We are involved in a wide range of research activities, aiming to ensure the views of those with endometriosis are always considered in research. This includes being a partner in clinical trials, helping with PPI (public and patient involvement) to ensure input from patients, reviewing patient materials and helping to recruit study participants. We input into study design, patient information materials and patient surveys and share research surveys.
Current Projects
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EUmetriosis - Focused on improving the lives of those affected by endometriosis in Europe. Overview: EUmetriosis is a research project focused on improving the lives of people affected by endometriosis in Europe and beyond. goal is to better understand the condition, find new ways to manage it, and make sure that people with lived experience are at the heart of everything we do. Using a multipronged approach, the EUmetriosis project aims to address critical unmet clinical needs around endometriosis. With involvement of patient organisations and patients with diverse real-life experiences across Europe, the project will explore how patients perceive self-management in the light of existing stigma and dismissal in clinical interactions. Find out more: Advancing How Endometriosis Is Understood, Diagnosed And Treated |
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ENDEAR - Research on Experiences of Endometriosis to Improve Healthcare: A New Study Between Endometriosis UK, Cysters and the Nuffield Department of Primary Care Health Sciences at the University of Oxford Overview: Endometriosis UK, Cysters and the Nuffield Department of Primary Care Health Sciences at the University of Oxford are working in partnership in a study about using experiences of endometriosis to improve healthcare. As part of an ongoing commitment to joined up working, the study brings together lived and learnt expertise to push forwards for better endometriosis healthcare and support for all. Endometriosis is finally getting more attention and focus in the media, policy, and beyond. Alongside campaigning and awareness-raising, research is an important way to bring about change for the better. Join us in finding out what matters to the people affected by endometriosis and learning from these experiences. Find out more: Experiences of endometriosis — Nuffield Department of Primary Care Health Sciences, University of Oxford |
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Endo1000 - UK-wide research project that will collect data and biological samples from 1000 individuals with endometriosis. The resulting resource will allow much needed research into the development of personalised care for people with endometriosis. Overview: The objective of the ENDO1000 project is to accelerate discovery and advance data-driven research into endometriosis diagnosis and treatment. Our innovative approach will gather rich data that sheds light on the everyday experiences of those living with this condition. By collecting information from participants over time, we’ll be able to spot patterns and make meaningful comparisons among individuals. The project's mission is to reduce diagnostic delay and develop personalised treatment approaches for individuals with endometriosis by studying data and biological samples collected from patients over an extended period of time. Find out more: Endo1000 | The UK-wide Endometriosis Research Project |
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RoADPain - The role of adolescent dysmenorrhea (period pain) as a risk factor for chronic pain. Overview: RoADPain is a research project which aims to understand the role of adolescent dysmenorrhea (period pain) as a risk factor for chronic pain. We will use what we learn about the long term risks of period pain, including how long it takes for experiencing period pain to increase your risk of chronic pain, to make sure period pain is taken seriously and to produce advice and guidance for those with period pain, health professionals, policy makers and educators. Find out more: For more information about the study and how to get involved please visit: RoADPain — Nuffield Department of Women's & Reproductive Health |
Completed Projects
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EndoVoices: Understanding the links between Endometriosis, mental health, and wellbeing through the voices of people with lived experience. Endometriosis can have a profound impact on mental health and wellbeing. The EndoVoices study is a co-produced project trying to better understand and spread awareness of the links between endometriosis, mental health and wellbeing from the perspective of those with lived experience, working in partnership with Endometriosis UK and the Co-production Collective at UCL. Find out more: For an overview of the project please watch the webinar we hosted here |
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REGAL - Recurrence of Endometriosis: Clinical and Cost-effectiveness of Gonatropin Releasing Hormone Analogues with Add-back HRT Versus Repeat Laparoscopic Surgery Regal is a clinical trial considering how best to treat those who have already had surgery for endometriosis but then at a later date experience recurrence of endometriosis pain. The trial compared further surgery versus hormonal treatment, and wass run by the University of Aberdeen. The randomised controlled trial compared long-term GnRH analogues (hormones which temporarily stop the ovaries producing oestrogen, ‘medical menopause’) with added HRT compared to keyhole surgery in women who experience recurrence of endometriosis pain after surgery, but who wish to preserve their fertility. Find out more: Recruitment for this study has completed however if you have been involved please fill out the survey. Further information can be found on the REGAL website. |
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ESPriT2 - Effectiveness of Laparoscopic Removal of Superficial Peritoneal Endometriosis for the Management of Chronic Pelvic Pain Run by the University of Edinburgh, ESPriT2 was a randomised controlled trial to determine whether laparoscopic removal of isolated superficial peritoneal endometriosis (SPE) by excision or ablation is of benefit for the management of chronic pelvic pain. Isolated SPE means that no deep endometriosis has been found on organs such as the bowel, only endometriosis on the peritoneal lining of the pelvic cavity. The study compared patients with SPE who have had endometriosis surgically removed via laparoscopy with patients who have had only a diagnostic laparoscopy i.e. no removal surgery took place. Participants will be randomly assigned to having diagnostic laparoscopy only or laparoscopy and removal, and will not know which procedure they had. Researchers will also be able to compare patient outcomes for different methods of laparoscopic removal of endometriosis, namely ablation and excision. Find out more: Further information can be found on ESPriT2 website |
