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

Was disgusted but not surprised to read this. Shaming and humiliating women, dismissing and ignoring women's pain - its everywhere, and goes way beyond the medical profession. Its right through society like writing through a stick of rock. I wish I had some easy answers but I dont

It took me 20 years of trips to the GP with painful heavy periods to be diagnosed. It’s grim. It’s not just male GPs - female GPs/nurses have also shocked me with what they have said to me!!

I live in the highlands so have to travel to Aberdeen/Edinburgh for treatment.

It’s not an NHS problem though - Women all over the world are fobbed off and misdiagnosed. The real problem is a lack of funding for research and lack of knowledge by healthcare professionals.

Agree with pp that it goes further. I had surgery a few months ago and my male manager at work refused to talk about it as “it’s personal”!! Honestly.

Gas lit is exactly the term by 22yo Dd used when they recently tried to fob her off. It was a phone appt and Dd has textbook symptoms, the dr listened and said they didn’t think Dd had endometriosis because if she did the pain would be worse during her periods. Which is what Dd had said. But the dr had focused on the fact she does sometimes have lesser pain at other times of her cycle.

so Dd repeated that the pain is worse during her period. Dr just said “no it’s not endometriosis, I’m discharging you”. Thankfully Dd is a bit bolshy and told the dr she hadn’t waited a year to be discharged and she wanted a second opinion.

so she had a f2f appt which she asked me to come to and help advocate. We went armed with a print off of the NICE guidelines and what do you know she’s now on a waiting list for a laparoscopy as per the NICE guidelines.

but someone who didn’t know about nice guidelines, who wasn’t as confident, etc would just have been discharged. It’s a disgrace.

8 or so years ago I said to a GP I wondered if I had endo
She said "probably but unless you will go on the pill we can't do anything"

Now I'm waiting for a specialist endo centre (after changing doctors) because it appears I have it so badly (because it's been left) it's affected my bowel, bladder, I have kissing ovaries and covered in chocolate cysts internally

The “it’s just period pains” and then a gynaecologist telling you your level of bleeding is normal.

it took me around 8 years to finally be diagnosed (after seeing a female gynae may I add)

I was on tramadol and that barely managed the pain. Had an implant and taking the pill to reduce the bleeding and still bleeding through a pad and tampon in an hour

I have since had 2 operations to remove as much as possible but there was a lot on my uteral sacral ligaments which has caused damage that can’t be undone.

I was 16 the first time I visited a doctor with the pains and I was fobbed off with Irritable bowel syndrome

Not surprised, I am in the most awful awful awful pain in legs and back plus ridiculously heavy clots that I can’t even leave the bathroom let alone the house, excessively long bleeding etc
I live in a rural part with only one male gp, and each time I’ve approached him about it he’s basicalllt dismissed me that it’s normal and quizzed me about anxiety medicine instead I’ve given up.

The issues with endometriosis will stop when the big pharmaceutical companies find a cure that doesn't involve surgery, so they can make billions from women and the lazy GPs can just prescribe a pill to make you go away.

Or maybe they should get off their backsides and actually fund and research the genetic code that from birth triggers endometriosis in some people and not others.

Maybe when they invest in the link between high histamine, high oestrogen and endometriosis they may get somewhere. It's starting them in the face.

Until then they will insist it's linked to periods, insist the disease can be fixed with a hysterectomy and hate the fact it's a costly complex benign cancer. And should be treated as such. But I believe it comes out of GP budgets? Happy to be wrong, so they don't like the expense of the disease.

Don't you love the way it's in the top 10 most painful conditions and yet treated less than diabetes.

Not surprised by this at all. I ended up going private for excision surgery (thank the universe for DH private medical insurance through his work) as our local healthboard only offer ablation which wasn't even offered to me when they did my laparoscopy and need future surgeries with a bowel specialist too as it's on my bowel. Constant gas lighting by the medical 'profession' utterly unacceptable

NICE guidelines for diagnosis and management: https://www.nice.org.uk/guidance/ng73

Surgical guidelines underway: https://www.nice.org.uk/guidance/indevelopment/gid-ng10393

Technical appraisal underway for a drug (part of it is in public and can be attended virtually in March): https://www.nice.org.uk/guidance/indevelopment/gid-ta10873

Endometriosis topic: https://www.nice.org.uk/search?q=endometriosis

I'm always sorry and angry that so many female HCPs are complicit in ignoring women's pain and policing their response to it.

For all the guidance about how to have difficult conversations, it's especially problematic when the party with the most of the power has no wish to be open to considering that their (unconscious) biases may be actively harmful.

'The issues with endometriosis will stop when the big pharmaceutical companies find a cure that doesn't involve surgery, so they can make billions from women and the lazy GPs can just prescribe a pill to make you go away'

Think you're spot on sadly 😔

@whyamiawakestill what's the histamine link? I have a urticaria condition...
I'm on a drug that stops IgE attaching itself to other cells and works like a miracle but no difference to my endo

It's only just being looked at I've been bleating in about the link for over 10 years, that there is a direct link between women with endometriosis and high histamine levels, it's briefly related to the mass cell activation, high inflammatory response and is slowly being talked about.

This is a pretty basic article but there are medical papers (few) I've read a few.

endometriosis.net/clinical/intolerance-to-histamine

One thing to note for women with endometriosis, is that taking HRT maybe create issues, not due to the oestrogen although I'd strongly advise patches not gels to avoid spikes for Endo women. But due the histamine reaction that can be cause by HRT, if you are already living with high histamine the HRT can trigger reactions, so be alert to that and know the signs.

Did or does anyone else with endometriosis who gets hay fever ever put the link that their periods and pain lessened in the spring and summer months- Due to taking anti histamines?

So I'm 3 years out of wide excision in my early 40s I had to pay a London surgery to remove it as the NHS couldn't see it do it didn't exist, wasted money on scans and 10 years of knowing it was flaring.

But during that time I changed my diet to low histamine and I take 2 daily (Amazon) and managed to get my endometriosis manageable.

@whyamiawakestill thank you, that's interesting
I'm on 4 antihistamines daily plus Xolair and my endo is actually worse but I think that's more because it's got worse rather than the medication making it worse
I was on more antihistamines but I either didn't have endo at that point or it wasn't noticeable

Not in the UK but i was prescribed a drug called dienogest which also acts as a contraceptive, which has improved the pain from endometriosis significantly. Does anyone else take this?

just googled it and it contains progesterone (like the mini pill or mirena coil). Dd has been advised to have a coil fitted at her laparoscopy as they say it will help.

Progesterone birth control is the most common treatment for endo, I got the mirena coil inserted during my laparoscopy for the same reason ☺️

Yes exactly- took me 25 years to be diagnosed with stage 4 endometriosis - four hour op as it was everywhere- rectum to diaphragm- distorted anatomy too. Was told so many times it was normal, I had ibs etc, went private in the end but even then had to switch consultants as first one suggested I could consider another baby to reduce symptoms (I had history of MC and IF)

the histamine link is really interesting as I also have Mast cell activation syndrome caused by reactions to high histamine- as well as postural tachycardia syndrome, will look into that.

also - I am recovering from childhood trauma .. In case this is a factor for people, this has potentially made it worse for me too :(

Dd has been told if they find it and remove it then it’s likely to come back. When I actually googled this it seems the stats are that 75% of women are still symptom free 5 years after having it removed. She is feeling pressured to having the coil and doesn’t know what to do. It doesn’t help that she doesn’t trust the doctors are telling her correct information.

I’m sadly one of these women.

51 in March with a 25+ year history of gynae and gastro issues.

I have been under my local hospital’s gynae department since 1998. Since 2015 I have had some kind of treatment or consultation every single year, until December 2023.
In all of these years of consultations, ultrasound scans, 4 hysteroscopies and surgery to remove uterine polyps, a uterine ablation (which has now failed resulting in even more pain), not once have any of the 4 or 5 gynaecologists I’ve seen ever suggested that I may have endometriosis, even when I told them that my sister, at the age of 44, was diagnosed with endo after a large ovarian cyst suspected as OC was found to be stage 4 endo.

I had a MRI scan in December (at my request as I am fed up with the pain and want to know what’s going on). Scan results have come back with diffuse adenomyosis and deep endometriosis.

I now have a 9 month wait just to see the endo team, God only knows how long it’ll be to have the laparoscopy to confirm it all and the hysterectomy to remove my buggered up uterus. By the time this is all over will probably touch the 30 year mark from my first gynaecologist visit to hysterectomy.

Gas lit is exactly how I feel. I am so angry and feel so overlooked.

Yes it can come back even for women who get a hysterectomy!

I got the coil and I’m v happy with it. I had bad side effects with the pill but haven’t had any ill effects with the coil.

I did not want to take the risk of it coming back. My endo was severe (literally on all my organs and big endometrioma on both ovaries) and I’m 31 so want to minimise impact on my fertility if possible.

I find the endometriosis subs on Reddit to be very helpful for info!

25 years of classic symptoms, infertility, horrific pain that had me rolling on the floor and vomiting, exceptionally heavy bleeding that lasted 11 days per month and clots. In the end i was bleeding so heavily I needed 4 -5 iron infusions a year. Had a few half hearted tests where i was told I didnt have endo even though they couldnt even see my left ovary on a ultrasound.

After having hormone driven breast cancer I managed to get them to finally agree to a hysterectomy as i had family history and was high risk. Woke from op to be told they couldnt do it as I had stage 4 endo, was 360 degree attached in my entire pelvis, my left ovary was no longer visable due to massive chocolate cyst and it was so deep in my bladder and bowels I would need an stoma if they continued. Doctor said I was too complicated and they couldnt treat me, so put me on a wait for specialist( 12 months plus wait). In the meantime they put me in medical menopause with Prostap injections. I was told this was very safe with no side effects apart from a few hot flushes.

The following year was horrific. I had such bad joint pain i couldnt stand and liquid morphine didnt even touch it. Moodswings that made me want to end myself. Hotflushes 24/7 where I was comstantly soaked with sweat and exhausted. The pain was so bad I was medically retired from work. I saw 4 seperate doctors who all said it was nothing to do with my injections and I must not stop taking them.

Finally got to see my specialist( who is great , thank God) First question she asked is what HRT was I taking to combat injections? When I told her I couldnt take any due to breast cancer, she was utterly horrified and said I should never have been given it if I cant have HRT and the excruitating pain I was in was from my bones crumbling. She also said a simple MRI would have shown doctors the endo without surgery. She went on to say that if I had been brought to her 10 years ago she could have performed surgery, but now the scarring is too great and its too dangerous. She said the doctors who kept pumping me with iron without further investigation should be struck off and theres a very good chance that the huge amount of hormoned created by the endo could well have contributed to my breast cancer.

So- to sum it up. Ive spent my whole life in agonising pain, anemic, and now unable to work because multiple doctors didnt care about my pain because im a woman. Ive had to have private therapy to help me come to terms with this but dont think I ever will.

I don't have endometriosis, but the way people describe being spoken to by doctors, you'd think it was this incredibly rare condition, where nearly everyone who's worried they might have it will actually turn out not to. But it's not rare at all, it's incredibly common. So why do so many people report having this experience, of doctors repeatedly going "ah, no no no, it won't be endometriosis"? It would be like going to the GP for years complaining of wheezing, coughing, sudden attacks of difficulty breathing, etc. saying you're concerned you have asthma, and them always trying to tell you that no, it's perfectly ordinary to stop breathing every now and again.

Edit: on rereading, I can see that this might read like I'm disbelieving people's experiences. I don't disbelieve them, I just wanted to be clear that I'm talking about other people's experiences, not something I've had to go through myself.

Because the people going to the doctor with severe pain are women.

There is the assumption that periods hurt. They're part of life so just take a paracetamol and get on with it. And for most of us women, this is the case. But for a substantial proportion of women, their periods are not like this. Unfortunately there is plenty of evidence that women's pain is not taken as seriously as men's. After all, we should be used to it; periods are painful, labour is painful, yet millions of women cope with these things, so they can't be that painful, really.

Women are not taken seriously.

Women, not people in general..

Yeah this happened to me for a while. I had a male gynae who didn't give a crap.

I had to fight for a diagnosis, taken years.