Video report by Fiona Marley Patterson
A businesswoman from Cumbria has set up a support group in the county to help women live - and work - with endometriosis.
Elaine Rémy has the most severe form of the painful condition, which started when she was a teenager.
Charity Endometriosis UK says the condition costs the economy £8.2 billion a year in loss of work and healthcare costs. They say more research is urgently needed to improve treatment options and long-term support.
Elaine Rémy told ITV Border: "I quite distinctively remember it being very, very painful and my mum had to take me to the doctor.
"I wasn't diagnosed until a long time afterwards until I was about 33. The vomiting and stuff, there was a lot of nausea so I cannot remember how many times I had to get off the train in Paris and just vomit in the bin."
Elaine had surgery to find out how bad her condition was. She said: "The adhesions had caused so many problems that I would need a bowel resection, I would need a resection of the deep lesions as well and also that I would need a hysterectomy so that was just like a bomb had hit me."
What is endometriosis?
Endometriosis is when tissue similar to the lining of the womb grows outside the uterus often on other organs, causing them to fuse together.
Women have endometriosis in the UK
The symptoms manifest themselves in multiple ways but include:
Heavy painful periods
Chronic pelvic and back pain
Charity Endometriosis UK estimates 1 in 10 women in the UK "endure unrelenting pain" every day as a result of the condition, and it takes an average of eight years to be diagnosed.
Average time it takes for someone to get diagnosed
A report back in October 2020 highlighted the "devastating impact" of the condition, and found no improvement has been made in its diagnosis in the past decade. It called for the government to do more to support those living with endometriosis.
Endometriosis UK says research is desperately needed. Dr Veena Rao, a GP in Cockermouth and Endometriosis UK Trustee, said: "I think it's because so many women's health issues don't take priority, which I think is unfortunate.
"Again, it seems to take seven and a half years on average from the onset of symptoms for a diagnosis so that's sadly the case. So we need to try our best to get this down."
Elaine has started an Endometriosis support group in Cumbria. She hopes more awareness and research will improve quality of life for women like her.
For more information and support, click on the links below: