Sir David left an incredible legacy for women like me
To endometriosis sufferers, the late MP was a tireless supporter, according to one who asked him for help.
‘I had appealed my case twice with clinical groups, but I lost both times. He stepped in – and we won’
‘Ifirst approached Sir David Amess when I’d just found out I had endometriosis five years ago,” says Carla Cressy, 30, an accounts manager from Leigh-onsea. “I didn’t know much about it, and realised there was very little awareness, support and education around it. He was my local MP so I visited him at his surgery. I had no expectations of what would happen. I just knew I wanted to share my story with him, about how I’d suffered with endometriosis for an entire decade before I was diagnosed.
“He was so lovely – genuinely concerned and upset about what I’d been through. He said we need to do something about it, and he then really did. He went above and beyond to champion this community like a beacon of light. It was incredible. I am devastated that he’s gone.”
Sir David Amess, MP for Southend West, worked on many causes close to his heart during the 38 years he served in Parliament, but one of the areas where his work has created real change, and where he will be hugely missed, is in the endometriosis community.
Endometriosis is a disease where cells similar to those in the womb lining grow elsewhere in the body, but are unable to leave the body. This build-up of cells can lead to scarring, bleeding adhesions and an impact on various organs, while symptoms include chronic pain, painful sex and problems urinating and excreting. It is also one of the leading causes of infertility.
In the UK, 1.5 million women and those assigned female at birth are currently living with endometriosis, and it affects 1 in 10 worldwide. Yet there is still little awareness around the condition. In the UK, it takes an average of seven and a half years for a diagnosis. Many women suffer for around 12 years before their symptoms become severe enough for them to feel compelled to see a doctor.
“Sir David recognised the significant impact endometriosis could have, and really wanted to make a difference to help those with the disease,” says Emma Cox, CEO of Endometriosis UK, a charity that was working closely with an All-party Parliamentary Group (APPG) that Sir David set up in 2018 to raise awareness in Parliament of the condition.
“Women’s health and menstrual health has had really low priority for decades, and it isn’t easy to get politicians to take it seriously. There are taboos in talking about periods, poo and infertility – and they all overlap with endometriosis. But Sir David took it on and didn’t bat an eyelid about the taboos. He was just focused on bringing about change.”
One of Sir David’s goals when he created the APPG was for the government to provide education on endometriosis in schools. It’s something the group achieved over a year later, meaning menstrual wellbeing is now included on the English curriculum. “We made so much progress together,” says Cressy, who worked closely with Sir David on the campaign. “He really has changed so many lives, including my own.”
Cressy began suffering from endometriosis at the age of 14, with agonising periods. Her concerns were dismissed by GPS and gynaecologists.
Aged 20, she was hospitalised with constant pain. A year later, her bowels stopped working and she was regularly rushed into hospital.
But it was only when she was 25 that she was diagnosed with Stage 2 endometriosis. She had immediate surgery, but six months later had to undergo a second operation where Stage 4 endometriosis was found in her pelvis, bowel and bladder. Last year, she was forced to undergo a full hysterectomy, as well as have her bladder reconstructed and have stoma surgery.
“When I was told I needed a hysterectomy, I went to see Sir David. I was so depressed because I knew I wanted to be a mum, but to do that, I’d need to freeze my eggs. I couldn’t afford it, not after having four surgeries in two years, which meant I’d barely been able to work. I’d appealed my case twice with clinical commissioning groups, but I lost both times.
“Sir David stepped in and helped appeal my case again. We won.”
It meant Cressy was able to undergo fertility treatment on the NHS before having her hysterectomy, and now has four eggs on ice. “It’s changed my future,” she says. “He’s given me a chance at being a mum. If it wasn’t for him, I wouldn’t have that hope.”
Sir David was due to speak at a debate on endometriosis in Parliament today, and call for more investment into research. “He really wanted that debate,” says Labour MP Emma Hardy, vice-chair of the APPG on endometriosis. “We’d published a report last year, collecting evidence from women around the country with their experience of endometriosis, and Sir David wanted to draw attention to our recommendations.”
Their key goals are to reduce the time it takes for people to be diagnosed, ensure GPS have enough information to make them aware of the condition, raise public awareness, and fund more research into non-invasive ways of diagnosis.
“Right now, it’s only done by endoscopy, which is a really unpleasant procedure,” explains Hardy. “And there is new research by the University of Hull looking for biomarkers in urine, which doesn’t completely diagnose the condition, but does give indicators. We also wrote to the Department for Work and Pensions minister about understanding endometriosis as a condition, and why people could need regular, small amounts of time off.
“The main thing that comes from women is not being listened to, not being believed, taking ages to be diagnosed and then when they are, there’s not much change. Sir David wanted to change that. Endometriosis isn’t party politics, but he was really passionate about trying to do something about this condition. I don’t want him to be remembered as the person this tragedy happened to, but the person who worked so hard to improve the lives of people with endometriosis. We can’t replace him, but I hope we can find another Conservative MP to champion his work and continue with the APPG.”
Dr Larisa Corda, an obstetrician and gynaecologist, came to know Sir David through her work as medical ambassador for Endometriosis UK. “It’s fairly unusual for a man to draw the spotlight on what is a ‘women’s issue’, but his commitment and resolute dedication to highlighting the suffering of such a huge part of our population, many of whom must have been his constituents, too, was testament to the incredible man that he was.”
She recalls Sir David encouraging her to go into politics, due to her passion for improving women’s health, and says the entire endometriosis community is reeling from his death. “It’s an immense loss for women’s health and welfare, but our endometriosis community will ensure his legacy lives on through the work that he started and we will continue. I’ll never forget him smiling and telling us what a ‘marvellous’ thing it would be to change the status quo for women and girls.”
Sir David was also due to launch a charity, The Endometriosis Foundation, alongside Cressy. “I never thought I’d have to do it without him,” she says. ‘We’ve been working on it for three years, to raise awareness, inform and support people living with endometriosis. I just hope that going forward, I can make him proud.’