Lancashire Teaching Hospitals has collaborated with Endometriosis UK on a new volunteer-led support group - the only platform of its type currently available nationwide - to help those with suspected or diagnosed endometriosis.
The Endometriosis UK Lancashire Support 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, while an endometriosis specialist nurse from the Trust will initially join in-person meetings, before offering support as required, including in online group meetings.
The first event took place on Wednesday 20 November at Charters Restaurant in Royal Preston Hospital, chaired by Jasmine Watson from Endometriosis UK, in collaboration with Lancashire Teaching Hospitals NHS Trust, with Emma Fleet, Clinical Nurse Specialist in Gynaecology and Endometriosis and Alison McCrudden, Patient Experience and Involvement Lead for LTHTR
The forum was well attended, with patients and members sharing their experiences and stories and advising what a support group would mean to them while dealing with their condition.
The next two events are scheduled for Tuesday 17 December, and Tuesday 21 January 2025.
Endometriosis is a 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.
Research by the charity Endometriosis UK released earlier this year found that the average wait for diagnosis of the disease in England is eight years and 10 months, a figure that has grown by 10 months since 2020.
The charity Endometriosis UK, which champions the rights of those with the disease, operates 55 support groups across the UK, all led by local volunteers, as well as online and telephone support.
Jasmine Watson, who launched the new Endometriosis UK Lancashire Support Group, is 23 and lives in Leyland. She said: “Throughout most of my life, it feels like I have either been on a waiting list or being made to feel like I’m overreacting. Despite first going to the doctors with endometriosis symptoms when I was 12 years old, in 2013. I was diagnosed with endometriosis in March 2023, 10 years later.
“My experiences with this really isolating and complex disease made me determined to create a new group here in Lancashire to support others like me in the area. I’m really grateful to both Endometriosis UK for the training and support they have given me in setting this up, and to the team at the Royal Preston Hospital for supporting what we’re doing. I can’t wait to start meeting more members of the local endometriosis community.”
Emma Fleet, Clinical Nurse Specialist in Gynaecology and Endometriosis with Lancashire Teaching Hospitals, added: “It’s a privilege to be supporting such a valuable group. This is a positive step forward in terms of being able to work collaboratively with Endometriosis UK within our Trust setting.
To have a group that our patients and wider community can easily access is wonderful.
“Endometriosis can be very isolating, and we hope that this group will be a way of providing access to additional support in a safe, welcoming environment. Often having someone to listen to, and to feel you are being heard, makes all the difference.”
Emma Cox, Chief Executive of Endometriosis UK, said: “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 the many other challenges which endometriosis can throw at them.
“We want to thank Jasmine 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 Lancashire.”
Anyone interested in joining the new group should request to join the group on Facebook, and/or email lancashiregroup@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.
