A support group for those affected by endometriosis has moved a step closer after De Montfort University Leicester (DMU) raised awareness of the rarely talked about condition.
The workshop, which was held as part of Endometriosis Awareness Week, saw more than 50 students and staff wanting to find out more about the ‘hidden illness.’
Guest speaker Cathy Dean, Endometriosis Clinical Nurse Specialist at the Portland Hospital, London, addressed the signs, symptoms, diagnosis and treatment of endometriosis.
This highlighted the need for people to come together to meet and talk with others who share and understand their situation.
The charity Endometriosis UK had been planning to set up the city’s first support group and now have the details of people who would benefit from much-needed information and friendship.
Cathy explained that endometriosis is a chronic gynaecological condition where cells similar to the ones lining the womb grow elsewhere in the body. These cells then react to the menstrual cycle and bleed each month, which can cause inflammation, pain and the formation of scar tissue.
She said: “One in ten women will be affected by endometriosis, but not every woman will be affected in the same way.
“It’s such a variable condition; some women are in excruciating pain, some women have mild symptoms that they think are normal, while others don’t have any symptoms at all.
“It’s not even a case of the more severe the endometriosis, the more severe the symptoms. This is partly why it can be so difficult to diagnose.”
Cathy said little was known about the cause of the condition and it took an average of 7.5 years for women to be diagnosed. She explained that keeping a pain and symptoms diary could help to diagnose symptoms.
She said: “The more we talk about periods, the more we will talk about what is normal and what is not. This will help to get the message out there and more women will be helped.”
The awareness event was organised by the Centre for Reproduction Research at DMU in conjunction with the Faculty of Health and Life Sciences Work and Wellbeing Group and People and Organisational Development.
Symptoms for women of reproductive age include chronic pelvic pain, heavy and painful periods, painful bowel movements, pain when urinating or during or after sex, fatigue and problems with fertility.
The surgical removal of endometriosis can result in the reduction of pain and improves quality of life. Other treatments include analgesics and hormonal treatments.
The Centre for Reproduction Research at DMU leads a programme of research into the condition to improve care and support. DMU has also co-produced online resources and an awareness video with Endometriosis UK.
Caroline Law, Research Fellow at DMU’s Centre for Reproduction Research, said: “Endometriosis can have a huge impact in lots of different ways on people’s lives.
“It can affect people’s education, working lives and social lives, and it can affect relationships, sex and intimacy. It can also lead to fertility issues and difficulty in getting pregnant.”
Caroline explained that they hosted the event to enhance knowledge and understanding of the condition, how it can affect people and how it can be managed.
She added: “Endometriosis affects a lot of people, but people just don’t know enough about the condition, there is a real lack of awareness. We need to talk to each other as the more we talk, the greater public awareness and understanding there will be.”
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Sunaina Nechel-Maher from Endometriosis UK will launch Leicester’s new support group. She said the DMU event had highlighted the need for monthly meetings so that people affected can meet each other locally.
Sunaina said: “It will give those affected by endometriosis the chance to come together and help each other improve their quality of life. It will not just be for those with the condition, but also their partners, family and friends.
“There is currently not a support group in Leicester, but this event proved to us there is a real need. We hope the new group will become a big source of support for those who need it most.”
For more information on the Leicester support group, email LeicesterGroup@endometriosos-uk.org or visit the Endometriosis UK website.
Posted on Friday 9 March 2018