Endometriosis: National World's open letter to health ministers urges them to end 'cycle of suffering'

Dear Wes Streeting, Mike Nesbitt, Jenni Minto and Jeremy Miles,

If you experienced your first symptom of endometriosis today, you wouldn’t receive a diagnosis until 2034. For a country that prides itself on its unique and special healthcare provision this is the stark reality for those living with the systemic inflammatory condition.

It’s an uphill battle, from getting a diagnosis to navigating the symptoms and even accessing healthcare. And as health ministers, you shouldn’t be standing by watching so many paying the price for a condition that has no cure.

As a trusted publisher representing communities across the UK, National World launched the Endo the Battle campaign to amplify the voices of those living with endometriosis. Those individuals have bravely shared their stories of life with this excruciating condition - and what we have heard is enough to shock anyone.

Over 400 people made their voices heard, right across the UK, and it is clear that they are being failed by successive Governments. The recent Women’s Health Strategy setting out a ten year plan to improve outcomes for women and girls is quite frankly not worth the paper it was written on - these voices show today that medical misogyny continues to be one of the biggest barriers.

These brave voices have told us stories of lengthy waiting lists, a normalisation of symptoms and a lack of endometriosis knowledge - often living with symptoms for almost a decade without answers. They told us of debilitating pain, disease progression, fertility struggles and a devastating impact on quality of life.

Each region of the UK faces unique challenges, but the key theme we found is that no matter where you live, those with endometriosis are left to make challenging financial decisions out of desperation to access vital healthcare - even some travelling thousands of miles to a different country just to seek the medical answers and solutions they can’t access closer to home.

Is it too much to ask that everyone with endometriosis should be able to go to a doctor, feel heard and have faith that they will be taken seriously and treated with compassion?

We put it to you that this is not happening. In fact, the diagnosis delays have only gone up - increasing by 10 months. In England and Scotland the average diagnosis delay is eight years and 10 months, in Northern Ireland this jumps to nine years and five months, whilst in Wales it’s a staggering nine years and 11 months.

In February, the Office for National Statistics found that those with the condition experienced a significant decrease in earnings, with patients so desperate they feel they have no choice but to seek and fund private care - adding additional stress to an already challenging financial situation.

We are calling on you to finally start to change the tide - you have the responsibility to do this for so many who are suffering with this crippling condition.

We strongly urge you to:

• Tackle the current backlog for gynaecology waiting lists in every region of the UK and to bring down the endometriosis diagnostic delays, as well as diagnosis delays in underrepresented communities.
• Upskil frontline medical professionals so they can recognise endometriosis and make relevant referrals as soon as possible to help avoid diagnosis delays, as well as other healthcare professionals so that symptoms can be recognised at every step of the healthcare pathway.
• Provide endometriosis education in schools, so that if a child or young person experiences symptoms they are armed with the knowledge to know how to ask for help.
• Enable everyone in the UK to be able to access an endometriosis specialist centre, where they can access an endometriosis specialist and a multidisciplinary approach to their care.
• Commit to care for extra pelvic endometriosis - those with thoracic endometriosis often face challenges getting a diagnosis or seeking healthcare.
• Make a commitment to tackle barriers such as medical misogyny and misinformation in endometriosis healthcare.

The impact of not doing the above paints a bleak future. So many are already at a disadvantage - and we need to close this gap now.

The current situation in the UK is leaving endometriosis patients with repeated barriers to accessing care and accurate information. If nothing changes, the cycle of suffering, endured by so many, is set to continue.

The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.

If you have been affected by the content of this open letter or suspect you may have endometriosis you can find out more at the Menstrual Health Project.