Dunham is one of the 176 million women worldwide reportedly affected by the chronic condition that can cause painful periods and sex, as well as irregular and heavy bleeding, fatigue, diarrhoea and even infertility. It happens when the internal tissue of the uterus grows in other areas of the body, but very little is known about its causes and there is no definitive cure, yet.
By making her struggle public, the Girls creator and star has given some overdue visibility to the agony of many other women who, just like her, are forced out of school or jobs because of an illness that is often overlooked. Which is shocking, when you consider that – as Endometriosis Awareness Week (this week) aims to point out – the illness affects one in ten British women of reproductive age.
“Attitudes towards menstruation” and “normalisation of pain” are among the causes for diagnosis delays
According to the guidelines issued by the European Society of Human Reproduction and Embryology (ESHRE), doctors diagnose endometriosis based on the women’s health history, symptoms and signs, before confirming their conclusion through physical examinations and tissue analysis. But patients like Brimer are waiting "#TooLong", as British charity Endometriosis UK's new social media campaign points out. On average, they say, it takes over seven years for diagnosis.
Often, this is because women continue to be penalised by the stigma surrounding menstruations and often downplay their symptoms. Even the ESHRE included “attitudes towards menstruation” and “normalisation of pain” among the causes for diagnosis delays. And Brimer’s experience seems to confirm it: “I have always thought there was something not quite right about how I felt during my period, but I thought I must just be weak to feel like this when other women just get on with it.”
There needs to be more understanding about how this long term, debilitating illness can disrupt every aspect of a woman’s life, through pain, fatigue, and even mental health
“[We need] much higher awareness among GPs that period pain isn’t just something normal or something that can be brushed under the carpet,” she says, as she urges more doctors to take women’s menstrual pain seriously and refer patients to a gynaecologist or a specialist centre.
And more people, including women, need to be educated about this long term health issue; perhaps running awareness programmes and campaigns in schools would help, Barker suggests. “The general public probably don’t even know why they should care about endometriosis,” she says.
A long term, debilitating illness, endometriosis can disrupt every aspect of a woman’s life, through pain, fatigue, and even mental health. “Endometriosis affects everything I do, I have to work out how I’m going to manage the amount of energy I have,” confesses Katie Awdas, a 30 year-old teacher from Manchester.
Awdas was diagnosed after a laparoscopy in 2012, but her problems date back to her teenage years. It all started with heavy and irregular periods that turned increasingly painful. “I remember being a child at secondary school and in the sick room because I was in so much pain. But I just thought it was normal. We don’t discuss menstrual cycles in the UK, it’s still a taboo,” she says.
In 2012, after two consecutive trips to the A&E and an abdominal surgery performed when her pain was diagnosed as appendicitis, she was eventually referred to a gynaecologist. She has now had four laparoscopies already, to remove several endometriosis tissue growths.
If not treated, endometriosis can spread to different organs and require major surgeries to remove parts of the bowel, the uterus or the ovaries, for example. Awdas is now planning to have children with her husband, but they are worried conceiving might be hard, as the illness can also lead to infertility.
“In this context endometriosis has had an inferior place due to a lack of public awareness, despite being as common as diabetes and asthma in women.”
A medical condition is less likely to receive the attention of policy makers if it is neglected by the public. And as gynaecology professor and member of the endometriosis team at University of Edinburgh, Andrew Horne, notices: “In this context endometriosis has had an inferior place due to a lack of public awareness, despite being as common as diabetes and asthma in women.”
Throughout the month of March – Endometriosis Awareness Month – many dedicated organisations are advocating for understanding and support with special campaigns and events. An annual charity Primrose Ball was held in Leeds, on the 5th of March, and a ‘Worldwide Endomarch’ is scheduled for Saturday, the 19th of March.
While it remains imperative to promote research for a cure and more effective treatment, it is also essential that, as a community, we work towards dismantling the problems contributing to delays in diagnosis and care. Periods and period pain need to be talked about more often and more openly, unashamedly. Not only as a defiant act of empowerment, but as a self-preserving strategy against an attitude that is silently costing women their health.