The first documentary on endometriosis

[magicpotiontime]

Is on tonight, BBC2 at 9pm
hopefully this helps see changes to care but posting for traffic for those who are interested

Thank you for sharing, I will definitely be watching. I went back to the gynaecologist last week and have an MRI booked for next month. She was so validating compared to the 10+ years I had as a teenager being misdiagnosed.

Mine was exactly the same, she spent an hour with me discussing all the options
in the end my surgery was a full day, in theatre from 9.30am - 6pm

Watching it. Noting the misdiagnosis as IBS over and over again.

The endometrial tissue must be in the wrong places before puberty because so many of the women interviewed had pain from their first periods.

I will watch this with interest on catch up.
I’ve just been diagnosed with endometriosis at the age of 45. I was diagnosed with IBS when I was younger, but am 99% sure the symptoms were caused by endometriosis. If only someone had thought to check that 20 years ago!

Just leaving the Mumsnet medical misogyny petition here: https://petition.parliament.uk/petitions/764079

Its quite upsetting to watch. I had excision 20 years ago which led to me able to have my babies. I feel lucky I got the surgery after 10 years.

I’ve cried watching it. Before my operation I said I thought I would either die with the pain or my stomach would explode. I asked if I stabbed my own ovary if they would operate quicker
currently have dry socket and it’s not even near my endo pain

when I woke up and asked if they found it, she said “oh yes we found it… it took 2 of us over 8hrs to remove it”

www.endo1000.com/ researching endo takes donations from Joe Public.

This is what I wrote for an article

I asked years ago, at least 10 years if I had it. The GP shrugged and said did I want the pill, and if I didn’t there was nothing they could do

I nearly lost my job through sickness
Morphine didn’t touch it. I threatened to stab my ovary so they would remove it as an emergency
I couldn’t breathe or talk with the pain, the only thing I could do was rock on all fours

I thought painful heavy periods with pain down my legs and flooding was normal

Eventually I changed GP and went for an ultrasound scan in March 2021
Nov 2022 I had swabs, another scan
July 2023 they scanned and said I was full of endometriosis cysts and I needed a referral
August 2023 the awful pain got even worse
Dec 2023 I ended up in a&e with pain
October 2024 a&e again

I was referred to gynae and they had an MDT meeting in Dec 2024
It was over a year for my gynae appointment

May 2025 I had over 8hrs in theatre with an endo surgeon and a bowel surgeon

Your large right ovary contained 3 endometriomas and was morbidly adhered to the right pelvic sidewall as well as your fallopian tube and rectum
Your large sigmoid bowel was folded over in half and adhered to the right ovary
Your left ovary is enlarged with 3 more endometriomas and again stuck to the left pelvic sidewall and rectum
Your left fallopian tube is normal, the right is dilated
You had superficial lesions over your bladder
All testing confirmed endometriosis tissue stage 4 DIE and adenomyosis

DIE = https://www.leedsth.nhs.uk/patients/resources/deep-infiltrating-endometriosis/

Endometriosis costs the British economy over £12 billion per year and affects one woman in ten.

It would save money to have a prompt referral pathway for it, and it should be a "hear hooves, think horses" early differential diagnosis consideration for GPs.

I really feel for you. I also have adenomyosis and I did wonder whether Emma, the presenter, had that as well. It’s so painful and I have asked for a hysterectomy eventually.