Updated: Mar 30
It's Endometriosis Awareness Month - let's talk about this painful and stigmatised disease.
Endometriosis is common, despite a lack of public knowledge on the condition, and affects over 1.5 million people in the UK. It can be painfully debilitating for those who battle it every day, with significant lasting effects if not diagnosed early enough.
Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed, but there is no way for this blood to leave the body, causing inflammation, pain and the formation of scar tissue. There is currently no cure, but there are different treatments available to reduce the severity of symptoms and improve quality of life.
In 2018 an All-Party Parliamentary Group (APPG) for endometriosis was launched. The group was set up to debate key issues and investigate how patients can receive the support they need. In October 2020 the group released a report revealing the stark reality of diagnosis and treatment of the condition in the UK.
The report highlights statistics that confirm patients with endometriosis face many obstacles, some completely unnecessary, before they can even receive care. On average, it takes eight years for diagnosis in England, the same as a decade ago. This increases to eight and a half years in Scotland and Northern Ireland, and nine years in Wales. Prior to diagnosis 58 percent of people visit their GP over ten times and 41 percent visit over 15 times.
Sandi Monger, 26, from Norwich, is all too familiar with the symptoms, suffering from incessant pain and sometimes constant bleeding, “When I was younger, I would black out, lose my eyesight and everything, because it would just hurt too much. I was having periods every ten days and they would last from two weeks to six months. I also had pain when I had sex and bleeding after,” says Sandi.
Sandi started going to the doctors for her pain six years before she had surgery for a cyst and was repeatedly misdiagnosed with other health conditions during that time. “I was misdiagnosed with a hip impingement when I was 15. When I was 17, I had an abnormal X-ray and they sent me for an MRI scan which they said was normal, but I later found out I had multiple cysts on my ovaries. When I was 19, they misdiagnosed me with slipped discs and then when I was 20, they misdiagnosed me with hip dysplasia. I think I saw about 15 different doctors. I went to five different GP practises and three different hospitals and most of the time they said, ‘there’s nothing wrong with you, this is all normal’. Another doctor said, ‘oh, it’s probably just IBS’ [irritable bowel syndrome],” she continues.
Kayleigh Avis, 24, from Kent, felt she wasn’t taken seriously by her doctor: “I’d gone to a doctor for years and she just kept telling me it was my mental side making up the pain. She wouldn’t give me any pain medication. It wasn’t until I had a large cyst that I was scanned, and they found both cysts and endometriosis,” she says.
The issue is hugely affected by gender bias, with young women not having their pain taken seriously and regularly feeling the dismissal is due to the combination of their age and gender.
Olivia Martin, 20, from Hertfordshire, was fearful of the long-term effects of endometriosis and felt her age affected her treatment: “I know I was so scared at the thought of infertility, which is a huge effect of having this condition. They [doctors] were really hesitant to do or discuss anything other than put me on the pill as I was so young,” she says.
A lack of research into the disease is a contributing factor to the absence of information circulated to young people.
Kayleigh believes that information on how to detect the condition should be common knowledge: “I think women need to be made more aware of what endometriosis is. Every woman knows that periods are painful, and we get stomach pain, but we need to learn to differentiate between what is ‘normal’ and what could be more serious. We need to learn about ongoing impacts. In a way I feel it’s slightly sexist as I’m sure if this was a male health condition it would be looked into greatly. But women are kind of left to deal with it,” she says.
Abigail shares Kayleigh’s beliefs, “I feel when you learn about periods you should also learn about the warning signs of PCOS [polycystic ovary syndrome] or endometriosis because sometimes it can be hard to tell if you have something, and it’s important to reinforce to girls at such a young age that if you think something is wrong with your body, you need to go to a doctor’s and speak up about it,” she says.
Some of the most startling statistics in the 2020 APPG report highlight the extent to which this condition currently affects sufferer’s quality of life, with 89 percent saying it affected their ability to lead life as they want. The numbers hugely indicate the mental health impact endometriosis can have, with 90 percent saying they would like access to psychological support but were not offered any.
Tesni Llwyd Roberts, 22, from Anglesey, set up the Facebook group ‘Not Ovary Reacting’ with a friend, after feeling there wasn’t anywhere for people to get the support they required when dealing with endometriosis. “We were both suffering from endo and polycystic at the same time, we were in the same year at school, but we didn’t know each other had it because it’s such a taboo subject, so we thought we’d make this group to help other girls, so they don’t feel alone, so they can talk and interact and there’s somewhere they can feel safe," she says. Tesni can relate to the feeling of being ignored by doctors. “It’s like they [doctors] don’t want to help us girls and just tell us, ‘it’s just period pain, get on with it, go home and stop being a wuss about it,’ they don’t want to listen to us,” she says. Creating the page has slightly eased the emotional pain the condition can cause: “It’s so nice that we’ve been able to create this to help girls who were feeling lonely, feeling like they couldn’t talk to anyone, they’ve got a place where they can just talk and rant about it because there is no counselling, no help at all. It just provides a platform so that they don’t feel alone, we’re like a little family on there,” says Tesni.
All of the women believe persistence is key if you feel you might have something more serious than normal period pain.
Abigail says, “I feel like when you go to the doctors you kind of have to exaggerate, even though the pain is bad, you have to make it ten times worse for them to actually consider listening to you.”
Olivia knows you have to listen to your body and trust yourself, “Please, if you suspect you have anything, go to the doctors and fight to get a diagnosis. Don’t let them tell you that bad period pain is normal. If they don’t listen, do your own research into specialists and tell them you want a referral, and they may listen,” she says.
After struggling for years, Kayleigh finally found a doctor who took her pain seriously, “Keep pushing. Although you shouldn’t have to, when you finally get the diagnosis it’s such a relief. Also, do your own research. I know doctors hate it, but if you can show images of endometriosis versus scan pictures it lets them know they can’t just brush you off,” she says.
The struggle doesn’t end with a diagnosis. In fact, it’s usually only the beginning. After many misdiagnoses, Sandi finally knows endometriosis was to blame for her list of symptoms, but there is no quick fix. “Even when you’re diagnosed, you’re still fighting for help,” she says.
For more information and support visit the Endometriosis UK website.