Rosie* had always had heavy, painful periods. But this one was different. One Saturday morning in August 2018 she woke up in excruciating pain. “I was beside myself,” she explains, “I could hardly walk.”
After initial checks from her GP, Rosie was referred to a specialist and had a number of scans. She was diagnosed with endometriosis in October 2019. “It’s taken 12 years [to get a diagnosis],” she says.
Endometriosis is a condition in which cells similar to those that form the lining of the uterus each month appear in other parts of the body, usually around the pelvic area. Due to their location, the cells have no way of leaving the body and lead to inflammation and pain for those affected.
“It’s been so taboo.”
About one in 10 women of reproductive age in the UK suffer from endometriosis, according to charity Endometriosis UK. Symptoms can include chronic pain, fatigue, depression, pain or problems when having sex, infertility and a difficulty in fulfilling work and social commitments.
On average, it takes 7.5 years to be diagnosed with the condition. Although the procedure needed to diagnose endometriosis – a laparoscopy – does take some time, other factors exacerbate the wait. One element is the lack of awareness around endometriosis and its symptoms.
Hackney resident Ailsa Mullins suffers from endometriosis. To raise awareness of the condition and the volume of women in the UK affected by the disease, she is running 110 KM in March.
“For so long, anything to do with periods, or women’s health as it’s often referred to – which is kind of outdated itself – hides away from it. It’s been so taboo,” she explains. “As you get further down the line [with endometriosis] and you actually speak more openly with people around you going through the same thing, you know this isn’t normal.”
In the past year, the government has been encouraged to provide further support for endometriosis sufferers. The All-Party-Parliamentary Group (APPG) on Endometriosis published a report in October 2020 from a survey of 10,000 people suffering from the disease. It highlighted that 58 per cent visited their doctor more than 10 times, 43 per cent visited doctors in hospitals over five times and 53 per cent had been to A&E with symptoms. The APPG called on the government to reduce average diagnosis times, with a target of four years or less by 2025 and a year or less by 2030.
“There are one in 10 women in the UK that suffer with endometriosis. If you have 600 female members of staff, that’s at least 60 people that are suffering.”
Emma Cox, CEO of Endometriosis UK, which works to raise awareness of the disease as well as supporting sufferers, says it is vital that we normalise the conversation around periods. “We need to equip children and adolescents with the right words and knowledge to recognise [whether] what they’re experiencing is a normal period and when they might need help,” she says.
Emma highlights that a word such as “vagina” is still viewed as rude, despite simply being the term for a part of the body. This contributes to the stigma around talking about menstrual well-being.
From the age of 12, Sinead McGrath had suffered from incredibly heavy and painful periods. They would last a week or longer and she would be forced to miss school to deal with the pain. But it wasn’t until she was in her twenties that she was diagnosed with endometriosis.
Although since her diagnosis her periods have become “more regular and not as heavy as they used to be”, Sinead sometimes experiences “the most horrific dizziness [when on her period] that really does become debilitating”.
The pain and fatigue can be particularly distracting for Sinead when it comes to work. “I think businesses need to start taking it seriously,” she says. “There are one in 10 women in the UK that suffer with endometriosis. If you have 600 female members of staff, that’s at least 60 people that are suffering.”
Sinead says businesses need to be more supportive of women going through endometriosis diagnosis and treatment, and this starts with awareness of the gravity and extent of the condition.
“It’s not someone being flaky sometimes”, she says.
Emma at Endometriosis UK says there needs to be more support for employers to recognise endometriosis. Because of the cyclical nature of the disease, “some employers find it quite hard, but that is a recognised pattern of disease. It’s not someone being flaky sometimes”, she says.
Faye Cox (no relation to Emma Cox) was diagnosed with endometriosis 18 months ago, “having suffered for about eight years, not realising really what it was”. Each time she had a period, she was in so much pain that she “wanted to call an ambulance every time”, and would be “unable to do anything for about two or three days.”
Like Rosie, Alisa and Sinead, Faye says the best way to improve support for women with endometriosis is by raising awareness of the condition and educating people on what symptoms to look out for.
Faye encourages women who have any “level of pain that is affecting them to push a bit harder” when being checked by a GP, and perhaps to ask whether the pain they are experiencing could be endometriosis.
For women who are experiencing abnormal levels of pain while menstruating, it is clear that getting checked by a GP as soon as possible is very important. Raising awareness of the symptoms of endometriosis and assisting sufferers in getting a diagnosis are also a top priority in supporting those with the disease.
“Do ask your GP,” says Emma, “they will not be put off by any of the stigmas associated with it. They are there to help you.”
*Surname has been left out for privacy
