Women with endometriosis in the UK feel “gaslit” by doctors because of a lack of knowledge of the condition, research has found, with many being “fobbed off”. More than 1.5 million women in the UK live with the painful condition.
The study, carried out by academics at Manchester Metropolitan University, found that that “a lack of confidence to challenge medical experts meant that participants were likely to accept the medical discourse and avoid seeking help in future”.
Here, three women in the UK share their path to diagnosis and treatment.
‘You have the psychological impact of pain your whole life’
Sophie, 36, public arts sector worker in London
After almost 25 years of being told there was no reason for the pain, during a pelvic scan in 2021 a sonographer casually told me I had advanced endometriosis and I had an endometrioma on my left ovary. No other doctor or nurse had picked this up during scan after scan. There was a feeling of massive relief – I’d felt like a hypochondriac my whole life.
I had a laparoscopy [keyhole surgery] in 2022 – faster than normal waiting time because an endometrioma on an ovary can cause torsion which can be an emergency. I had stage 4 endometriosis and they found it in five places. It took six months for a full recovery, but the pain was nothing compared with endometriosis.
I have since been advised to go on contraception, but the thought of the mental health deterioration stops me – I was put on the pill at 12 and over the years felt it contributed to my depression. This month, despite being in debilitating pain again, I had a follow-up appointment cancelled and rearranged for nine months’ time – there’s only one endometriosis doctor at my hospital.
Recently, I have begun having pain between periods and my periods have gotten heavier. I nearly called an ambulance during my last period and am waiting for a scan, but don’t know when that will be. I’ve accepted a prescription for opioids for the first time, but haven’t taken them. There are still huge gaps in knowledge and there is no cure for endometriosis.
The mental health effects of the pain are something no one talks about – planning your life around pain. You have the psychological impact of pain your whole life.
‘I had a hysterectomy at 31 – I was devastated’
Rosie, 60, self-employed dementia support adviser in Norfolk
From 12, my periods were always painful – I was told all girls suffer excruciating period pains and to get on with it. One morning waiting for the bus when my period was starting, I almost passed out.
I began to experience real problems in my late 20s. I had a burst ovarian cyst when pregnant at 19 but my pregnancy continued, and I had my second child at 22. My periods were worse than labour.
I was divorced, raising two children but couldn’t hold down other jobs so cleaned houses where owners were absent and I could lie down regularly. At 29, I went to the doctor because I was breaking through on the pill and had very heavy bleeding. The doctor said it could be endometriosis. I had never heard of it before.
When I had a scan, the radiologist said: ‘I hope you don’t want more children’, which caused me to break down. It was so unfeeling. I had a laparoscopy and my bowels, bladder and one of my ovaries were stuck to my womb.
At 31, I had a full hysterectomy. It was devastating – I had really hoped that I might marry again and have more children. It was a shock to the system. I was put on different types of HRT [hormone replacement therapy] but when I’d come off it, I’d have instant menopause. If I had sex, I was in excruciating pain. The hormonal rollercoaster was awful.
After a great deal of research, eight years ago I found a kind of synthetic oestrogen that works for me and I’ve been pain free since. It’s a different world for me now. I had to arm myself, I became very knowledgeable. It’s so easy to go down rabbit holes of what might work – you’re never quite sure what to believe.
It’s taken over 30 years of my life and five abdominal surgeries. It ruined my pelvic floor and, for a long time, my self-esteem. I look back and can’t believe what an impact this condition had, how it defined me.
‘It’s heartbreaking to think I could have a child now’
Amy, 43, therapeutic music practitioner in Manchester
My diagnosis had come after nearly 20 years of being told it was “normal”; I’d had painful periods since I was 13. It was only when I took my partner with me to a GP appointment that I was taken seriously. My partner said I spent days in bed, screaming and blacking out in pain. It was only after hearing this from him [that the GP] referred me to a gynaecologist.
I had a laparoscopy at 40 and was diagnosed with stage 4 endometriosis but needed further surgery. I still wanted children at the time and after 18 months of trying to conceive naturally, IVF was suggested. I went through one round but it didn’t work.
After nearly three years of waiting I had a hysterectomy [removal of the womb] and an oophorectomy [removal of the ovaries] in November 2023. The surgeon said my womb, fallopian tubes, ovaries and bowel were fused together with scar tissue.
I’ve not had any pain since surgery, which is amazing. It’s also odd, because I’m not used to living without pain. It’s a lot to come to terms with and deep down I’m really angry for all that lost time. I’m in a good place now and have people to support me, but I can’t help but wonder if things would’ve been different if I had been diagnosed sooner. It’s heartbreaking to think I could have a child now.
