Support groups for Endometriosis in East Sussex
Endometriosis is a gynaecological disease which impacts on 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.
The Endometriosis UK East Sussex Group will offer peer-to-peer support, and chance to share stories, information and advice, both online and at in-person meet-ups and events. Its first event is due to take place in mid-December 2023.
The charity Endometriosis UK, which champions the rights of those with the disease, operates more than 50 support groups across the UK, all led by local volunteers, as well as online and telephone support.
These include existing groups in West Kent and West Sussex, which together have more than 600 members, meaning the new group may provide a more convenient option to those living and working in East Sussex.
Lydia Eccleston, a Head of Marketing from Brighton who has set up the Endometriosis UK East Sussex Group says:
“It took 11 years of appointments, delays and frustration before I was finally diagnosed formally with endometriosis. An Endometriosis UK support group back home in Staffordshire was invaluable both for navigating NHS systems and emotional support during that time.
“When I moved to Brighton nearly two years ago, for an exciting new job, I was almost back to square one, faced with new NHS waiting lists, consultants and systems as I tried to get the care I need. It made me determined to create a new group here in East Sussex to support others like me in the area. I’m grateful to Endometriosis UK for the training and support they have given me in setting this up, and can’t wait to start meeting more members of the local endometriosis community.”
Lydia has recently been nominated for a Brighton Girl Award for her endometriosis campaigning work.
Anyone interested in joining the new group should request to join the ‘Endometriosis UK East Sussex Group’ Facebook page or email EastSussexGroup@endometriosis-uk.org. Endometriosis UK’s support groups welcome anyone impacted by the disease, including the friends and loved ones who support someone with endometriosis and those who do not yet have a formal diagnosis.
Find out more about other support groups and channels from Endometriosis UK here.
Initially, the support group’s in-person events will take place at the central Brighton offices of Lydia’s employer Arke Agency, which is signed up to Endometriosis UK’s Endometriosis Friendly Employer. Future events may be held in other locations, and the group’s Facebook presence will ensure it remains accessible.
Emma Cox, Chief Executive of Endometriosis UK, says:
“For various reasons including taboos around menstrual health and a lack of research into endometriosis, it currently takes an average of eight years in the UK to get diagnosed. Our volunteers provide a unique support system for those battling for a diagnosis, as well as those facing them many other challenges which endometriosis can throw at them.
“We want to thank Lydia for all her hard work volunteering to set up this group, which we hope will have a hugely positive impact on many of those with endometriosis across East Sussex.”