long time to come.

I don’t have the links for the bbc articles on my phone but they’re easy to find in the articles section and they’re well worth a read.

this enraging article seems relevant. A woman broke her leg while running a marathon. Despite her repeatedly returning to the hospital complaining of the pain, doctors did not even send her for an x-ray. She died.

www.theguardian.com/uk-news/2019/sep/03/woman-died-broken-leg-pulled-hamstring-sarah-jayne-roche-cardiff-inquest

www.mumsnet.com/Talk/womens_rights/3683152-Boots-magazine-article-THE-GENDER-HEALTH-GAP

I remember that thread Graphista. Shocking, all of it.

My periods took me off my feet for 2-3 days every month , until starting a family. I had the strongest painkillers you could get, to the point of being totally out of it. I bled profusely, and now think I was probably anaemic too, which can cause depression, and I was depressed. Mind you who wouldn't be, having that much pain every month. I know a young girl now who suffers the same, shes been getting knocked back by her doctor for years.

Either they dont know what to do, or have no real acceptance of the impact on a womans life, like its not taken seriously.

I know two women who haven't been dx with ehlers danlos until they are suffering major events, many years after first experiencing symptoms.

I personally believe many just don't take women seriously.

One of my DC has extreme pain in their hip, when standing for any length of time, years on still no dx, or maybe thats just normal?

Thanks for posting OP

I've hardly had any major health problems but still my gallbladder pain was dismissed by the terrible male GP. A group of non-medical women told me that it was likely gallstones. Because they learnt from their own experiences.

Sorry, don't want to just repeat Graphista's thread!

I have a friend who suffers with vaginismus - can't get a gp to take her seriously or refer her to a suitable pathway 🤬

I wasn't diagnosed with Ehlers danlos until my 30s by which time nothing could be done to halt the deterioation.

It actually took the specialist hours to convince me there was something organically wrong as I'd spent months and months in therapy to find out why my mind was inventing the symptoms as I'd spent decades being told I was physically fit and healthy and just didn't want a job (despite having the highest score a person could have on the EDS scale at the time - I score the maximum for every joint - specialist couldn't believe it and I've had scars suddenly come open).

Even having been diagnosed I still get Drs questioning it, even if I sublux my joints (my fingers bend naturally at every joint both ways without being touched) they'll say I'm just fat and lazy - all lazy people can sublux joints apparently and, again, asked if I'd think about physio (made my EDS much worse) or losing weight and mostly common maybe getting a GCSE and looking for work.

I've had one dr dislocate my shoulder trying to get blood as I screamed as there was no way it hurt I was just being dramatic and my arm would naturally stop twisting - it didn't. Paramedic accused me of not trying hard enough to get off the floor after collapsing when they grabbed my arm to pull me up - they literally pulled my elbow and shoulder joints out.

That's just the EDS, which I've heard a billion times NEVER CAUSES ANY PAIN.

Never mind the conditions which are caused by the screwed collagen.

Don't get me started on the period problems I have or the fact I have type 2 diabetes and the difference between my treatment and the man in the same bay as me in hospital. I was constantly bullied about my disgusting habits, whereas he was sat there eating chocolate pudding and custard - his blood glucose was mid 20s, mine was 8. I was disgusting and going to lose my limbs and die because I wasn't trying hard enough. Him? Nothing was said.

Bloody hell Becca! My dd has eds and I thought it was bad enough she wasn't DX until nearly 12 despite her appearance even at birth being classic of eds and her having SO MANY symptoms and incidents of dislocation etc. Plus three hospital admittances due to skin breakdown/tearing leading to unusual infections and unusually bad reactions to "normal" infections that people without eds can basically shrug off. At one point almost losing the sight in one eye.

She's in constant pain, that's pretty much expected with eds. She's constantly knackered too because her body is constantly fighting NOT to succumb to injury/infection.

John Oliver on last Week Tonight covered Medical Bias a few weeks ago, I can't link it as it only plays in the US on YouTube (I use a VPN) and Dr Mike (YouTube medical doctor) actually read all the articles cited and responded and confirmed there is bias but went into some of the reasons why.

How many doctors have dismissed women's severe pain because "it's just women's stuff, suck it up"?

That has actually been said to me. I was 15 and had agonising period pain, my Mum came with me (she had always had "bad periods") the male doctor basically told me all women have periods, some are more painful than others but there was nothing they could do I would just have to learn to live with them. He suggested I was thinking the pain was worse than what it was because being so young I had not had time to experience much pain.

Sadly my Mum then just decided I had a low pain threshold but even then I returned to the GP several times, always male doctors and although sympathetic I was never referred onto a gynae. I was finally diagnosed by a female doctor 10 year later as having endometriosis and referred to a gynae.

This thread makes me so sad.

I've experienced similar things in other ways and it left me with a type of trauma around one of my conditions that I ended up having quite intensive therapy about.

Mainly being convinced that I wasn't 'just' a hypochondriac and it was sensible to try to be on top of my illnesses and go to the Gp.

Similar early life experience of not being believed about reoccurring pain that was mesonteric adenitis. I was also written off as having a low pain threashold.

How many women have put off going to the doctor because "periods are supposed to be like this, I'm just a wuss who can't deal with normal pain" even when their pain is way beyond normal? How many doctors have dismissed women's severe pain because "it's just women's stuff, suck it up"?
Emma Barnett was on tv this morning talking about this very thing. She’s just written a book, ‘Period, About Bloody Time’. She apparently went through so much pain every month and it didn’t even occur to her it wasn’t just ‘normal’ that it took a friend to see her at her worst one day and say, no Emma, this is not normal that you can’t sit up straight. I had years of peri symptoms that my (my age, if not older, female) Dr. dismissed with a kind of ‘well, it’s the menopause, what do you expect?’ attitude, did nothing, gave no advice, made me feel (despite being an educated, confident, professional woman) really stupid and pathetic. Last year, after six months of no periods followed by four weeks of the kind of bleeding that meant I couldn’t even leave the house, I finally went back to the Dr. I fully expected to get brushed off again, and indeed that was why I waited so long to go , but thank goodness I was seen by a young, male, Dr. His immediate reaction was no it’s not bloody normal (pun intended). After immediate full bloods and being sent for a TV scan, I was diagnosed with not only ovarian cysts (which will now be monitored) but also pernicious anaemia for which I will have life long medication. So I’ve probably had about four years of unnecessary pain and discomfort, anguish and embarrassment. I have had to be a vociferous advocate for both my DH and DDs very serious health issues, and I would describe us as NHS ‘heavy users’, I know the systems, they don’t frighten me, I appreciate the NHS but I know well now where it’s failings sometimes are, I know the questions to ask and what to push for with regard to my family and yet when it came to me, because as a menopausal woman I’d been conditioned by years of the prevailing ‘put up and shut up’ rhetoric regarding women’s gynaecological health, I was silenced and started to think that expecting anything to be done about it would make me a trouble maker when there were so many other, far more deserving, people that should come first. When I read posts on here, from so many women, months in to unmanageable symptoms, like uncontrollable bleeding etc, asking should I go to the GP, or am I overreacting? It really, really turns my piss green on their behalf (I should probably see someone for that ). I was only reading Graphista’s thread this morning, and getting more and more worked up about it.

"Either they dont know what to do, or have no real acceptance of the impact on a womans life, like its not taken seriously"

They bloody well would if the woman was working for them in their surgery as their receptionist.

Ditto overactive bladder. All normal...............................but you know if someone with this condition was working for them in their surgery they would be humming a different tune.

For me it was devasting to go through months of therapy for a therapist to tell me I obviously had an organic issue as well as mental health issues (inc possible PTSD from how I'd been treated by medical professionals). I really got angry with the therapist. It took me years to get to the point of accepting and getting therapy for "somatoform type disorder" which I'd been diagnosed with and for her to say it wasn't that was too much for me.

A week later I was admitted for specialist tests in London (I'd been waiting ages for that admission). Basically every test they could do they did. I was diagnosed there with EDS and other stuff and again ranted about them being wrong I was then sent to see a specialist in somatoform disorders who told me they'd all tricked me and I was wasting everyone's time and tests were redone to "prove I'd lied". When it came to leaving I apologised to everyone for wasting their time and the specialist came up to me and said I'd asked for the test to be done and that was how they did it - pushed every emotional button I had to see how my body reacted to extreme distress and upset and to see if it was any different, turned out it wasn't.

More rage - i know my behaviour was horrendous. Eventually I apologised to the therapist and the specialists.

I turned myself inside out to go through that, extremely expensive therapy for a condition I didn't even have and, destroyed my mental health in the process not to mention trust in Drs.

An arm op never healed (certainly due to the EDS) was recorded as me not wanting to be well at 9 and attention seeking.

My medical notes are according to one dr who saw me an utter mess with all the accusations in there.

they bloody well would if the woman was working with them

Actually no.

During one admission to hospital I was working at the dr who came to consult with me broke down in tears. She'd been diagnosed with EDS after having her child and was being bullied by other Drs for being weak and making it up, she'd all the problems associated with it including period issues. She'd never met anyone else with it and begged me to help her. I did. I wrote a really shitty letter to her consultant, stating it was not to go on her file but the people she was working with needed to be given short shrift as no one should be breaking down begging patients for help because they're being bullied by Drs who should know better (I'd been the expert patient for that departments training in EDS there was no excuse at all for it).

Two days later the consultant came to see me and said he had no idea she was being bullied by staff, not only Drs but nurses as well. She's still a dr, part time. She sent me a lovely letter thanking me for helping her and apologising.

She was lucky I worked there and was mentally able to cope with her breaking down at that time. I dread to imagine what would have happened otherwise.

Can you imagine being so distressed you'd beg a patient to help you?

I'm aware my last two posts make me sound like a total nightmare of a patient, all I can say is with the diagnosis stuff it had taken so much to "Accept" I wasn't ill I couldn't cope with the fact I was.

The dr, that I'd do for anyone. The consultant at least was really decent about it and knew nothing and got it sorted (his rep was as a nasty pice of work so yeah they definitely got a yelling at!)

Here's mine
Always ill. Felt like a hypochondriac, constantly at the doctors. I have had maybe over 70 courses of antibiotics, chest infections, tonsillitis etc etc
Sent for bloods. All "normal"
Chest infection went to pneumonia, OOH said my bloods were abnormal but returned to normal
This is over a period of EIGHT years. At this point I'm skating close to losing my job for sickness
I go back to the GP one morning and see a lovely female locum GP, as waking up with night sweats, she sends me for more bloods

Out for a meal that night and lovely GP rings me. She opened every blood test I ever had. All vaguely abnormal, some alarmingly abnormal. She asks if I can go to haematology at the hospital. I ask when, she says "now, the consultant is waiting"
They diagnose me as severely neutropenic. Yeah, that thing that means you are prone to infection hence all the illness!
The haematologist over the next few months does 75 blood tests and even sends my bloods to one lab that is the only one in the UK to test for a specific antibody. It comes back positive. I cried because I knew something was wrong and nobody listened, I could hug that female GP

I kill off my own neutrophils, so I'm at risk of neutropenic sepsis. The chest infections, the tonsillitis, the pneumonia all could have killed me. I now inject GCSF weekly to raise my neutrophils which has awful side effects. But I'm well. When I go back to the GP (not the lovely one) they comment I have been well and not been in for ages. Yes, funny that(!)

I won't go into the sciatica I had for years that turned out to be a herniated disc that doubled in size and led to cauda equina. I was listened to that time, they noticed I was grey with pain and I actually said "I have cauda equina and I need another MRI". They did the (3rd) MRI and I was operated on that day, I have some nerve damage but caught so soon that I wasn't paralysed

These stories are shocking. Can you imagine if men were in pain from periods every month? So much more research would be done and better medication developed. Same with childbirth and the menopause. No it’s just swept under the carpet you aren’t supposed to talk about it definitely not in front of me “monthlies” “time of the month” “the change” well screw that! My 15 yo DD announced tonight in front of her Dad and brother that she had started her PERIOD today and was feeling ropey. I was proud, why shouldn’t she, we shouldn’t feel ashamed or hide it away!

I saw this on Twitter today. Not sure I should link to it or name the poster (whose profile says she lives in England).

One year since I first went to my GP complaining of chest and back pain. Two weeks since it was finally diagnosed as stage four breast cancer. One week since I was admitted to hospital unable to breathe. This morning I talked about it to a breast oncologist for the first time.

There's just far too many reports of women's pain not being taken seriously. It's baffling that the medical profession don't seem to be aware of this. Actually, it's also insulting.

to you all.

It's really shocking!

Anyone who reads my thread will see that very often it's seeing a locum that marks a turning point.

I very strongly feel this is because GP surgeries are to all intents and purposes private companies with the gp's being shareholders and they don't want their profits reduced because they've had to pay for a referral to a specialist or had to refund the financial "incentive" (bribe as far as I'm concerned) for a mirena because the patient has (finally! In many cases) had it removed because it was making them sick!

Locums have no skin in the game and as a result do their job properly.

Personally I think gp's should never have been allowed to stay out of the Nhs proper in the first place.

And yes I'm fully aware of appalling hospital Drs/consultants too inc the GYNAECOLOGIST I saw after moving following my endo DX - who claimed to have never heard of endo!!!