1 in 10 women from puberty through till menopause will suffer from Endometriosis in the UK. It is often defined as ‘the missed disease’ because on average it takes 7.5 years to diagnose in the UK. This is often due to misdiagnosis or women’s symptoms not been taken seriously by people. Once woman have been finally diagnosed with Endometriosis, there is still no cure. Women must suffer and live with the disease.

Many people in society aren’t aware about Endometriosis as it is a disease that hasn’t had mainstream coverage. The symptoms are often dismissed as ‘lady troubles’ and exaggerated. The issues aren’t often understood in the workplace and the needs are not met for Endometriosis sufferers.

Many employers in the UK don’t understand the suffering that these women go through. There isn’t a government scheme or law that helps to assist women suffering with Endometriosis. Women often take time off for this and are criticised or reprimanded, usually without any knowledge of the conditions and suffering.

Two women decided to talk openly about their experience with Endometriosis, and how it affects them in the workplace: 

Lauren Sayles, Age 26

Ms Sayles works in a pharmacy as a qualified dispenser but is also a blogger amassing over 11,000 followers on Instagram. She is from Sheffield and is crazy about 50s music. She has suffered from menstruation issues since she was a young teenager and has been struggling to get an Endometriosis diagnosis for years.

“I’ve found that people have less sympathy as the pain isn’t visible it’s hard for others to understand. Work have always been really good, I remember when I first started working and I would struggle to stand, be sick, shaking and be a complete mess. They used to immediately send me home. I try not to discuss it too much at work as I fear they won’t fully understand my condition.”

“All the staff know the pain I experience and now my condition. My manager and regional support manager, who are both male, are aware of it as well. These issues need to be more commonly spoken about as it’s more common than you think. I’m very lucky to have an understanding manager as he doesn’t question it and is really flexible and understanding.”

“I think issues relating to women need to be more commonly spoken about and women shouldn’t feel like they can’t talk about female issues because it’s embarrassing, or men are around. Even just a simple ‘are you okay?’ or offering to take a break to just sit down for 5 minutes. Companies should maybe give sessions or online training on these issues for everyone to become more understanding and supportive in the workplace.”

Ms Smith, age 30

Ms Smith is from Nottingham and is a manager at a specialist retail shop. A devoted wife and mother to her dog. She is a design artist in her spare time, and she plans to go back to College to study further. She was finally diagnosed in 2013 after many years of struggling.

“I still don’t think my friends and family even understand Endometriosis. They still think that it’s just a period and I’ll get over it. Most of my friends just think I’m boring. My work colleagues are fantastic as they try to understand and help me in whatever way they can.”

“Upper management make me feel like I’d lose my job if I had loads of time off. I don’t think they understand it. I need an operation to help my Endometriosis, but they think I should wait until after Christmas to have the surgery. Last year, I was in so much pain throughout the Christmas period that I ended up crying in pain in the stockroom and I just spent the rest of my shift there.”

“Getting time off for appointments is great, I’ve never missed one and we’ve always worked something out with that. I’m scared to have a lot of time off because of the repercussions that could follow it. Because my area manager and the company don’t fully understand my condition, it makes it harder to justify why I am in so much pain.”

“I think it would be better for women suffering if there was more awareness on Endometriosis. It’s not just a period, it’s a serious condition. My own husband doesn’t understand because there isn’t a lot out there about it. I struggle with pain at work and home, but I don’t want people to treat me like I’m different. I just wish more people knew about Endometriosis and understand that I’m not always going feel my best.”

The future?

Women all experience menstruation differently. For some it passes with a minimal impact on their daily life, but for others it becomes a lot more challenging. Endometriosis sufferers experience more severe symptoms such as premenstrual depression or excruciating pain.

Endometriosis UK is a leading charity that is trying to raise awareness but also implement a ‘Endometriosis Friendly Employer’ scheme. This scheme will help employers work towards improving work environment and breaking the stigma around Endometriosis and menstrual conditions.

This scheme is not compulsory and there is no legal push to help women in the workplace. Endometriosis UK released a press statement and said, “Endometriosis can no longer be brushed under the carpet, it needs to be taken seriously by those planning and commissioning NHS services.”

Awareness of the disease is slowing growing – but there is still a need for more to help women in the workplace.

Originally published in Issue 1 of The GIRLS IRL Magazine. 

Charlie Vogelsang