Endometriosis and gaslighting in the NHS

[RethinkingLife]

Women with endometriosis who have endured years of excruciating pain are being “fobbed off” by doctors and told their symptoms are “all in their head”, leading them to give up seeking NHS treatment, new research has found.
A study carried out by academics at Manchester Metropolitan University found women with the disease felt “gaslit” by doctors due to their lack of understanding of the condition.

The paper, due to be published in the Journal of Health Communication later this month, also found that treatment was subject to a postcode lottery. Patients in rural areas reported travelling for hours to access a specialist with full training in the complex gynaecological condition.

https://www.theguardian.com/society/2024/jan/21/gaslit-by-doctors-uk-women-with-endometriosis-told-it-is-all-in-their-head

None of us are surprised by this. When will this default attitude to women stop? Just what will it take to shift the culutre

It seems it can.

https://www.ox.ac.uk/news/2023-03-14-global-study-shows-experience-endometriosis-rooted-genetics

Yes it’s very common for endo to run in families. I think it does more often than not actually?

I’m sure it does. My mum had it, I’ve got it, and my dd was referred to gynae at 17 with all the same symptoms. They’ve refused to investigate because they say she’s too young, but fitted her with a mirena coil. She’s been suffering since she started her periods at the age of 10. She has to wear a tens machine for half the month and has terrible flooding and constant anaemia.

It’s heartbreaking to watch your daughter go through it, with the knowledge that 30 years later, attitudes and treatments are no more advanced than they were when we first tried to get help. 😢

I was laughed at by my doctor when I went at age 27 having had symptoms of endometriosis for years. He was really condescending and said "I suppose you've been reading those scare stories on the Internet and think you're going to be infertile". Guess what... when I was finally diagnosed with stage 4 endo ten years later - yep, infertile. One ovary was stuck down to surrounding tissue, causing excruciating pain when I moved, and so badly scarred it was completely non-functioning. Needed 6 rounds of IVF to eventually conceive.

Does anyone know if endometriosis runs in families? Do any of you also have family members with this?

My mum had it but I don't, and as far as I know my aunt and grandmother didn't. I take after my father quite a lot though.

My mum had a hysterectomy in her mid 40s and hers did go away. This was back in 1982 so quite remarkable she was taken seriously and operated on really.

Does anyone have IBS type symptoms with endo? I keep getting excruciating pain before I need to go at the minute

My mum had a hysterectomy in her mid 40s and hers did go away. This was back in 1982 so quite remarkable she was taken seriously and operated on really.

Not remarkable really. Back then gynaecologists thought they were doing any woman who had completed her family a favour if they "took it all away". Loads of relatively young women had hysterectomies at the drop of a hat. I've no idea why my mother had her hysterectomy in her early 40's, she never discussed it, but presumably not cancer as she lived well into her 90's 🤷‍♀️

Not endometriosis related but just general male consultant behaviour:

My DD works in the theatre dept at my hospital and came home the other day saying "I really hate Mr YY".
Apparently a senior, female registrar had been doing a LSCS and there was a heavy blood loss (over 2 litres) so she called Major Obstetric Haemorrhage , which kicks off lots of help and interventions. The bleeding was under control by the time the Obstetric Consultant came in and he immediately started belittling the Reg for panicking, it wasn't a MOH, wasting resources etc etc.
The anaesthetist stuck up for her and said it met the protocol criteria and that's why we have protocols to ensure action is taken promptly before things get out of hand.

Just another way these male consultants gaslight and undermine women.
No wonder there are so many problems in the maternity services.

Yes!

Not surprised at all. Plus this isn't the only Dept of the nhs where this is going on. I have no idea how it can be changed though.

So many women's health conditions receive gaslighting treatment, it's disgusting

I don't know if any women's groups are explicitly stakeholders with NICE or the NHS commissioning groups but it feels as if they should be!

These accounts are so unsurprising yet distressing and painful to read.

I've just read this thread open mouthed and am even more shocked and dismayed to read all of your stories too.

This is scandalous

At wits end... I won't stop bleeding www.mumsnet.com/Talk/womens_health/4862834-at-wits-end-i-wont-stop-bleeding

I just thought it remarkable that she was diagnosed. But take your point that they took wombs away at the drop of a hat.

Interestingly someone I know has endometriosis and takes zoladax for it but her gp surgery has recently said they can’t carry on affording to provide it on an nhs prescription so now she has to buy it privately. Even though some other GP surgeries do. I guess technically it’s not licensed for it so they get away with it, although they’ve clearly said it’s because of the cost! And of course men who need zoladax for prostate cancer get it on prescription. But because endometriosis is a woman’s issue they don’t investigate the treatment enough to licence it for endometriosis even though it’s well known that it works.

About 20 - 25 years ago, I pulled up what felt like every paper on the PubMed database concerning endometriosis. It seemed to me back then that researchers were starting to look at the immune system as possibly being involved.

The dominant thinking up until then seemed to be that for some women, endo cells were, for some reason specific to those women, moving outside where they should be, and that those cells stay where they should for all other women.

The new theory I saw cropping up was, 'what if ALL women have endometrial cells relocating elsewhere - but for most women it doesn't cause endo? Why would that be?

The thinking seemed to me to be -

'the immune system is pretty amazing, not only can it identify cells that are foreign to it, it can also identify cells that are of the body, but not in their right location; and it will zap a mis-located cell as readily as it zaps a foreign cell. What if the immune system malfunctions or is already defective, and cannot spot the mislocated cells? Is this the cause of endometriosis?

Did this immune system theory go anywhere?

Just anecdotally- it seems to go hand in hand with other disorders of the immune system, like coeliac disease. I know several women who have both .

Interesting, Dd has coeliac disease and other bonkers stuff like POTS and EDS. Her body really doesn’t like itself!

I have a lot of really random autoimmune conditions...
my body kills off my white blood cells and also goes crazy with histamine and thinks I need an allergic reaction to exercise

I took me until the age of 40 to be diagnosed. Despite having stage 4 endo on my bowel and bladder, I have been waiting since 2019 for surgery. The nhs in Wales has a 7 year backlog.

Gaslit doesn’t quite cover it! I have been made to feel like a hypochondriac, druggie and malingerer, despite the fact I have had to give up my previous career due to their inability to support me.

Paw2024 my white blood cells always come back as low on blood tests and I’ve never understood why. I’ve just been told (at 50), that I have endometriosis after decades of issues, I wonder if there is a connection there? I need to look into this a bit more, maybe all my health issues are connected?

Floopyfloop it is dreadful so many women are left suffering and struggling with life because of their undiagnosed and untreated health conditions.
Like you, I have spend a long time (since 1998) going back and forth to GPs, gynaecologists and gastroenterologists with my constant health issues. Time and time again it’s been implied that it’s all in my head, down to anxiety or simply just ‘normal’ for women. Antidepressants were always the answer to everything!
No one has taken me seriously, even when my ferritin levels were down to 3 and I had to beg for iron infusions because I couldn’t climb the stairs without seeing stars.
My health issue have ruined my chances of the career I wanted and now I work just part time and as a result money has always been tight. And now, at 50 years old I am only just being told I have endometriosis. The wait just to see the endo team is 40 weeks long. God only knows who long a laparoscopy and then hysterectomy will be?
I really hope you hear soon, a 5 year wait is ridiculous but I am not surprised, my sister has parathyroid disease which was picked up 3 years ago, the calcium in her blood is constantly too high but they keep leaving her, her op was supposed to be this month but they have put it off, again!

Good piece in Guardian. I'm pleased there's so much in the news about it.

https://www.theguardian.com/society/2024/jan/26/endometriosis-uk-women-tell-of-misery-periods

Not surprised about this in the slightest. I was diagnosed during a laparoscopy for something else and it was treated but I was advised it will come back obviously, fast forward 9 years and I’ve had the bloating/pain/ bowel problems for around 5 years, consistently written off as something else, wonderful GP though who referred me to gynae, who disappointingly said my issues were due to PCOS ( had been diagnosed as borderline) and was so incredibly dismissive of my endometriosis saying it probably isn’t “ that bad” “good job I’ve finished having children ( I hadn’t) and for me to cut out all sugar and only eat salads (wtf?) and then come back in 6 months and she ‘may’ consider a repeat lap in the next few years. Needless to say I cancelled my follow up and have tried to manage it via my GP.

I feel it’s so misunderstood, the range of symptoms are so wide and varied but we as women know our bodies, I’m currently sadly miscarrying and had such a long gap between my children that I’m now so worried the endo has caused this and that it will cause ongoing problems ( it took a lot longer to conceive this pregnancy than others) however Due to the waiting lists and the fight to get anything done I feel at a bit of a loss.

the theory of other disorders makes sense, I also have an under active thyroid and friends that have endo have thyroid problems, or RA or coeliac, it’s interesting

@Paw2024 yes I get really bad Ibs symptoms it used to be around when I had my period but seems to flare up randomly, it’s quite debilitating as there’s no predictor what will set me off, and I now just can’t go out to eat as the bloating can come out of nowhere and makes me feel so ill