Current Research on Endometriosis: An Interview with Tom Bainton
“There is hope and I’m genuinely optimistic for the future of endometriosis.”
Dr. Bainton, could you please introduce yourself briefly to our readers?
I’m Dr. Tom Bainton. I’m a clinician and research doctor working at Chelsea and Westminster Hospital in London, specializing in endometriosis, primarily in minimal access surgery, for endometriosis. However, I’m also a researcher at Imperial College London, looking primarily at reducing the significant delay in diagnosis as well as the relationship between endometriosis and inflammation, how that links to subfertility and the role of surgery in addressing that.
How did you come to research endometriosis and what were the topics you just mentioned?
Primarily it’s seeing the extraordinary effect that endometriosis, and particularly the huge delay in diagnosis, has on patients. We are a tertiary referral center at Chelsea, so we’re seeing patients with the most severe endometriosis who have often waited on average between eight to 12 years before they are sent to us for definitive diagnosis and treatment. These are eight to 12 years spent in the absolute prime of their lives. These are women in their teens, 20s, and early 30s who are developing their lives socially, professionally, in relationships, and wanting to start a family. This disease has hindered them in almost every aspect of that, causing debilitating pain and being often related to subfertility. On average, at least in the UK, There was a big UK inquiry by the all-party parliamentary group on endometriosis together with one of the Endo charities, Endometriosis UK, by questioning over 10,000 women, it found that almost two-thirds of women with endometriosis have visited their GP (General practitioner) more than 10 times with the same symptoms prior to diagnosis, which is obscene.
We’re seeing endometriosis in a whole spectrum, but trending towards the most severe. We’ve seen women lose kidneys because of endometriosis. Women have had to have a hysterectomy at a young age because of endometriosis on occasion, and women whose life course significantly changes. We can’t say definitively that an earlier diagnosis in all of those cases would have changed the shape of the disease, but it doesn’t come out of nowhere, and severe disease doesn’t appear overnight. Therefore, an earlier diagnosis would not only significantly help with the uncertainty people experience, but also help reduce disease progression, make the treatment smoother, easier, and lower overall morbidity. The other thing to say is that it has such an impact on fertility: an earlier diagnosis helps frame the conversation a little bit when the time comes for planning or starting a family and would help focus on investigating what might be slowing things down and what can be done about it sooner rather than later. One of the other biggest determinants of fertility success is age, which sadly keeps moving on during this diagnostic delay when things might perhaps have been looked into sooner otherwise.
The endometriosis specialist Dr. Tom Bainton from Chelsea and Westminster Hospital in London is advocating for the disease to be detected more quickly. That’s why he is researching better diagnostic options. His hope is to intervene earlier in the course of the disease in the future, thereby reducing the most severe outcomes.
One of the key things we’re looking at is that the confluence of symptoms isn’t the same in everyone and that there’s huge variability with different people presenting with different things. What we’re looking at is putting all the pieces together to enable the doctor and the woman to have some evidence to pinpoint and say, look, these are my five or six main symptoms and this is the combined likelihood of them being due to endometriosis, together with some first line investigations like a scan or blood tests. There are other things that need pursuing, so we can identify those people who don’t need to go through surgery as well as those who do? Because surgery is not a nice thing to have. Although laparoscopy and keyhole surgery are a safe procedure, it involves risk and recovery. Therefore, we need to identify people who will benefit from it and benefit from it more quickly.
How long have you been researching the early diagnostic?
This primary project I’m working on is coming up to two years, it is a prospective study we’re looking at. We have a hypothesis based on retrospective data on which factors we can use to predict it best. We’re now collecting data prospectively in women of whom we don’t know whether they have endometriosis or not, who are undergoing the gold standard diagnostic test, which is laparoscopy. We’re looking at many predictive factors based on clinical history and symptoms. Also, there’s a blood test. We’re looking at findings on imaging and then doing various statistical models to create an algorithm that best predicts it.
What do you think is the greatest challenge for endometriosis?
I think diagnosis has a very big part in it. I think awareness also comes into it. One of the factors why the diagnosis is so delayed is a lack of awareness among both parties. A woman might have symptoms even when she’s a young girl. When we talk to people with endometriosis, we find that the symptoms often go way back to when they first started their period. We know that women with endometriosis on average have many more days off school days, off work, and they’re missing more social opportunities. Their pain, or at least the effect of their pain on their lives is so much more than those around them. However, pain is a very difficult symptom to interpret and it’s a difficult symptom to try and quantify. The other significant barrier to getting a diagnosis is the normalization of these symptoms in women. People do experience these sorts of things, and periods can just be painful because they’re painful, we call that primary dysmenorrhea, without there being another cause. However, endometriosis is invariable so much more than that, has to be considered and it has to be considered early in the journey. It has to be prioritized, even just to rule it out. Pain is not something that should just be put up with or brushed under the carpet. It is certainly not a normal part of being a woman.
We don’t yet have the evidence to say which symptoms and which tests you can rule it out, we do have a third of people we do surgery on who don’t turn out to have any endometriosis identified. We need more evidence on what contributes to it. I think this is probably one of the greatest challenges. Coming into that is the sort of research we’re doing, looking at statistics and finding out which factors predispose to it, which factors predict it, as well as raising awareness. Happily there had been traction more recently about awareness and it is something people are now talking about. I think another priority is understanding the root cause. Where does it come from? Is it related to changes in the lining of the womb? Is it related to changes in the lining of the tummy? Is it a systemic inflammatory condition? It’s undoubtedly explicitly linked to the immune system, but what’s driving it and how can we target that in terms of finding a therapy for it?
If you had to summarise your work maybe with the inflammation regarding endometriosis for our readers in a simple way, how could you describe it?
We don’t know where endometriosis comes from. The question is how the endometrium gets outside the womb. In most women, there is some blood from menstruation flowing back through the fallopian tubes and spilling into the tummy. More than 90 percent of people have that, but only 10 percent of all people have endometriosis. Where is the seed sown to allow that tissue to implant elsewhere? Is this an issue primarily with the lining of the womb? We know that in women with endometriosis, the endometrium, the lining of the womb where it should be, is more inflammatory. We don’t understand exactly why that is.
Is the lining of the womb always more inflammatory and that facilitates its implanting elsewhere when it arrives in the lining of your tummy? Or is it that endometriosis seeds elsewhere and then some kind of feedback between endometriosis in the tummy and the lining of the womb mediates and increases inflammation? Possibly through the fallopian tubes. That’s important because the lining of the womb is incredibly significant for pregnancy. People with endometriosis don’t just struggle to get pregnant because of the effect it can have on the ovaries, the egg quality, or the fallopian tubes, which we know can be affected by endometriosis. Even when we control for that, using IVF and eggs donated from women without endometriosis, people with endometriosis still have a harder time getting pregnant, reflecting a primary womb issue. We are looking at how the lining of the womb is affected in people with endometriosis, and how surgery changes that.
We’re doing a biopsy of the womb before surgery. We’re removing all of the endometriosis during surgery and then we’re doing biopsies afterward to see how the inflammatory nature of the womb has changed. If the inflammation improves, it suggests that the endometriosis in the tummy is talking to the lining of the womb and making it more inflammatory. Then we’ve got some good evidence to show that surgery is helpful in women who are struggling to get pregnant and have a molecular cause for that. The evidence isn’t that clear at the moment. If the lining of the womb does not change, it might suggest that the root cause potentially lies in the womb itself and that more inflammatory fluid and endometrial tissue coming back is what’s allowing it to implant elsewhere. Therefore, it’ll help answer some of those key questions and might help contribute towards finding a therapeutic target and understanding the role of treatments like surgery. If we know what drivers in the immune system allow for it to happen, we can find a target and potentially have future therapies.
Do you have any other future goals for your research?
I think one thing always feeds into the next, and our prospective study is looking at which factors predispose to endometriosis. We’re looking at the group of women who are going to have that gold-standard diagnostic test, having a laparoscopy. The target population for this is women with endometriosis seeing their family doctor. After this study, our hope is that we involve primary care doctors, so also those women at the very beginning of their journey. We could even potentially randomize to those who are having the diagnostic algorithm and those who are not, to see whether it improved things. Of course, the reason why that’s a difficult study to do is that it needs to be a very long-time study, simply because on average it takes so long to diagnose endometriosis now. If we spoke to women at the beginning of their journey, we might not find out whether she has endo or not for over a decade. Therefore, it would take quite some time, but that would be our ambition.
If we could speed that process up, if we have very good, strong, definitive results in our prospective study then our hope would be to introduce this algorithm into national guidelines and the health care system. In the UK, the NHS at least, has very good standardisation of care across the whole country. If the NHS says, look, this is the guideline for treating individuals in primary care, it’s very quickly adopted by general practices across the whole nation. Similarly with the inflammatory arm of the study. Again, it’s about finding the root cause, and by so doing, we potentially might find another marker for endometriosis to help us with diagnosis. That’s been the elusive search for a biomarker for decades now. It’s always useful to look at more things in different places.
Additionally, finding potential therapeutic targets is the real golden goose because I would hope that at some point in my career we will be able to prevent it even beginning at an early stage. There’ll always be a role for surgery in some cases, however, we might be able to attack the disease far earlier in the course and stop it from getting as severe as we often see.
Did you ever have any or did you ever get any experience with digital self-help apps or anything?
Obviously, I haven’t got personal experience, but I see a lot of patients who use these things. I would say it is extremely beneficial when you’re coming to see the doctor and you’ve got some sort of track of things. A track of your symptoms over time and a track of what might improve or what might worsen these symptoms can help guide things as well. I know a lot of people are finding benefits from various nutritional regimes, and other strategies for managing symptoms of pain. Having a quantitative measure of how those are working is really useful because with these things it is often trial and error. There are so many different factors affecting all those symptoms, particularly things like fatigue, gastrointestinal, or musculoskeletal symptoms. Those things aren’t immediately related to the reproductive organs. I think tracking symptoms and having an app to do that is extremely useful. I see it a lot in my practice, and I think patients can benefit from it.
When doing research on other conditions and diseases that happen to people in later life, there are more traditional paper records. I think digital solutions definitely have more of a role in endometriosis when talking about where we might be going in the future, where most people affected are young and digitally aware. Having our algorithm digitised and available on an app or on a web portal is useful and having that on a very user-friendly platform is what we’re aiming for.
Is there anything else you would like to share with the women affected?
I think I would say that endometriosis is a horribly debilitating condition. It can affect almost every aspect of your life, but I would encourage people to recognise that there is hope and that things are changing. There is more funding for research than there has ever been, and there’s more awareness about endometriosis in society. There’s considerably less taboo about women’s health, less taboo about menstruation, less taboo about sex. However, we still need to work harder on it. I do a lot of work in public involvement. I go to people’s workplaces and talk about endometriosis to employers. And that includes men. I do think men need to be part of the conversation because half the population are men. We all have significant women in our lives who may or may not be affected. Therefore, we need to understand these things. However, there are groups in society who are potentially more marginalized.
There are people in London, which is a very diverse city, who aren’t involved in that conversation yet. Who still have those taboos and those barriers on top of all the other barriers they’ve got to access good health care. That can be economic, that can be social, and that can be a language barrier. I think contextualising things in everyone’s cultural background is incredibly important as well. There is hope and I’m genuinely optimistic for the future of endometriosis. I can sense the tide is turning, but it still needs more. It needs vastly more money not only in research but in the actual provision of health care. I hope whatever else it might be, you’ve still got to have access to meaningful treatment. There needs to be much more funding for surgeons. We are a limited resource. Endometriosis is complex. It doesn’t take only one person to treat endometriosis.
We have a multidisciplinary team of eight or nine doctors, allied health care professionals, specialist nurses, sonographers, radiologists, fertility experts, urologists, colorectal surgeons, chronic pain therapists, and psychotherapists. Everything needs to come together. That costs a huge amount, and it is really limited. I think we offer a good quality of care to people in our tertiary center for endometriosis. We have all sorts of things set up. There is a long waiting list for it, but we’re only seeing those women with the severe disease and that is not what they set up at every single hospital in the country. Not everyone has equal access to these sorts of things and endometriosis is much misunderstood. That I hope, is starting to change as well.