Woman's struggle to get endometriosis diagnosis: 'The pain was taking over my life'
Lucy Pickett was eleven years old when she started her periods and vividly remembers the excruciating pain every month.
"All girls are warned about ‘period pain’ and I’d take paracetamol and have a hot water bottle to help, but often I’d be in agony," says Pickett, now 28 and an illustrator from South East London.
"It was a dull pain in my stomach, lower back, hips and legs but I’d also have a ‘shocking’ pain – like the sensation when you hit your elbow – all through my body. My mum was very worried as I had to miss days from school.
"As I reached my teens, my periods were heavy, erratic and painful. Sometimes they would last for a month.
"I would visit the doctors two or three times a year but they would say: ‘It’s a bad period, take some more painkillers’. It was only when I was 16 and put on the Pill that things seemed to settle down."
Read more: Why Alexa Chung wants you to know she has endometriosis
In her twenties, Pickett still suffered mild symptoms. Aged 25, and while studying at Cambridge Art School, she decided to give her body a break from the Pill - but her ‘bad periods’ returned almost straight away.
"On one occasion, the pain hit me like a truck," says Pickett. "I was working on my own in an art gallery and I had to shut it down for the afternoon because I was doubled up on the floor.
"The pain was taking over my life. I used to cycle everywhere but couldn’t ride a bike or even walk for five minutes to reach the train station.
"I had no idea what was causing it. A work colleague had mentioned endometriosis and I wondered if that could be the cause of my problems."
One in ten women of reproductive age in the UK suffer from endometriosis, where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.
Read more: One in 10 teenage girls have endometriosis – but they have to wait years before diagnosis
It is the second most common gynaecological condition in the UK and up to 50% of women with fertility problems suffer from it. Yet the average woman has to wait over seven years for a diagnosis.
For Pickett it was longer. "Each time I had an appointment with a health professional, they were generally dismissive. One nurse said to me: ‘Oh you’re not used to your periods yet’ – and I was 25! It was very frustrating."
Watch: Olivia Culpo says endometriosis ‘slowly takes over your life’
It was in October 2019 that Pickett was eventually diagnosed, but only after collapsing at her mother’s house.
"It was the worst pain I’ve ever felt in my life," she says. "Mum drove me to A&E and it was terrifying."
Pickett was suffering from sepsis after an abscess on her ovary became infected.
She was also diagnosed with an endometrioma – a type of cyst caused by endometriosis – which can lie dormant for years.
"I was scared that I’d need emergency surgery to remove my fallopian tubes or ovaries," says Pickett. "I’ve always wanted a family in the future so it was very upsetting to think I might lose that chance. Thankfully the antibiotics worked and I was out after six days."
Read more: Signs and symptoms of endometriosis
Three months later Pickett had an appointment with an endometriosis consultant but was upset afterwards. "I came out of the appointment in tears," she says. "I still didn’t understand what I was suffering from, what could be done and whether I’d ever be able to have children."
After another hospital stay with sepsis over Christmas in 2019, Pickett needed answers.
Her boyfriend Lewis, 28, an IT worker had private healthcare and it was via him, that she was booked an appointment to see Mohammed Mabrouk, a consultant gynaecologist at Spire Cambridge Lea Hospital and co-director of the Endometriosis centre of Cambridge Hospitals.
"By now, the UK was in lockdown but I had a virtual consultation and for the first time, I really felt listened to," says Pickett.
"We discussed various treatments and we opted for laparoscopic surgery in October 2020. The endometrioma was completely removed as were the endometriosis lesions found around my bowel.
"After the operation I immediately felt better."
Much to Pickett’s relief, no ovarian tissue was removed and her fallopian tubes were working well.
"I know I’m never going to feel 100% but I can now live life much more fully than before," she says. "I do worry about whether it will come back and whether or not I’ll be able to have children, but at least I know what I’m dealing with and that there’s treatment available."
Watch: Why is it so hard for Black women to get diagnosed with endometriosis?
