We spoke to Dr Lucy Whitaker, a senior clinical research fellow about her research into endometriosis and community involvement. What is your background?I’m a clinical academic which means I'm a doctor - I look after people predominantly with endometriosis and pelvic pain, and I also have an interest in menopause - but the majority of my job is based in clinical research. I work in clinical trials to try and improve the treatments that we give to patients who are affected by endometriosis.What is your research focus for endometriosis?The main treatments for endometriosis at the moment are that we can either remove the disease with surgery to cut it out or we can treat it with hormones. And the problem is with both those types of interventions is that, for a lot of people, they either don’t work, or they have really unacceptable side effects.I think particularly for hormonal treatments, we know that they can have a lot of side effects, or aren’t working particularly effectively, or they’re contraceptive so if anyone is seeking to fall pregnant, they’re not going to be an appropriate treatment. There’s this real unmet need for effective treatments with a small side effect profile, but particularly those that are non-hormonal. That’s why we're really excited by three of the trials that we've got within our EXPPECT team which are all looking at non-hormonal treatments for endometriosis. How does your team engage with the endometriosis community? We’re incredibly fortunate that the endometriosis community are hugely enthused and helpful when we're trying to design our research and I think partly that's because they've often had such a difficult time to date. So many of them have got really poor control of their symptoms, and they're desperate for things that could make those symptoms better.We work with a lot of patient support organizations such as Endometriosis UK, Endometriosis South of Scotland, EndoBonds and Endo Warriors West Lothian. They've given us really helpful insights into our study design. There was also a big national program called the James Land Alliance which involved over 850 people with lived experiences of endometriosis to provide a top ten list of key research priorities. The endometriosis community is really helpful to us for setting the research agenda and priorities, but also the nitty-gritty of how we design our trials to make sure that they are acceptable to patients and answer the questions that they want answered.What do you want to communicate to the public?I think it’s really important to consider how we convey our results after a study has ended. Through all our studies we have patient panels who help further inform the design and they really help us when we get to the end of the study in how we then communicate the message about what we found to clinicians, researchers, and most importantly the patients and their families and friends.There’s a lot of stigma around women’s health, chronic pain and, in particular, gynaecological conditions. We’re not good at talking about periods, be it volume of bleeding or pain. I think that’s one of the real issues. People don’t even know what endometriosis is. I also think, historically, we were fixated on the main symptoms of period pain, pelvic pain and infertility. There was less recognition of the impact on people's sexual function, bowel or bladder symptoms, and fatigue. We're now much more aware that this is a whole-body inflammatory condition.A key message is that there’s real hope for the future. If we look at the example of breast cancer, 40 years ago most people didn’t survive and the treatments were really debilitating. However, as scientists have unpicked the disease, they’ve understood the genetics of it, along with the inflammation and natural history. It’s completely revolutionised the treatment and these are now much less debilitating, much more targeted, and outcomes have improved astronomically. Now 70% more people will survive their breast cancer. I think what we've got to do is take the learnings from the cancer field and apply them to endometriosis. As we better understand the disease, we're going to have so many more options to offer to people for every point in their reproductive life course.Whitaker research groupEXPPECT website This article was published on 2025-04-01
