If you live in Wales and have been diagnosed with endometriosis, or have symptoms you suspect may be endometriosis, Endometriosis Cymru can help.
The Endometriosis Cymru website provides a wealth of information and resources to help you manage symptoms and navigate living with the condition. It also provides useful tips and tools for parents, carers, educators, and employers. The information, resources, and tools on the website can be accessed by anyone – you don’t have to live in Wales to use them!
Endometriosis Cymru is a collaborative project, initiated in 2019 by the Welsh Government and NHS Wales with Cardiff University and Fair Treatment for the Women of Wales (FTWW), supported by Wales-based creative web design agency, Proper Design. They believe that by providing reliable and accessible information, they can empower individuals to better manage their condition and improve their quality of life.
The Endometriosis Cymru website is fully bilingual in Welsh and English and provides information on the symptoms of endometriosis and the process for diagnosis in Wales with additional information on the ongoing management of the disease, tools and resources, and a wealth of guidance and links to available support.
In 2023, the project was awarded funding from Wales' Minister for Social Justice to develop the site further, enabling the creation of more resources and improved accessibility with help from Learning Disability Wales (LDW). These new developments include:
● Expansion of the ‘living with’ section to include practical advice around work, education, and advocacy.
● ‘Easy read’ versions of the most important and relevant information following consultation with LDW, to ensure the site is as accessible as possible for those with diverse impairments and needs.
● Information on how to access help in Wales, including updates about the specialist endometriosis nurses.
The collaborative team have also developed a new online symptom reporting tool to make discussions about symptoms with your doctor easier. The Endometriosis Cymru Symptom Reporting Tool aims to help reduce the time that people are waiting to receive a diagnosis for symptoms that they suspect might be endometriosis.
This user-friendly tool is fully bilingual and allows users to track key symptoms of endometriosis over multiple months or menstrual cycles to prepare for a conversation with their doctor. It does not ask about every possible endometriosis symptom but looks at the small number of symptoms that often differentiate endometriosis from other conditions.
The tool was uniquely co-designed with patients and healthcare professionals to help you track both symptoms and treatments, and easily communicate them to your doctor. This contrasts with other trackers which are often designed to collect information about many symptoms.
Support and funding for the tool was provided by Welsh Government, NHS Wales, and the Medical Research Council (MRC).
Endometriosis UK supports Endometriosis Cymru in inviting people in Wales living with suspected or confirmed endometriosis, their friends and family, healthcare professionals, and advocates to explore the website and join the movement towards greater awareness and support for those affected by this challenging disease.
