Research
One of the aims of Endometriosis South Coast is to provide up to date and relevant research to those that want to access it. There will be regular updates here of what we think may be of interest. Jodie’s work will also be published here when it is ready.
Endometriosis South Coast with Portsmouth City Council, are asking people about their experiences of painful periods at school.
Complete the survey https://forms.office.com/e/SRNdeJZcpP
If you have any questions, contact us: admin@endometriosissouthcoast.com
Hi everyone! I’m Beth, a trainee clinical psychologist at Oxford Uni. I am currently researching the impact of illness invalidation in Endometriosis.
We know that many women with Endometriosis, the journey to receiving a diagnosis and/or accessing support to manage their condition can be long and frustrating, often involving many interactions with healthcare professionals along the way.
Within interactions with healthcare professionals and others, many women with Endometriosis may experience their symptoms being minimised, dismissed, or not taken seriously (what we refer to as illness invalidation).
We are interested in understanding the impact of experiencing illness invalidation on quality of life and wellbeing.
We hope that this research will help improve awareness and support for those living with the condition, and we aim to share our research findings widely – with the public, medical professionals and research community.
We are looking for participants who:
Are aged 18 or over
Live in the UK
Have a diagnosis of Endometriosis
What will this involve?
Easy to complete online survey
Your answers will be completely anonymised and we will not ask for your name or contact details
Link to participate:https://psychiatryoxford.qualtrics.com/jfe/form/SV_5A1PXcUZv1yYHCS
Thank you – your participation is greatly appreciated!
Exciting news—from our friends at George Mason University College of Public Health and EndoBlack, Inc! Please spread the word!
Do you know that extremely painful and debilitating cramps are not a normal part of life?
No one should miss out on school or time with family and friends because of extremely painful cramps.
Unfortunately, 1 in 10 women and girls have endometriosis, which is when cells similar to the uterine lining exist outside of the uterus. Symptoms such as extreme pain can cause girls and young women to miss school or time with family or friends.
Symptoms usually start in adolescence, but because of stigma and shame, most girls don’t receive a diagnosis for 10 years. That time is even longer in communities of colors
Our friends at Endo Black Inc. and George Mason University College of Public Health recently launched an exciting project to help young women and girls with symptoms of endometriosis. Please support by either participating or sharing.
The project, SurrEndo, is an app-based game designed to break down stigma and foster support for Black and Latina young women and girls, ages 14-25, dealing with endometriosis. Plus, it’s a chance for players to help us learn more about how gaming can help people with endometriosis—all while having fun!
If you’d like to learn more about how to become involved, please click on the link below:
https://chhs.co1.qualtrics.com/jfe/form/SV_cAwGbBaYyR3fXAG
You can also email the research team, led by Dr. Jhumka Gupta at
Annabelle Basson from Portsmouth University is asking people with Endometriosis to get involved in her study that explores the acceptability of psychological interventions as people with endo.
Contact her annabelle.basson@port.ac.uk
Ines Brzychcyk from Portsmouth University is asking people with Endometriosis to get involved in her study that explores self-management strategies amongst people with endometriosis.
Contact her Ines.Brzychcyk@myport.ac.uk
Rachel is a qualitative researcher at the University of Oxford, involved in a new study about UK patients’ experiences of endometriosis with Dr Abi McNiven. We are interviewing patients about their experiences of endometriosis and of healthcare services for endometriosis in the UK. We are aiming to interview a wide range of people with diverse experiences, to make a new information and support resource on the Health Experience Insights (HEXI) website at www.hexi.ox.ac.uk about experiences of endometriosis. We will also make a short film to use at co-design workshops with patients, healthcare practitioners, and policy-makers, to work out what other resources to develop from the study.
An overview of the study is available here: https://www.phc.ox.ac.uk/research/groups-and-centres/health_experiences/Experiences-of-endometriosis
Megan Jones is researching Living with Endometriosis.
Get involved here:
https://derby.qualtrics.com/jfe/form/SV_5nAzHwOnQvPRQai
Jodie is currently working on her PhD looking at Endometriosis care and how it differs in different sample groups.If you would like to take part click on the link below.
