Women With Endometriosis Are Still Being Failed – It's Time The Government Took Bold Action

We need to be unapologetic about menstrual wellbeing and raise our voices to get a fair deal for the millions of women in the UK suffering with menstrual-related conditions
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As Endometriosis Awareness Month comes to an end, we want to see the Government take bold action on women’s menstrual health. We need to be unapologetic about menstrual wellbeing and raise our voices to get a fair deal for the millions of women in the UK suffering with menstrual-related conditions, including 1.5 million with endometriosis.

For too long women with menstrual conditions like endometriosis, adenomyosis, fibroids, heavy menstrual bleeding, PCOS (polycystic ovary syndrome), and PMDD (premenstrual dysphoric disorder) have been silenced. Silenced into not talking about symptoms because you’re told you’re making a fuss over nothing or have a low pain threshold. Silenced into bleeding through clothes because employers are frustrated at the number of toilet breaks being taken. Silenced by sick leave being put down as ‘tummy ache’ because an employer doesn’t understand endometriosis. These are just some of the stories I hear all too often; we need to work to ensure menstrual conditions like endometriosis are no longer invisible.

We firstly need to break the taboos around talking about menstruation and gynaecological issues. Empowering through education will be key to this. Earlier this month, following campaigning including a petition with over 100,000 signatures, the Government agreed to include menstrual wellbeing in the new curriculum for schools in England from 2020. This is a critical so all children learn the correct language around menstruation – and overcome the embarrassment of taking about it. And girls and young women need to be equipped with the knowledge and confidence to know when what they are experiencing is not right and to seek help. I hope the new curriculum will be a big step in ensuring future generations are better supported. An understanding of what is and isn’t normal when it comes to our menstrual cycle is the first step to empowering women from a young age to seek help if it’s needed. Without learning about the menstrual cycle at school in a safe and controlled environment, menstrual conditions will continue to go unrecognised, marginalised and underdiagnosed. Since the announcement, we’ve met with Schools Minister Nick Gibb, and despite the predictable backlash the Government received about the new overall Relationship & Sex Education curriculum, the Minister remains committed to working with us to ensure the new guidance is delivered.

We secondly need to work with healthcare practitioners to ensure women with suspected endometriosis are given the right care at the right time. It takes on average a shocking 7.5 years to get diagnosed with endometriosis. This has to change. During those years of limbo, women may be suffering chronic – sometimes debilitating – pain, left in financial difficulty, and struggling mentally. The earlier the diagnosis, the sooner those with the disease can access treatment. Without a diagnosis, not only may the disease progress, but women cannot put a name to the symptoms impacting on their education, employment, relationships and mental health. We’re delighted to be working with the Royal College of GPs on developing a Menstrual Wellbeing Toolkit for GPs, to help improve diagnosis times. As part of this toolkit, a new education e-learning unit on endometriosis covers the symptoms, signs and management of endometriosis, helping GPs support an earlier diagnosis. Symptoms of endometriosis include chronic pelvic pain, bladder and bowel problems, painful sex, fatigue and infertility, and each women experiences different symptoms depending on where the endometriosis is growing. The symptoms overlap with other conditions, and the only way to definitively diagnose endometriosis is with surgery.

As the symptoms are quite diverse a woman may not realise the symptoms are linked and think of them as ‘intermittent’ not realising they may be cyclical (linked to the menstrual cycle). Given periods, sex and bowel movements can be considered taboo or embarrassing not everyone finds them easy to talk about either. We clearly still have a long way to go in ensuring women seek the help they need, as well as GPs recognising this pain too.

Thirdly, we want to see employers do more to support women with endometriosis, and ensure they are not penalised for having the disease. Menstrual conditions can have a huge impact on a woman’s work – from needing to access a toilet due to heavy menstrual bleeding to employers not understanding the symptoms or need to take sick leave after an operation, we need to do more to ensure women get a better deal.

To get more involved with Endometriosis UK, and for advice and support, visit our website: www.endometriosis-uk.org

To raise awareness of endometriosis, we are delighted to have partnered with life savings company Standard Life and internationally-renowned photographer Rankin on a new exhibition – Beyond the Invisible – which showcases a series of intimate photographs and videos of people who have experience of the condition. For more information go to: https://www.endometriosis-uk.org/news/beyond-invisible-standard-life-exhibition-37571