Sioned Williams MS writes about the pain caused by Endometriosis.
This article was originally published in the Western Mail on Monday 11 March 2024.
Can you name a condition that affects 1 in 10 women in the UK, can cause permanent damage to internal organs, and yet diagnosis can take nearly a decade on average?
You wouldn’t be alone if you don’t immediately think of endometriosis. It’s not a name everyone has heard of, or fully understands, and that’s why March has been designated as Endometriosis Action Month, to help raise awareness.
With more awareness, the hope is that women won’t have to wait so long for diagnosis.
Because they’re not waiting in peace. No. Endometriosis can make itself known to the sufferer with severe and sometimes debilitating pain.
A charity, Endometriosis UK has recently conducted a survey on over 4,000 people who have received a diagnosis of endometriosis and it shows that almost half of all respondents had visited their GP 10 or more times with symptoms prior to their diagnosis and a quarter had ended up in A&E three times or more.
Their report included 200 people from Wales, where the waiting time for diagnosis is 9 years 11 months - the longest diagnosis time across the UK.
For too many sufferers, a decade waiting for a diagnosis can feel like a lifetime, but imagine if you’re told you’re making the pain up? A shocking 78% - that’s nearly 4 in 5 people who went on to receive a diagnosis of endometriosis – had experienced one or more doctor telling them they were making a ‘fuss about nothing.’
I have taken part in panel discussions and events to raise awareness about endometriosis and have heard shocking testimony directly from women who feel more must be done to research the condition so diagnosis, treatment and support can be improved.
Michelle from Cardiff told Endometriosis UK:
“Endometriosis has had a major impact on my life. Diagnosed in my mid 20s, after years of suffering. Now in my late 40s, I have been left unable to have children. The mental and physical trauma of being ignored by healthcare professionals leaves you feeling alone, doubting your pain. I have missed out on many aspects of my personal and work life, and also being a mum. My advice to other would be keep pushing for answers, write a diary and allow those close to you to support you.”
If you don’t know that something exists, how can you identify it?
There’s some good news – a new digitised symptom reporting tool on endometriosis has been launched on an NHS Wales-approved website, Endometriosis Cymru, which aims to reduce diagnostic delays by helping patients track symptoms and improve the information they can share with doctors.
In the meantime, Welsh Government should prioritise endometriosis in their long awaited women’s health plan, and put steps in place to lower diagnosis wait times.