Two years ago, American writer, actress and director Lena Dunham had to pull out of the promo tour for the new season of her TV show, Girls, because of a “rough patch” with endometriosis. “My body (along with my amazing doctors) let me know, in no uncertain terms, that it's time to rest,” read her Instagram post on the subject. Since then Dunham (as well as other celebrities like Julianne Hough) have spoken out about endometriosis, the pain during sex it can cause and other debilitating symptoms (see below).
Dunham is one of the 176 million women worldwide reportedly affected by the chronic condition that can cause painful periods, as well as irregular and heavy bleeding, fatigue, diarrhea 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 back in February 2016, the Girls creator and star gave 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 (which starts today) 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
28-year-old Samantha Brimer’s endometriosis went undiagnosed for 15 years. Four months ago, her chronic pain became so debilitating that she had to take time off work as a communication officer, in Newcastle upon Tyne. The pain started under her rib and wasn’t recognized as a gynaecological problem, at first. “Then, it began to spread to my pelvis and, after doing my own research and knowing my own history, I approached [doctors] with the theory of endometriosis,” she explains. She was right, as a laparoscopy – a surgical procedure used in the diagnosis and treatment of endometriosis – recently confirmed.
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 penalized by the stigma surrounding menstruations and often downplay their symptoms. Even the ESHRE included “attitudes towards menstruation” and “normalization 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
Claire Barker, a 28-year-old PhD student at Cambridge University, started visiting her doctor about severe menstrual pain within a few months after having her first period, at 12. She was diagnosed with endometriosis at the age of 26, after about ten different GPs had reassured her that “some people just have it worse than others," and her cramps may have been excruciating, but were normal.
“[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.”
Andrew Horne, gynaecology professor, University of Edinburgh
Early diagnosis remains the most effective strategy, and Endometriosis UK is calling on the British Government to implement a national strategy to tackle the condition. The charity is running an online petition, asking to create specific clinical guidelines and quality care standards that would help doctors to reduce diagnosis time, raise awareness and improve the quality of care. But so far, they have only reached 24,000 signatures of the 100,000 needed to be considered for a debate in Parliament.
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.”
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.