A new volunteer-led support group has been created in west Wales for the estimated tens of thousands of people in the area with suspected or diagnosed endometriosis.
It launches midway through the current Endometriosis Action Month, shortly after new figures from the charity Endometriosis UK revealed that it now takes an average of nearly 10 years to get diagnosed with the disease in Wales – the highest figure in the UK.
The Endometriosis UK West Wales Group, led by a volunteer living in Tenby, will offer peer-to-peer support, and a chance to share stories, information and advice, both online and at in-person meet-ups and events.
Physical and mental health
Endometriosis is a gynaecological disease which impacts the physical and mental health of 1.5 million, or one in 10 women and those assigned female at birth in the UK.
The main symptoms of the disease include chronic pelvic pain, painful periods, painful bowel movements, pain during or after sex, and fatigue.
Jennifer Hughes-Cooke, an admin assistant from Tenby, who has set up the Endometriosis UK West Wales group, said: “I first went to my GP complaining of excruciating periods at 14.
"At 17, I was referred to a gynaecology specialist, but was sent away being told I was ‘just one of those unfortunate women’.
Long wait for diagnosis
“It wasn’t until I was aged 20, not long after a very difficult - but fortunately successful - pregnancy, that any doctor even mentioned the word ‘endometriosis’. I was finally formally diagnosed, and had adhesions removed from my ovaries, aged 29, in 2019.
“During my long wait for diagnosis, I followed Endometriosis UK on social media, and while it was helpful to know there were others out there in a similar position, I wished there was more local support, so I’m grateful to the charity for helping me create this group.
“I think it’s so important to be able to talk to people who know what you’re going through, whether it’s just to listen and empathise, or to provide practical tips and help you navigate referrals and appointments and everything else.
"We're here for you"
“While I am based in Tenby and we will do some in-person events, I know how important it is to still be able to access things like this even if you live in a more rural area, so the group will be active online. Whether you’re in Pembrokeshire, Ceredigion or Carmarthenshire, we’re here for you.”
The west Wales group is one of three just launched in Wales.
Finding out more
Heatherjane Dangerfield, Welsh development co-ordinator, said: “The theme of Endometriosis Action Month this year is ‘could it be endometriosis?’ and we’re encouraging healthcare professionals, as well as those experiencing symptoms, and their friends, family and colleagues, to find out more about the disease.
“Currently, it takes an average of nine years and 11 months in Wales to get diagnosed with endometriosis, the highest figure in the UK, and an increase of 11 months since the last survey in 2020.
“Our amazing volunteers across Wales, including Jennifer, provide a unique support system for those going through the diagnosis process, and indeed at any stage of their endometriosis journey.
"We’re really grateful to Jennifer for her hard work, and delighted to launch these new groups.”
Anyone interested in joining the new West Wales group should visit facebook.com/groups/651010666941243 or write to Westwales@endometriosis-uk.org.
Find out more about Endometriosis UK’s other support groups and channels across the UK at endometriosis-uk.org/support.
An in-depth guide to endometriosis can be seen here
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