“I first 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-on-Sea. “I didn’t know much about it, and realised there was very little awareness, support and education around it. He’s 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 often 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 aged 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 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.”