Volunteer launches new support group for the ‘1 in 10’ in Swansea with endometriosis 

It launches midway through Endometriosis Action Month (March 2024), 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 Swansea 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 which impacts the 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 and information to help them understand 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. 

Financial services worker Danielle Woodberry, who has set up the Endometriosis UK Swansea Group, says: “For more than a decade I had symptoms including pain and fatigue, but GPs were never able to help. It was only after coming off the pill in 2022 that they got worse and I realised that I really needed answers. This process of trying to get a diagnosis included being sent to A&E at one point, where they did several tests but failed to get to the bottom of it. I then saw a gynaecologist privately and was able to have surgery in 2023, which removed my endometriosis and has given me a new lease of life. 

“Throughout this process, I craved finding someone who had been through the same journey – my family and friends were there to support me which was great, but of course they didn’t really get it. I’m really hoping that this new group will make things that bit easier for those in a similar position, and I’m grateful that Endometriosis UK has supported me to get it up and running.” 

Endometriosis UK, which champions the rights of those with the disease, is also today launching the Endometriosis UK West Wales Group and Endometriosis UK Wrexham Group. 

These are in addition to pre-existing Welsh groups in Cardiff and Mid Wales, which together have close to 1,500 members, and around 50 other groups elsewhere in the UK, all led by trained local volunteers who receive ongoing support from the charity. Endometriosis UK also offers online and telephone support services. 

Heatherjane Dangerfield, Welsh Development Co-ordinator, says: “The theme of Endometriosis Action Month this year is ‘could it be endometriosis?’ – 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 Danielle, 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 Danielle for her hard work, and delighted to launch these new groups.” 

Endometriosis UK research earlier in March revealed that Wales is the UK nation with the longest diagnosis times for endometriosis, at 9 year and 11 months, versus a UK-wide average of 8 years and 10 months. 

Anyone interested in joining the new group should visit https://www.facebook.com/groups/992620768495966 or write to Swanseagroup@endometrosis-uk.org.