A new support group led by a volunteer living in Tenby has been created in West Wales, to support the estimated tens of thousands in the area with suspected or diagnosed endometriosis.

It launches midway through Endometriosis Action Month, after new figures from the charity 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 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.

Endometriosis is a gynaecological disease impacting physical and mental health of 1 in 10 women and those assigned female at birth in the UK - that’s more than 1.5 million who desperately need support with this chronic condition.

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 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’.

“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.

“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.”

Anyone interested in joining the group can visit facebook.com/groups/651010666941243 or write to [email protected]