WResearch has revealed that a sign with endometriosis in the UK is feeling “gaslit” by doctors due to a lack of knowledge of the condition, with many being “fobbed off”. More than 1.5 million women in Britain live with the painful condition.
The research, carried out by academics from Manchester Metropolitan University, found that “a lack of confidence to challenge medical experts meant that participants were likely to accept the medical discourse and not seek help in the future”.
Here, three women in Britain share their path to diagnosis and treatment.
‘You experience the psychological impact of pain all your life’
Sophie, 36, public arts worker in London
After almost 25 years of being told there was no reason for the pain, an ultrasound technician casually told me during a 2021 pelvic scan that I had advanced endometriosis and that I had an endometrioma on my left ovary. No other doctor or nurse had noticed this during scan after scan. There was a feeling of enormous relief: I had felt like a hypochondriac all my life.
I had a laparoscopy (keyhole surgery) in 2022 – sooner than the 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 to endometriosis.
I have since been advised to start using contraception, but the thought of deteriorating mental health holds me back – I was put on the pill at 12 and felt over the years that this was contributing to my depression. Despite experiencing debilitating pain again, a nine-month follow-up appointment was canceled and re-arranged this month – there is only one endometriosis doctor in my hospital.
Recently I have started having pain between periods and my periods have become heavier. I almost called an ambulance during my last period and am waiting for a scan but don’t know when that will be. I accepted a prescription for opioids for the first time, but I haven’t taken them yet. There are still huge gaps in knowledge and no cure for endometriosis.
The mental health effects of the pain are something no one talks about: planning your life around pain. You experience the psychological impact of pain throughout your life.
‘I had a hysterectomy at 31 – I was devastated’
Rosie, 60, self-employed dementia support advisoruh in Norfolk
From the age of 12 onwards my periods were always painful – I was told that all girls had excruciating period pain and had to continue with it. One morning while waiting for the bus when my period started, I almost fainted.
In my late 20s, I started experiencing real problems. I developed a ruptured ovarian cyst when I was pregnant at age 19, but my pregnancy continued and I had my second child at age 22. My period was worse than childbirth.
I was divorced with two children, but could not do any other work, so I cleaned houses where the owners were absent and had regular bedtimes. At the age of 29 I went to the doctor because I was going off the pill and was bleeding very heavily. The doctor said it could be endometriosis. I had never heard of it.
When I had a scan the radiologist said: ‘I hope you don’t want any more children’, which caused me to break down. It was so numb. I had a laparoscopy and my intestines, bladder and one of my ovaries were attached to my uterus.
At the age of 31, I had a complete hysterectomy. It was devastating – I had really hoped to get married again and have more children. It was a shock to the system. I was put on several types of HRT (hormone replacement therapy) but when I came off them I immediately went into menopause. When I had sex I was in excruciating pain. The hormonal rollercoaster was horrible.
After much research, eight years ago I found a type of synthetic estrogen that works for me and I have been pain free ever since. It’s a different world for me now. I had to arm myself, I became very knowledgeable. It’s so easy to wonder what might work – you’re never quite sure what to believe.
It took more than 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 came after almost twenty years of being told it was “normal”; I had painful periods since I was thirteen. It wasn’t until I took my partner to a doctor’s appointment that I was taken seriously. My partner said I lay in bed for days, screaming and passing out in pain. Only after hearing this from him (the GP) was I referred to a gynaecologist.
I had a laparoscopy at age 40 and was diagnosed with stage 4 endometriosis, but required 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 almost three years of waiting, I had a hysterectomy (removal of the uterus) and an oophorectomy (removal of the ovaries) in November 2023. The surgeon said my uterus, fallopian tubes, ovaries and intestines were fused together with scar tissue.
I haven’t had any pain since the surgery, which is amazing. It’s also strange 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 about all the lost time. I’m in a good place now and have people supporting me, but I wonder if things would have been different if I had been diagnosed earlier. It’s heartbreaking to think that I could have a child now.