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

Even once you’ve had a diagnosis, the treatment is woeful. I’ve got endo and adenomyosis and I’m post menopausal. I’ve been to A&E three times in the past two weeks, passing clots the size of dinner plates along with really heavy bleeding. I’ve been waiting on an emergency scan for four weeks (on the two week pathway) but still not been given a date. It’s excruciatingly painful, and literally feels like giving birth.

It was so bad on Friday DH rang an ambulance but they couldn’t get one to us within an hour and I’d have bled out by then so he took me himself and just hoped we’d get to the hospital in time. He’s really traumatised now. They just give IV drugs to slow the bleeding, then send me home. I’m not sure how much more I can take. I can’t leave the house in case it starts again.

Jesus @Redannie118 thats awful, I’m so sorry.

Your point about being pumped full of iron with no investigation rings so true. Dd has a ferritin level of 2.7. Nobody cares apart from to prescribe iron. Which she’s been on for years now!

Lots of this makes sense to me.

Ive always been prone to rashes, itchy ears, mouth etc. I’ve always felt like I’ve had high oestrogen - lots of PMS, carried weight on hips, legs and bum.
Separately ive been back and fore to the GP for years complaining about right sided pelvic pain. I was sent for a scan and told it was ovarian cysts and bulky uterus and given painkillers.

Im 50 now and for the past 5 years ive had excruciating ovulation pain that lasts for days, heavy periods and have developed bowel issues, lots of pain, loose stools and bowel incontinence.

GP did FIT test and bloods a few years ago - all normal, said IBS.

Went to GP to ask for HRT recently so I was given an ultrasound to check my womb lining first as the bleeding is pretty bad. Womb lining fine but tech said she couldn’t see my ovary on the right which is the side I’m always in pain with - it was tied around the back of my womb. The left ovary is also very close to my womb. She asked if I’d ever been diagnosed with endometriosis.

Back to GP who dismisses the scan finding and gives me gel and utrogestan.

I start the gel and within two days I am extremely anxious, clenched jaw and TMJ, dizziness, diarrhoea, short of breath.

I stuck it for one cycle and gave up - I was feeling horrendous within an hour of using the gel every day.

So I’m not on HRT and wondering if endo is the cause of my pain and bowel issues.

Should I go back and ask to be referred for a laparoscopy or are there scans that can pick it up?

Been happening years.. l went on a TV programme called The Time and Place ( used to be daily at 9.30 Am.. John Stapleton.. but because it was about Endometriosis.. fellow sufferer Anna Soubry hosted.. this was 1987.. loads of us ladies trying to get help etc etc.. luckily my Gynecologist was brilliant at the time and knew l wanted a second child and did everything to help me. I'd had a laparoscopy.. because I'd been drugged gang raped.. got gonorrhea from that.. which gave me PID which gave me Endometriosis..
8 years later l had my 2nd child after a miscarriage and ectopic.
My Gynecologist had stimulated my ovaries and clean my tubes.
2 years after l had her l had a total hysterectomy..
Now l have Endometriosis/ adhesions on my bowels/ colon/ intestine/ bladder and as far as my liver and pancreas..
So an hysterectomy doesn't always cure Endometriosis.
In the USA at the time they used the gauze.. wasn't used here.

I'm halfway through a course of Zaproxen. It's made little difference to the pain or bloating only change has been increased nausea, migraines and my hair is falling out.

I'm awaiting a hysterectomy as I've fibroids and suspected adenymiosis and endo I was told I was on the list last year to find they discharged me rather than putting me on the list six months wasted. Even after complaints I'm no further forward but at least on the list. No apology.

Last year I was having almost monthly iron infusion as the bleeding was so severe.

I can totally see why the therapy hasn't helped. I felt utterly enraged merely after 20 seconds reading what happened to you,

First went to ask the doctor about my excruciating pain and heavy bleeding when I was 14 after already suffering it for 3 years. Now, over 30 years later, I am still in pain, not just when having a period, but most of the time (thanks menopause!). And I still don't have a formal diagnosis. The best I've managed to get was a GP saying "yes it does seem likely to be endometriosis" but wouldn't add anything about to my medical record. I've been fobbed off by doctors all of my life and it's destroyed me.

It is completely shit that this is still happening. It took me 10 years to be taken seriously and referred to a gynae rather than the usual you just have a low pain threshold. Even my own Mother did not believe I could be in that much pain on my period; I couldn't sleep through the pain it was so bad.

Finally did all the meds and then laser lap to confirm that despite all the meds and a chemical menopause I still had active deposits. I was fortunate to become pregnant at that point because I had been through 18 months of treatment to remove as much endo as possible.

The thing that improved my life and isn't an easy option to take was to stop working. Ds1 was a toddler and I became a SAHM. He is almost 21 now and I haven't worked since. I still have friends who don't understand the extent of the daily fatigue and the pain at every stage of my cycle. Every month I am on a TENs machine and it feels like I am in labour. I use a heat pad, massage gun for my back and a hot tub for the heat. I am on day 6 of my period and my legs are numb and feel like they are on fire.

I am perimenopausal but am worried about trying HRT because I feel like my endo is getting worse as it is without adding more stuff into my body. Part of me wants to try having the mirena coil but the speculum being opened when having a smear pushes on something very painful (think pouch of Douglas where I definitely had deposits and scar tissue years ago) so I have always shied away from it, plus the whole no pain relief usually offered bit too.

@Paw2024 do the phrases "kissing ovaries" and "chocolate cysts" not make you so angry? These polite phrases used to describe horrific things going on inside your body should be renamed.

I follow an endo surgeon on Tiktok, he is amazing, does so many surgeries, really knowledgeable about endo, just not in the UK.

@whyamiawakestill What is the histamin link? Im intrigued.

Ah, yes. When I went to my GP about the fact that I had a burning band of pain around my uterus that seemed to get bigger every month, she said I seemed very emotional and had I considered going for some counselling.

Went private, got scan, had surgery.

Can anyone suggest a really great endometriosis doctor in or near London?

I've seen a lot of hearty recommendations for the people at UCLH. Has anyone here been treated there? (Women have managed to obtain an Out of Area referral or been able to exert Patient Choice.)

https://www.uclh.nhs.uk/our-services/find-service/womens-health-1/gynaecology/endometriosis

To be totally honest, I don't think I'd have been diagnosed had it not been for secondary infertility investigations (aged 30).

Up until then I'd always just been an unlucky woman with shitty periods.

Guess I'll never know.

I can thoroughly recommend shaheen Khazali at the lister, he’s incredible and does sees of severe endometriosis patients and will do through excision of it all

I dont know if he is still practicing but I saw Mr Kent at the royal surrey and nuffield. He really helped me. Diagnosed it when i had an abnormal smear that found endo on the cervix.

@whyamiawakestill

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?

yes I did! Assumed it was due to extra vitamin D but yes that would make sense! My cycles also used to get shorter in the summer months too, (I’ve also got PCOS)

my health progression was - migraines age 6, asthma age 9, dizziness/faintness/palpitations also age 9, hayfever age 14… when the severe endometriosis symptoms started.. (eg shooting rib pain (diaphragm Endo!!), not able to sleep through periods)… pain relief didn’t cut it and I would
be doing back to back paracetamol and ibruprofen… by mid 20s had digestive issues, infertility, then bladder issues… miscarriages…

it looks like the MCAS symptoms drove the POTS symptoms… but I’d always thought of the Endo / adenomyosis / pcos as a separate collection of symptoms and diseases, so it’s really interesting to see that link

I've read all the replies on this thread with increasing despair. And disbelief at the way women are being treated - even though my own experiences with medical professionals have been dismal.

I've read and researched my conditions for years and have always thought there's been a link between my histamine response and my cycle but now, reading this thread, I know for sure.

I've never pushed for a diagnosis for endo as I've always been fobbed off with the "some women are just unlucky with heavy, painful periods" response. My DP has been horrified to see me get out of bed and "drop a load of blood" (his words) on the bedroom floor an hour after going to bed with an Ultra tampon in. I stood up and flooded on the floor as if I'd poured a jug of liquid down between my legs.

DP trying to help me mop it up made it hit home to him how bad it is for me.

I also have inflammatory conditions including frontal fibrosing alopecia, MS and several other weird conditions that I believe are linked to my hormones. I have "nuisance" and "problem" patient on my notes as it took me 20 years of returning to my surgery asking for help before I finally paid to see a neurologist privately. I was tested and given my diagnosis which has finally been accepted by my GP.

If you can believe this, I was given a tentative diagnosis of MS 22 years ago as I had all the symptoms but was never sent for further tests.

My most recent complaint has been restless legs. After reading on the RL site that it can be caused by low ferritin I saw the GP and insisted on having the test. Ot came back as 2.1. Very low. Not surprising with the chronic anaemia I've had all my life. Every year I've tried to donate blood, failed the test and been referred to the GP. Every year I get given a pack of iron pills. Every year the bowel issues have worsened when I've taken them due to underlying bowel and bladder problems caused by MS.

My most recent disappointment was trying to get a cholesterol test as I'd been given a copy of a letter my brother was given from the lipid clinic. It's addressed to him but states clearly that all close family members need to be tested. The GP has refused the test as it's not addressed directly to me and also because...

"Your partner's cholesterol is fine so yours will be, too." If my DP hadn't been sitting next to me I'd put it down to my hearing going or my overactive immagination.

Anyone else got some unbelievable quotes? I think that actually beat being told by a female gynae that older women (I was 50!) only want HRT to make themselves look more attractive to younger men. And menopause symptoms only last 3-4 years then disappear.

It's more disappointing to hear these things come from women.

Good luck to everyone here struggling with these issues and get your ferritin level checked!

I think that actually beat being told by a female gynae that older women (I was 50!) only want HRT to make themselves look more attractive to younger men. And menopause symptoms only last 3-4 years then disappear.

I was speaking to a chum recently who started peri-menopause at 45 (heavy flushing and heat surges), completed menopause at 50, and is now in her early 60s and still having hot flushes that show as a tide of deep red, several times an hour. (She has to take in several tops a day to change.)

Thankfully I changed doctors and my new one is a breath of fresh air

Old one - no we can't increase your levo as you'll risk going over medicated - with a TSH of 4...

New one - here's a form for 20 blood tests for a baseline, and T3 is very important, and we go off symptoms not levels so here's a levo increase in the meantime. Oh and a gynae referral while I'm at it

Me < thud >

Yes Peter Barton smith, he did my surgery 3 years ago, plus 2 fellow Endo friends who I met via Instagram all hugely successful.

@agent765

I was asked by a female GP if I'd tried drinking barley water!!!

for my excruciating bladder pain after I'd had excision surgery that removed endometriosis on the "outside"

I was so shocked I just bloody nodded and kind of said hummmm .

After I'd left I wrote a complaint.

@Namechange600 maybe try antihistamines and low histamine diet for a while, you seem like it maybe a sensitivity you have.

Good on your daughter for standing up for herself and good on you for raising a daughter who can stand up for herself.

It isn’t easy in a patient/doctor situation when they are supposed to be the experts. And it is even harder when you are suffering and in pain to be able to advocate for yourself.

I hope your daughter gets a speedy diagnosis and treatment.

Tariq Misktry, he did my stage 4 excision surgery in October '22. It's been life changing!

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

My sister has it, I’ve just been diagnosed at almost 51 and our mum had years of gynae issues (and I’ve only ever known her in pain) so wouldn’t be surprised if she had it too.

I now have concerns for my dd15. She has painless but dreadfully heavy periods which frequently leave her anaemic. Doctor wants her on the mini pill but she doesn’t want to take it.

Not sure if I should be encouraging her to take the POP or push for further investigations? I certainly do not want her struggling for 30+ years like I (or her auntie) have.