The Actions | Endometriosis UK

The Actions

For a number of years, March has been Endometriosis Awareness Month. While this has been a successful initiative, allowing us to reach new audiences and spread knowledge about the challenges of living with endometriosis, we know that awareness only goes so far. 

What those with endometriosis need and deserve is tangible action and positive changes which improve their wellbeing. That’s why we’ve decided that March 2022 will be Endometriosis Action Month, and we're asking everyone to get involved in one or more of these actions. We've chosen eight, reflecting that it takes an average of eight years to get a diagnosis of endometriosis in the UK - a figure which hasn’t changed in a decade.

Action 1 - Ask your MP to improve endometriosis diagnosis and care

Will you write to your MP to ask them to back our campaign to improve endometriosis care by updating the NICE Guideline on endometriosis? The Guideline, NG73, hasn't been updated since it was published in 2017 and has some significant gaps in it - including pain management, endometriosis outside the pelvic area and mental health support. Click here to find out more. 

 

If you live in Scotland, Wales or Northern Ireland, you can also write to your Scottish Parliament, Welsh Senedd and Northern Ireland Assembly Members to ask them to "End the Silence" on endometriosis. Click here to write to your MSP/MS/MLA. 

Action 2 – End the pain: don’t ignore it

76% of women, rising to 89% of those aged 16-24, said they would put off going to the doctor if they were experiencing painful periods which were interfering with their day-to-day activities.

Periods can be painful. But if the period or pelvic pain you are experiencing is affecting your daily activities and quality of life, then it’s best to see a doctor. We know that the NHS is busy, especially during the Covid-19 pandemic, but if your pelvic period pains are stopping you doing things and getting in the way of your life then we recommend you seek medical advice.

If your pelvic pain or period pains are stopping you doing things and getting in the way of life, you have a right to medical advice. Read our guidance on visiting your doctor – and read more from our new polling here.

Action 3 - End the pain: provide support and treatment for all

To reduce diagnosis time and increase access to timely treatment, there has to be access to well trained healthcare practitioners and the capacity in hospitals to undertake treatment. The NHS needs to plan to get this right, and end the postcode lottery for endometriosis care.

While NICE’s Endometriosis: diagnosis and management (NG73) guideline sets a baseline for endometriosis care that’s been adopted across the UK, it has not been implemented fully. It takes on average 8 years to get a diagnosis of endometriosis in the UK, a figure unchanged in a decade, and there is a postcode lottery for accessing specialist care that needs to end.

We call on Governments across the UK to:

  • Ensure implementation of the NICE Guideline on endometriosis diagnosis and management including ensuring access to endometriosis specialist centres for all those who need such care
  • Commit to reducing diagnosis times to under 4 years by 2025 and under 1 year by 2030; this will require investment in diagnostic capacity in gynaecology departments
  • Measure the demand for endometriosis services and ensure appropriate resources are made available to deliver care

Implementation can be aided by undertaking an audit to identify gaps and barriers to implementation.

We recognise and thank the Scottish Government for having taken steps to address the above.1 2

(1) Women's Health Plan Scotland

(2) Report on Better Endometriosis Care in Scotland

Action 4 - End the pain: healthcare practitioner awareness

We call on healthcare practitioners to take the opportunity in Action Month to learn more about endometriosis, and share relevant resources with their peers and colleagues.

Healthcare Practitioners of all kinds are likely to see patients with endometriosis – GPs, doctors in hospitals, nurses, A&E staff school nurses – it’s not just specialists.  We call on all healthcare practitioners to take the opportunity this month to learn more about endometriosis, and to share relevant resources with peers and colleagues. We are asking the Royal Colleges to raise awareness, promote educational resources, and commit to ensure their training programmes include endometriosis and menstrual health conditions.

If you are a healthcare practitioner, please learn more about endometriosis during March. Endometriosis experts, please share resources with colleagues. For those in primary care, a good starting point is the RCGPs Menstrual Wellbeing Toolkit and free 30-minute e-learning module.

Action 5 - End the silence: get the facts and spread the word

Nearly half of the population – including 69% of men and 25% of women – don’t know what endometriosis is. The more people who know about endometriosis and how it affects those with the disease, the better. What better time to spread the word than during Endometriosis Action Month?

Whether you don’t know anything about endometriosis, you want to build up your knowledge, or want a simple explanation to help someone else understand the disease, Endometriosis UK’s website is a good place to start.

Public awareness and understanding of endometriosis has increased in recent years through the dedication of thousands of Endometriosis UK’s supporters and campaigners, but there’s still a long way to go. Just 28% of people say they know someone with endometriosis, but with the disease affecting 1.5 million in the UK, the likelihood is that everyone knows someone, but haven’t realised it. It’s time to spread the word among relatives, friends, colleagues and anyone else you think will listen!

Go to our website or use our social media toolkit.

Action 6 - End the silence: become an Endometriosis Friendly Employer

Ask your employer – or your school or college – to become an Endometriosis Friendly Employer, to provide support for staff with the disease.

The Endometriosis Friendly Employer scheme is a great way for employers confirm their commitment to developing a work environment and culture that enable employees with endometriosis to thrive at work. Through the scheme, Endometriosis UK provides guidance for employers on how to support employees with endometriosis and menstrual health conditions, and work towards improving the work environment in three key areas: Leadership and management support; tackling stigma and changing culture; and communications.

Find out more about the scheme here.

Action 7 - End the silence: take on the 1in10 Challenge

To help end the silence around endometriosis and to support the 1in10 with the disease, take on a 1in10 Challenge this March. Walk, run, bake, host a quiz or build your own challenge - take part your way! All funds raised will enable Endometriosis UK to continue their work, providing a voice and vital support and information for the 1.5 million living with the disease across the UK.

Full information can be found here: 1in10 Challenge.

Action 8 - End the pain: push for research

We want the National Institute for Health Research (NIHR) to put an end to the long-standing lack of research on endometriosis.

NIHR is the largest funder of health and care research in the UK. Because of that long-standing shortfall of endometriosis research, we don’t know what causes the disease; there is no simple diagnostic test and diagnosis can take many years; there is no cure; and treatment options are limited. In 2018, only 2.1% of publicly funded research in the UK went on reproductive and menstrual health, down from 4.5% in 2014.

Since it was set up in 2006, NIHR has funded a total of 8,286 project – only 11 of these have been on endometriosis.

Tell the NIHR that you want to see more funded research into endometriosis. Click here to find out more about how you can do this.

Don’t suffer in silence

If you need support Endometriosis UK is here for you.

Get Support