Full transcript
Jean: Today, I'm here with Professor Katy Vincent, a researcher and Consultant Gynaecologist at the University of Oxford, specializing in chronic pelvic pain, endometriosis, and period pain. We discussed her latest research, the challenges in diagnosing and treating these conditions, and how they impact women's physical and mental health.
It gives me great pleasure to welcome Professor Katy Vincent, who is a researcher at the University of Oxford and a Consultant Gynaecologist. We're going to be discussing the prevalence of pelvic pain in women and women's health as a whole. Welcome.
Katy: Thank you, thank you ever so much for having me.
Jane: Thank you so much for being here. Pelvic pain in women and women's health issues affect a great deal of the population, but they're not very well resourced and not very well understood, I think it would be fair to say.
Yeah.
Introduction:
Jean: With something like 10% of women living with endometriosis and 25% of women experiencing pelvic pain at some point in their lives. Would you mind giving us a little insight into what it was that drew you into exploring women's health and pelvic pain as a whole?
Katy: Yeah. So I wanted to be a gynaecologist for a really long time, and I don't quite understand why I had an interest in women's health more broadly even before I went to university, but that was definitely the area of medicine that really interested me. As I started working as a gynaecologist, as a training doctor, I became more and more interested in endometriosis specifically, and it was at a time that surgical techniques were really developing as well. So it was an exciting area to be in. But I realized after a while that I was more interested in the people who we didn't find endometriosis in than the people that we did where we could do a fancy operation and that actually we didn't do anything for those women. You'd come, you'd be referred into the hospital, you'd have a procedure to look for endometriosis, and if we didn't find it, we'd say, “oh, congratulations, your pelvis looks completely normal” and discharge them back to the GP. But actually we've done nothing about the symptom that they'd come with other than to tell them that their tests were normal. And I realized that that was a whole area that actually we really didn't know very much about and that I was really interested in. So at the same time as doing some research and developing my clinical training, I really focused on that area. And then over time I realized that I was also really interested in what happened quite early in reproductive life, that actually almost every patient I saw would say “I was fine up until my period started. And then I had some period pain and then it got worse and worse and worse” and I thought, actually there's something really interesting here that we really don't understand. And the world as a whole still thinks of period pain as normal. And you've got to kind of man up and learn to live with it rather than thinking, actually this is something that really impacts on young, young women's lives and happens so commonly and so frequently, you know, a couple of days a month every month throughout your teens. That's a huge number of days of life impacted. So yeah, between those sort of two things together, I've really become interested in pain as a whole in women's lives, but particularly pelvic pain and particularly thinking about teenagers as sort of the start of that journey. And I do think that there's something about reproductive health in general that we don't learn or know enough about it, and that maybe young women, teenagers sort of understanding their bodies better would be a really helpful thing for us to do as a society.
Jean: Thank you so much for that introduction, I'm so looking forward to delving into everything that you've just mentioned. I think it would be really helpful for the listeners to start off by just defining what endometriosis is and then defining what pelvic pain is outside of endometriosis and the symptoms that you could connect to that that aren't linked to endometriosis.
Katy: So, endometriosis is a really common condition, as you mentioned. We think about one in ten of those who are born female, so I guess I should say we're saying women here in our conversations, but there are lots of people who have female anatomy who don't necessarily identify as being a woman, and our conversations absolutely apply to them as well. So the endometrium is the lining tissue of the womb, so the tissue that would normally grow each month and then bleed. And endometriosis is where we find that lining tissue outside of the womb and it's most commonly in the pelvis on the lining tissue of the pelvis, but sometimes on the ovaries or on the bowel or the bladder for example, and it responds to hormones in the same way that the lining tissue in the right place does. So it grows with the month and it bleeds and it can cause inflammation and scarring. And it really commonly is associated with pelvic pain symptoms. So the sort of classic symptoms that you see are period pain, pain throughout the month and pain with sex. People will also sometimes describe pain with opening their bowels, pain with passing urine. But I think we're increasingly aware that women with endometriosis have a much broader spread of symptoms as well. So we'll hear people describe having chronic fatigue, you know, being tired all the time, never waking up refreshed from sleep. We know that people who have endometriosis will suffer with increased levels of depression and anxiety and how much of that is due to having to suffer with symptoms that aren't taken seriously and that you don't understand, I think it's very hard to sort of put a number on that and lots of people will describe other medical conditions. We know that people with endometriosis are more likely to have certain types of arthritis, for example, more likely to have other kinds of chronic pain conditions. So there's certainly lots of overlap that we still don't completely understand.
Jean: Is there any understanding around where endometriosis comes from?
Katy: Yeah. So we don't completely understand why endometriosis happens. There's a number of theories and I think the sort best supported evidence at the moment is a theory of what we call retrograde menstruation. So when you have a period, obviously you're used to seeing the blood coming out through the neck of the womb, through the vagina and out, but blood will also go backwards up through the fallopian tubes and out into the pelvis. And within that blood there will be little bits of tissue from the lining of the womb. And so one of the theories is that those bits of tissue will then come out through the tubes into the pelvis and then can stick in places around the pelvis. And that there are probably differences in the immune system, for example, of those with endometriosis. That means that the body doesn't naturally clear those cells away and they stay and continue to grow. There's also ideas that some of the cells may have been laid down very early in development. So in sort of developing fetus stage, what we would call stem cells that stay, get set down early on and then develop once puberty happens and you start having these cyclical changes in hormones, that they would then continue to make those cells grow. So it's something that you're born with, not something that you sort of develop. So, I mean, you do develop it, obviously, of course, as you go through puberty. That's a really good question. And it's certainly what would be considered as a complex trait. But there's definitely a genetic component to it. And lots of studies have begun to identify which genes might be responsible. But it isn't a case of saying, you know, if you have this one gene, you're going to develop endometriosis. And if you don't have that gene, you'll be fine and you won't. So there's a genetic predisposition to it, but that's probably all sorts of other environmental factors that will then contribute to whether somebody develops endometriosis and whether they develop the symptoms that go with it. Because one of the things that we know about endometriosis is the amount of disease you have doesn't relate to the symptoms you have. So there are some people who have really severe endometriosis but actually don't know about it because they don't have any symptoms at all. And there are other people who have disabling symptoms but hardly any disease at all, when we sort of look down the camera to see how much we can quantify.
Jean: Is it progressive?
Katy: That's a very good question. And I think at the moment we don't have the evidence to answer that. So in order to really be certain whether it was progressive, we would have to take a huge group of women and we would have to do a laparoscopy. So a keyhole procedure, putting a camera into their pelvis and track how much disease they had every six months or every year or every two years. And obviously, ethically, that's a pretty difficult study to do. And at the moment we don't have a non-invasive diagnostic test, so we don't have any way of saying to someone, if you give us a blood test or if you give us a saliva test, will tell you whether you do or you don't have disease and we don't have a way of mapping how much disease you have. If you only have mild disease, the more severe forms of the disease, so, the sort of cysts on the ovary or around the back passage or between the bowel and the vagina, for example, we can map some of that with an MRI scan, but not the milder forms. So I don't think we know for definite whether it's progressive. And some of the genetic data seems to suggest that actually the stage one and stage two disease, which are the milder forms of the disease, seem to have a completely different genetic makeup to the stage three and the stage four disease. So the more advanced form. So I don't think that we should assume that everybody who has mild disease will progress on to severe disease at some point if we don't do some form of intervention.
Jean: But obviously anyone who has severe disease must have started to grow that gradually from somewhere. Fascinating. Thank you. And just last thing on that.
Jean: Can you confirm that endometriosis is something that you can physically see evidence for on a scan and it's not a fabrication of the mind?
I really hope that everybody believes in endometriosis nowadays. We can't see it on ultrasound scans for everybody and we can't even see it on sort of advanced MRI scans if you have the milder forms of the disease. But if we put a camera in to the pelvis, then we can see red areas of growing tissue. We can see the scarring and the burnt out areas of the tissue that's repeatedly bled and scarred. We can take biopsies of that tissue and we can send it to the lab and we can see that there are both the glandular areas of the lining of the womb and the stromal areas of the lining womb there within that tissue. So there's a very clear appearance under the microscope and down a camera to confirm that it is absolutely a real thing. So that's a fact. That's a fact.
So when it comes to the pelvic pain in women, that goes beyond or separate to endometriosis, how does that display and what kind of demographics do you see in people experiencing symptoms? So I think that that's a really challenging question because from my point of view, my interest is in the symptoms and we don't have anything, if we ask someone what their symptoms are, there's nothing that would make me say, “you've got those symptoms, you must have endometriosis, you've got those symptoms, you won't have endometriosis.” So I think about pelvic pain as a whole, and some of my patients will have endometriosis and some of them won't. But the treatments that we put forward and the things that we understand about their symptoms are often very similar, whether or not they have endometriosis. It's just that the endometriosis may have played a role in sort of setting up some of the patterns. So you can absolutely have really bad period pain, pain that varies with your menstrual cycle, pain that's associated with sex or opening your bowels, but not be able to find any endometriosis. And I don't think that that means that people who have pain without endometriosis are any less valid or justified to have treatment. And it's such a complex- Endometriosis itself is such a complex thing and the pelvis is such a complex place. It, you know, it has bowels, bladder, womb, ovaries, tubes all within it, but then it has a whole load of muscle around it and bones- Links nervous system as well. And loads of different nerves, all of which kind of cross and supply multiple different areas. So talk to each other. And I think we find that people can have irritation in one area to start with that then quite quickly sensitises other areas and you end up with that sort of picture where actually everything hurts and your bowel functions impacted and your bladder functions impacted and your skin feels sore to touch and that can progress quite quickly whether or not you've got endometriosis present or not.
In terms of demographics, I think that's a really good question. I think pelvic pain affects everybody. I don't think it matters what ethnic group you are, what socioeconomic group you are. You know, we used to say that endometriosis was a disease of, you know, middle class, middle-aged white women. But that was just the people who managed to get as far as getting a diagnosis. That doesn't reflect actually the people that have the symptoms. And we know, there was some data that came out from the Office of National Statistics in England just before Christmas, came out looking at the rates of diagnosis of endometriosis in England and looking at who was receiving those diagnoses. And there were definitely ethnic disparities. You know, Chinese women, for example, were much less likely to receive a diagnosis of endometriosis. But I don't think we think that that is purely about that being a genetic difference in the likelihood of getting endometriosis. It's about the fact that it's still really hard to get as far as getting a diagnosis, not just in the UK. We know that it takes sort of about 7 to 11 years across the world from starting to have symptoms before you actually get a diagnosis of endometriosis. It’s a long time to be without support. It’s a really long time. There's all sorts of cultural reasons why some people may not find it as easy to access that diagnosis. And obviously in countries where you're having to pay for your healthcare, we really lucky in, you know, in the UK we have the NHS and most people can access care even if it's a little bit slower than we would like at the moment. But in countries where you would have to pay for your diagnosis, those socioeconomic and ethnic discrepancies are going to be much more marked. And it requires a great deal of time. Time and there’s confidence to advocate for yourself. And I think, you know, even if we go back just to period pain, you know, for a long time, we've just dismissed that as being normal. So you've really got to have the confidence to understand that your symptoms are impacting your life and to fight to be able to say that actually I want my mum to take it seriously. I want my teachers to take it seriously. Even before you've got to the stage of asking a doctor to take it seriously.
And I suppose also it sort of what you're saying leads to a wider question, which is sort of what is pain and when does it become a problem? Because obviously all of us experience pain, whether it's psychological or physical, or both. Obviously there's a link between the two, especially when chronic. But, you know, for pain to be, you know, someone else’s one might be another person's five on on the pain scale. But I guess a really relevant aspect to it is how much it affects your life and your ability to function and engage with the world around you and other people. And I think, you know, those pain scales are really helpful for us in our research. We have to be able to ask people questions to try and really quantify things and to look at relationships. But in terms of my clinical practice, I really don't use those scales very much because, as you say, it's about the person in front of you not comparing them to somebody else. And I sort of think about it in the same way. We used to think about heavy menstrual bleeding. We used to define heavy menstrual bleeding as someone who loses more than 80mls of blood in a period. And actually who measures the volume of their periods anyway? And actually- Good point. If your bleeding is heavy enough that it's getting in the way of your life, but it's only 70mls a month, then actually, surely you still need treatment. Whereas actually if you lose 200mils but you don't care, then we shouldn't force treatment on you. And heavy menstrual bleeding has moved away now to say, actually, we don't care about the volume, it's about is this bleeding heavy enough that it impacts on your life? And I think we should think about pain exactly the same way. If you would only rate your pain as two out of ten, but it is completely disabling, it stops you doing the hobbies you want to do, it stops you having the job you want to do, stops you going out and doing things, it interrupts your sleep, even if you only score it as two out of ten, that's still valid enough that we should be taking it seriously and treating you. And you know, you could rate your pain as really, really severe. But say actually, I know it isn't anything I need to worry about. I have ways of managing it, actually, I have other things I'd rather prioritise, thank you very much. In which case, why should we force treatment on people? So I think absolutely. As you say, it's about what impact does this have on my life and do I want to make any steps forwards to make a difference to that? And people are going to be very different about that.
I guess it sort of begs the question of management and what there is out there in the way of support. But before we get into that, I wanted to talk about another thing, which is, what is the link between pelvic pain in women and their reproductive health and their kind of physiology or skeletal system? I, for example, am someone with chronic pelvic pain, but there is an explanation for that on an X-ray, and it's to do with the structure of my bones, you know. But I could probably have quite similar symptoms to someone who perhaps has fibromyalgia. I don't know. I don't know enough about fibromyalgia. Perhaps you could help me with that. It's really, really hard to unpick where symptoms come from. And it's very unusual when someone has had pain for a long time that we just pick up one single thing that's the cause of their pain and one single thing that, if we treated it, would remove all of their pain altogether. So thinking holistically is definitely the way to go. There are very definitely types of clinical pictures that are associated with something to do with the reproductive system. So endometriosis is obviously a classic one. Adenomyosis is a related condition. It's where similar to endometriosis, it’s the lining of the womb, but instead of ending up outside of the womb, it just ends up in the muscle layer of the womb. So it wouldn't class as endometriosis because it's still within the womb but is still in the wrong place. And in the same way it grows and it bleeds each month and it's doing that within muscle and muscle really doesn't like being either stretched or irritated by bleeding. So again, we see people having heavy, very painful periods and can often see sort of irregular bleeding and other types of pelvic pain.
So those are sort of two kind of classic reproductive type system symptoms. And I think that there is a role of pain sort of more broadly. We're sort of brought up to understand and we learn as we grow that pain is a warning signal of danger and damage, right.
When people experience pelvic pain, it's entirely reasonable for them to worry about the damage being done to their reproductive organs. This concern is particularly important for younger women, who may worry that their pain might affect their ability to have children in the future. However, for those who don't have endometriosis or adenomyosis, there's no evidence to suggest that their pelvic pain will impact their fertility. Many people with endometriosis and adenomyosis manage to get pregnant without problems and carry a pregnancy to term. While there will be a subgroup who need help from assisted conception and specialized gynaecologists, these numbers are much lower than people might think.
Our pelvises are very complicated, with a lot of muscle around the tummy walls, lower back, and pelvic floor, all linked with the bones around the pelvis. It's your center of gravity in layman's terms. You need your pelvis to be working properly to walk, stand up, and roll over, as all these actions are related to muscles. Some people have problems with their muscles or joints as the initial cause of their pelvic pain, while others might have endometriosis as the initial cause. Over time, changes in lifestyle and posture during pain can lead to secondary changes in the musculoskeletal system's function. Therefore, as well as treating endometriosis, it's important to rehabilitate the pelvis and get people back to moving normally, not being scared of activities that might flare their pain.
Up until recently, we didn't think about muscles as being related to pelvic pain. Suggesting someone see a physiotherapist for pelvic pain would have seemed crazy. Now, we know that a physiotherapist is a key part of the team managing pelvic pain.
Part of my work is dedicated to adolescence. Periods are often the first time many young people experience significant pain, other than minor accidents or broken limbs. Regular episodes of repeated pain often don't start until people begin having their periods. We know that 30 to 40% of adolescent girls have severe period pain, bad enough to miss time off school. This is a huge issue that hasn't been given much consideration until recently. The education we get in school about puberty is more about the practicalities of managing periods, like towels versus tampons, and contraception. The average age of starting periods in the UK is about 12, yet people often conflate periods and sexuality. Many girls starting their periods aren't thinking about being sexually active. Hormonal contraceptives are used as treatments for period pain, but it would be nicer if we had a different label for them, so they were just hormonal treatments rather than contraceptives.
There's increasing interest in pain more broadly, particularly what happens early in life and its impact on future pain experiences. Adverse childhood experiences, like stressful or traumatic events, can increase the risk of heart disease, diabetes, and chronic pain in the future. Historically, literature about trauma and sexual abuse in the context of pelvic pain has been poorly done and almost blaming. Any kind of stressful or traumatic experience can put your body on high alert and set up patterns in our bodies associated with chronic pain development and maintenance. Animal studies show that repeated episodes of separation from their mother can lead to pain behaviors in the future. It's not about an individual human not coping with an experience but a clear physiological reason why that body system develops.
We don't have evidence yet to say these factors impact whether someone has bad period pain or develops pelvic pain in their teens. Pelvic pain is similar to other types of chronic pain, so I would be surprised if evidence didn't gradually show this. Period pain itself might be enough to turn up the volume of our pain sensing system and predispose us to more chronic pain in the future. People often say their symptoms started as period pain and then progressed to pain throughout the month. We're exploring how period pain in adolescence impacts chronic pain in adulthood and the mechanisms explaining this. Understanding these mechanisms can help us put treatments in place to reverse or prevent changes.
I would love to live in a world where everyone with period pain realizes it's valued and important enough to seek treatment and gets good treatment early on. If we understand the mechanisms by which these things are related, we can put strategies in place to make a difference.
Classically, we divide period pain into primary and secondary. Primary period pain is not associated with pathology, while secondary period pain is associated with pathology like endometriosis or adenomyosis. Personally, I think this distinction is unhelpful because it invalidates primary period pain and means you have to be investigated to find out if you have pathology. If you're 13 and have really painful periods, we need to stop your period pain rather than spending time looking for something that may or may not be there. We don't have evidence that the mechanisms generating period pain are different whether or not you have underlying pathology. Period pain or dysmenorrhea should be the sole label for it.
There has been some work done on diet and exercise as treatments for period pain, but not on whether they might influence developing symptoms. Lifestyle factors are very personal, and studies haven't captured this well. Sleep is really important for chronic pain. Depriving someone of sleep makes them more sensitive to pain, and coping with pain is harder when you're tired. Chronic pain and chronic fatigue often occur together, so strategies to help with sleep are important. Pain waking you from sleep feeds into this pattern.
You can find all sorts of endometriosis diets or painful bladder syndrome diets online, some based on evidence, but many are business models selling to vulnerable people. There is some evidence that reducing inflammation generally reduces symptoms, but we don't have good evidence on diet components for endometriosis. Exciting research is coming out about the microbiome, the bacterial content of the bowels, and its relation to inflammation, sensitivity, and pain. Over time, we'll see exciting developments about altering diets to make a healthier microbiome impacting pain, mental health, and resilience to stress.
Exercise is tricky to advise on, but anything working on core muscles is likely helpful, like pilates and yoga. These allow you to re-engage your body and mind together. If you have a muscle component to your pain flared by exercise, it might make things worse. Listening to your body is important, and people in pain often ignore their bodies to function. Mindfulness and similar approaches can help people re-engage with understanding their bodies.
Meditation has been hugely beneficial for me, though I didn't initially recognize its scientific benefits. Psychological approaches are central to managing chronic pain, including pelvic pain. Women's pain has been dismissed and normalized for decades, so suggesting meditation can be heard wrong. It's not the sole answer but part of empowering people to self-manage. We know how powerful our minds are, and the placebo effect is strong. Stress is powerful, and modern life is stressful, so we need ways to soothe our nervous system. Meditation and similar approaches are central, but teaching them and setting them within an appropriate management plan is challenging.
There are good resources out there, like charity websites with information checked by medical professionals. Endometriosis UK, the Pelvic Pain Support Network, and the International Painful Bladder Foundation provide valid and appropriate information. Self-management resources are gradually being produced but are personal and often need guidance. Books about personal experiences can help understand procedures. Dr. Rangan Chatterjee has produced beautiful resources about living day-to-day with stress, relevant for pain. There's no full package link, but spending time reflecting on your life and pain patterns is important. Drawing out a diary might reveal patterns not necessarily driven by the menstrual cycle. Community support is valuable but can sometimes lead to expecting the worst. Finding a supportive group is important, but wider societal support for women's health and pain conditions is needed.
This is an exciting time for women's health, with more funding and research. We understand pain better and recognize different mechanisms between men and women. We need to focus on women specifically. Accepting that many conditions are chronic and lifetime diagnoses, we can still live fulfilling lives with these diagnoses. Chronic pain approaches help people understand their priorities and goals, supporting them to live valuable lives despite symptoms. Early self-management and prevention can halt and reverse journeys more quickly. Treating pain for the sake of pain rather than looking for a diagnosis would be a significant change. Taking women's pain seriously, especially teenagers' period pain, is crucial.
For anyone listening, fight for your corner. Ask for help from everyone, listen to different opinions, and approach suggestions like meditation with an open mind and curiosity. People are often surprised by the benefits of these approaches.
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