Let's talk Endometriosis

WILD SESSIONS PODCAST

Let’s talk Endometriosis

with Dr Elizabeth Ball, Gynaecologist

Henrietta: So for this episode, I am recording with an incredible woman, Dr. Elizabeth Ball, who is a consultant gynaecologist. And we are recording this in the month of March, which is endometriosis awareness month. And I really wanted to record something that would help or contribute to elevating awareness and understanding of endometriosis. Endometriosis is a subject that is professionally of great interest to me, but also personally something I feel very passionate about as well as somebody who has been diagnosed and experienced many challenges with endometriosis. And I feel that it is totally unacceptable for it to be such a widespread condition, and still, it takes seven and a half years for women to be diagnosed. It's estimated that 190 million women, so that's one in 10 women across the world of reproductive age have endometriosis have been diagnosed with endometriosis and there are many, many more who have not been diagnosed. So this is a really important interview for me. And there was nobody better, in my view to interview than Dr. Elizabeth Ball. She has a specialist interest in pelvic pain, endometriosis and fibroids. And Elizabeth's approach is very progressive, she believes in a holistic women centred approach to gynaecological conditions. So it's looking at surgery, but also nonsurgical interventions and looking at a very individualized approach to treatments and looking at the women in front of her and giving recommendations according to that specific individual. And this progressive approach means that the needs of the patient, rather than the disease are at the centre of her work every time. So, Elizabeth, I'd love to hear a little bit more from you about how you got into this particular area of medicine.

Elizabeth: Yes, it was a long time ago. How I got into to doing keyhole surgery or laparoscopic surgery is a, is a nice story. It was up north in North Umbria where I was doing my PhD and a consultant colleague of mine, when I was a very, very small young junior doctor, um picked up on the way I was working with my hands and he said, "You have to become a laparoscopic surgeon". So I, I followed that, it was my passion and I think I came to the whole world of end endometriosis through the surgery. I'm a very patient person, I am happy to spend a long time unravelling things that are stuck together. So just love that. But, later in my training I understood more about pelvic pain with all its complexities and that although surgery is very valuable, it's certainly not the only way of treating endometriosis. So, when I studied, we were always given this, you can treat it with pain killers, you can treat endometriosis, medically, or surgically or a combination of all. But lately I've been gaining a much deeper understanding how lifestyle and self management can also would be a big contributor to living well with endometriosis.

Henrietta: With endometriosis, as you've already alluded to, it's looking to the management of it rather than necessarily a, a kind of out and out cure, because the theory is that it can't actually be cured. It is about an individual learning to manage their symptoms. And also as you've to, it's a very complex condition where there's an interweave with all the different systems in the body. I think the world health organization define it as, and I'll read this out because I think it illustrates the kind of complexity and widespread nature of endometriosis. It defines it as a chronic disease associated with severe life impacting pain during period, sexual intercourse, bowel movements and or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, depression, anxiety, and infertility. I mean, you know that it's almost like a catch or condition. And I think that from my experience as a professional working in the more natural health aspect of the management at endometriosis, that's one of the reasons why the average length of time for woman to be diagnosed, as I think now it's about seven and a half years, I think it was about 10. So we've made progress, but there's huge amount more to do. And I wonder how the very widespread symptoms of endometriosis, I wonder if that contributes to that delayed diagnosis because the symptoms can be with lots of different conditions. So can you tell us a little bit about that and why you think that diagnosis is so difficult and so long?

Elizabeth: Absolutely do that. I just wanted to throw in is a, is a bit of comfort for women with endometriosis. When you said it's a chronic disease and, and linked to all these complaints, I have a large number of patients who came with endometriosis pain and had their surgery. And then I see them back when they want HRT many years down the line and all these years they've been fine. So I don't want this idea that endometriosis being given that name of incurable. I think quality of life can be much improved through a combination of therapies and some people are without symptoms for a very, very long time.

Henrietta: I would absolutely agree with that, and I think that's why it's so important and powerful to know the tools of how to manage it, to keep symptoms at bay.

Elizabeth: I am a big believer in being quite aggressive with the endometriosis, but leaving all the organs that belong to my clients like the tubes, the ovaries, the uterus. If at all possible leave all that inside. I spent two years in the US, and that was my best time in my training because it was so inspiring. I worked with a world class endometriosis team in Milwaukee, Charles Cone, Grace Janik, so they pioneered this radical excision of endometriosis, but at the same time, fertility sparing. So you're tough on the endometriosis, but gentle on the organs, as I, as I said, and I made this my own philosophy and, uh, often times a hysterectomy is seen as the only way forward, but often times a hysterectomy is not the solution either because the uterus is an innocent bystander that wasn't affect by endometriosis or even after hysterectomy, there's a possibility of not getting rid of the pain.

Henrietta: And I know when we've spoken, you've said that for you it's where the endometriosis is located, which can determine whether or not surgery is, is necessary as well. Yeah.

Elizabeth: It's early days, but I've done some research into finding out which type of endometriosis when removed by surgery gives a good pain relief. And there is emerging evidence, but I don't want to be quoted on that because it's so early, but it seems that the endometriosis involving the ovaries and uterus cycle ligaments, which are muscle bands at the very top of the vagina. So if endometriosis is, is going into these areas removing that seems to make a real sea change regarding the pain, whereas surface endometriosis. Removing that, there's oftentimes not such a big healing effect from the laparoscopy, but there are other studies underway investigating that further. So if there's mainly surface endometriosis, I think my rule of thumb or my recommendation, what I would want for myself or my family is maximizing the nonsurgical approaches and where there's endometriosis that is distorting the architecture of the body, I think their surgery should be sort of considered earlier.

Henrietta: I like the way you used the architecture, because I know that also in previous conversations you've spoken about the lining as being wallpaper to help people understand that, which is great. And so I know that also you've been very influential in developing more research into those more holistic, complimentary ways of managing endometriosis, including mindfulness. I know you've done some work with Headspace. So can you tell us a bit about the impact that mindfulness can have on symptom management?

Elizabeth: Yes. So, um, it started off with is something called a systematic review where you pull together all the world literature. And my question is, can mindfulness, meditation helped with chronic pain? And we were able to confirm that it is effective. It is a small to medium size effect, but there is an effect. And then our aim was to see if that could be taught by an app. So many people like the app and 'Headspace' is only one of them where we develop the pain module, but there are other apps, 'calm' is a beautiful app that teaches that as well. So the underlying physiology, the way it's working, it really bigs up the parasympathetic nervous system. So that's what we think is the pathway there. And the parasympathetic system is the part of the nervous system that is calming. Whereas the sympathetic system bit like ying and yang sympathetic system is running away is fighting. So it is a very activated part of the nervous system. With chronic pain, the sympathetic. System is always on edge. So even a smaller stimulus, let's say the hand of an endometriosis patient is put into hot water, the pain is felt at a lower temperature of hot water than someone without end endometriosis because the body's sensitized to the pain. Mindfulness meditation calms all that down. Doesn't have to be mindfulness meditation, it could also be exercise, listening to music, putting your legs up against the wall. So there are many, many ways of being gentle with yourself and looking after yourself.

Henrietta: Just try and bring that back into balance.

Elizabeth: Exactly .The other piece of research that could be relevant for anyone of you who is undergoing. Surgery or an uncomfortable procedure. If you listen to calming music in the run up to the procedure, after the procedure you'll have two centimetres less pain on the 10 centimetre pain scale.

Henrietta: That's incredible.

Elizabeth: So reduction of anxiety and the all over their experience is better than without music.

Henrietta: That's an incredible statistic, and that's been documented in, in research.

Elizabeth: Yeah, that's published in the Lancet

Henrietta: And also, much of the research is preliminary, but around the use of acupuncture for pain management as well. And again, working on that same system of finding that balance between the sympathetic and parasympathetic nervous system. And also sleep. We know that there's a link between melatonin and the immune system as well, and that management of sort of systemic inflammation. And do you find that with your clients who are experiencing other conditions as well? because I do want to talk about the cystic condition, adenomyosis.

Elizabeth: So adenomyosis is a cystic condition. If we imagine the lining of the womb like wallpaper, so the space inside the womb is a little room lined with wallpaper. In endometriosis, that lining is dispersed in other parts of the body, around the ovaries, the fallopian tube. Sometimes it's sitting on the bowel and every month it's producing a period inflammation. So there's oftentimes a little blood blister visible when you do the keyhole surgery and with adenomyosis have a situation where cells that should be lining the womb, like the wallpaper they're embedded in the wall. So every month with a period there's bruising within the wall, especially the back wall. And that becomes really real sensitive. And I often hear that women get pain after sex, sometimes lasting several days because that area is so, so bruised because it gets hit during sex. There is something that I could just give as a food for thought for people who might be suffering from that, there's a device called the 'Ohnut' device. If you Google it, it's a little buffer that's actually worn by the husband over the base of the penis so the penetration's not so deep and the sensitive area doesn't get hit so bad. So that . Helps both with adenomyosis and endometriosis something you can, you can do home.

Henrietta: We'll certainly put that in the show notes as well, so that people can find that.

Elizabeth: So, uh, adenomyosis typically shows itself in heavy and painful periods. And pain is oftentimes after sexual intercourse. Endometriosis pain, oftentimes is during sex and periods are painful, but not necessarily heavy. So if, if there's a heavy, painful period, adenomyosis might be the reason, or it could be a combination of end endometriosis and adenomyosis. 20 years ago, the only way of diagnosing that would be to take out the uterus and send it to the lab and look at it under the microscope, but nowadays with the modern ways of doing ultrasound scan or MRI scan, points us towards adenomyosis can be picked up on imaging. And whereas in the past, the hysterectomy was the only treatment available and nowadays the first line treatment for adenomyosis for women who are not trying for a baby is considering a, a medicated coil that is covered with progesterone. And the progesterone works very locally on the lining of the womb and on the lining of the womb that is within the wall of the womb. Not that much of the medication gets absorbed, I always liken it to nail varnish, put it in one place and it's beautiful where it is, but it doesn't get so strongly in the bloodstream, like the pill injection or swallowing a pill.

Henrietta: So it's very localized to the area that needs it? And I seem to remember as well that it's more common in women that are of a, mature age that might have had children. Is that right?

Elizabeth: Mm-hmm well, that was what I was taught at university, but now we think that in some women these cells could have been mislaid from very, very early on in life, perhaps, even from the time when that woman was an embryo.

Henrietta: That's a segue over to causes of endometriosis, which I know is a hot topic of discussion because there are different theories as to what causes endometriosis and still a lot of mystery behind it. Can you talk to us a little bit about that?

Elizabeth: Well, endometriosis has a genetic component, but it's not a black and white way of inheriting sort of like a dominant or a recessive pathway of inheriting. So the two theories that we have, one is retrograde menstruation where some of the period blood actually flows back into the body, through the fallopian tubes, and the concern is that that blood transports cells from the lining of the womb into deeper inside the body where it then implants itself and causes endometriosis. And the other theory involves cells, are mislaid from very early on in the development. So these two theories coexisted for many years, and there might be truth in both of them. Again, it's not black and white. And I think the emerging understanding is that when people have this retrograde menstrual bleeding, many, many women have that, but not everyone gets endometriosis. So there might be an additional gap in the immune system clearing away these cells that have flown back into the body, so in endometriosis women, there might be less of a clearance mechanism.

Henrietta: And is that genetically influenced as well?

Elizabeth: Yes.

Henrietta: And so is it of relevance for women to look back at the other females in their family?

Elizabeth: I think it is good to talk to your mother about periods because in some families, this is not spoken about, and sometimes I get hints towards issues in the last generation when someone says, "oh, my mother had a hysterectomy at the age of 35". So that's very early. That was one way of dealing with endometriosis. So it could actually open up a meaningful conversation about a condition that the mom might have suffered and there might be sharing that would they not have happened.

Henrietta: I know from my personal experience, having experienced endometriosis actually. When I've spoken to my mother about it and her mother, who experienced things that were not wanting to break confidentiality, but my mother did have a hysterectomy, but it wasn't because it was endometriosis, it was just, she was experiencing issues. And so that was the first line of treatment at that time. And I know that my grandmother experienced similar challenges. So it's very interesting even though at the time it would not have been diagnosed as endometriosis. So for those women that, as I say, might be suspecting that they have endometriosis, what would you recommend to them? What is the first point of call that you would say for them to explore?

Elizabeth: I think it's a good start to a chart the symptoms. Endometriosis is linked to permanent pelvic pain, but there's also a strong link to pain during the run up of the period and during the first two days or three days of period. So actually just diarizing that before you go and see your GP or specialist would be a helpful thing, and some people get ovulation pain. So that might be worthwhile just noting down, getting to know the menstrual cycles and the symptoms throughout the menstrual cycles. I think that would be a very good thing. One thing that can help as an initial management option would be to use painkillers. And here, I'm thinking of the most painful days during the periods and the run up of the periods and a good combination would be a nonsteroidal painkiller from the aspirin family combined with paracetamol. And the trick is not to wait until the pain is really, really bad, but to take it on a regular basis, you know, just for these four, five days a month, take these tablets on a regular basis. And my pharmacology lecturer always said, tell your patients when you take a pain killer, just rest for a few minutes after you've taken the pain killer. So the body knows that you've done something for your body. Hot water bottle, most people with endometriosis know that already, and sometimes people have skin marks from hot water bottle. So I can sometimes diagnose just from seeing the skin that there's a lot of pain there. There is something very smart that's a relatively new addition to something that we can do at home for pain, and this is called the tens unit. So there are options where that is combined with heat, or just uses electricity to soothe the pain.

Henrietta: And my understanding of those going back to sort of pregnancy days is that you can either buy them, but you can also rent them for the times that you need them. And you've already spoken about the power of mindfulness and exercise. And is there anything else in that sort of management that you would suggest as well?

Elizabeth: Yes. Oftentimes with endometriosis, chronic pelvic pain, the bowels are very sensitive and there's a lot of bloating and women come to my office and say, "look, I look like nine months pregnant" and it's all bloating. So years ago there was that thinking you have pelvic pain, it's either due to irritable bowel syndrome or to endometriosis, but research has now shown that there's a link between the two. And treatment that works for irritable bowel syndrome, diet choices can make a meaningful difference. And I recall two or three people who came back to me and said "a diet helped me more than the operation". So the diet that I tend to recommend in the first instance is a low fodmap diet. Fodmap's are sugars that can ferment in the body. And produce gas, and if there's gas in the bowels, the bowels start to get angry, they become crampy, and with the endometriosis inflammation and the nervous system being sensitized, this can all just get into a really painful situation. So well known fodmaps are dairy, gluten and these artificial sweeteners, and my recommendation would be to go dairy free for a few weeks and just chart down the dates and whether you feel better. If nothing changes, just have the dairy again and move on to the gluten free. Don't give up everything at once. First of all, you'll give up the whole diet after one day, because they’ll be hardly anything to eat.

Henrietta: I absolutely ok that

Elizabeth: And secondly, we'd never know your food triggers. So, becoming your own food detective will be very meaningful because then you know your trigger foods and you know how to avoid them.

Henrietta: Absolutely, and I know we've spoken before about this and diet specifically, there are some very general pieces of advice that we can give that have research has shown benefits, as you've already mentioned the anecdotal evidence around that is nothing more robust than patients trying it and coming back and saying, actually this worked or that worked, but there is also a need for a very individualized approach as well. Sometimes when it comes to diet and the guts, I think is a really interesting area of exploration for research because of the balance of bacteria, the impact that that has on immune function and control of inflammatory chemicals as well, which often produced in the gut, the production of serotonin as well. You know, serotonin has a kind of pain management effect doesn't it as well as supporting our sense of feeling good. We know that that can also have an impact on women with endometriosis. So I think you're absolutely right centering on the gut, 70% of the immune system is located in the gut tissue, so it's incredibly important. And I'm just hugely grateful for the work that you are doing in giving that very holistic information, because at the end of the day that's what we can do for women is for them to make informed decisions about what works for them. And I just wanted to talk a bit as well about fertility, because that tends to be where some women will find out that they have endometriosis by going down the route of trying to conceive and then finding that there are challenges there and that further exploration leads to a diagnosis of endometriosis. So endometriosis has had the reputation, I suppose, of causing infertility. If you're told you have endometriosis, it's almost a carte blanche you are going to be sub fertile or infertile. Can you tell me a bit more about what your view on that is?

Elizabeth: Yes.

Henrietta: Um, and why that might be.

Elizabeth: Yeah, it's surely not black and white, I've seen and looked after so many women on the labour ward giving birth who previously had endometriosis diagnosed. So it's absolutely not a black and white situation where you can say, oh, endometriosis equals infertility. I think it depends on other factors as well. The location of endometriosis, is the endometriosis deep or surface endometriosis, are the fallopian tubes involved, are the ovaries involved. So it is calls for very individualized care because if the ovaries are involved and there are multiple surgeries on the ovary removing cyst that can also hurt the eggs on the ovaries, and that could Palm fertility, but on the other hand, Endometriosis is on the ovary can also harm the eggs. So oftentimes, I sit together in what we call a multidisciplinary team meeting with a fertility doctor, where we weigh up the best course for an individual person, whether it is surgery, whether it is input from the fertility unit. So I don't think one can make general statements on that, but I don't want people to lose hope because it is absolutely possible to have kids with endometriosis. I think what we must not underestimate, is the influence of age of a woman, and sometimes with endometriosis, people are being put on the pill in order to control the endometriosis symptoms for many, many years. And then when they reach 40 or 41, they think, "oh right, it's time for baby". The situation there is with endometriosis and the added aging of the ovary, that is then a lot more difficult to fall pregnant. So if there is a rule of thumb, I would be a lousy gynaecologist if I didn't say, if it is at all possible in your life planning, plan to have your kids relatively early in life, because then the strength of the ovaries, and the number of eggs to a certain degree can outbalance the negative effects on fertility from endometriosis.

Henrietta: And that's advice that you would give to women, especially with endometriosis?

Elizabeth: Especially with endometriosis. Because then we have two factors, if fertility is left until later in life there could be progression of endometriosis and aging of the ovaries, and that taken together makes it more difficult to fall pregnant, . But I also appreciate that it is very hurtful and sometimes not very useful if a message is being put out 'Fall . Pregnant and the endometriosis will get better'. I hear that often back from patients who have been told this, and that can be very hurtful and is not useful and adds more pressure. So I just want to acknowledge that.

Henrietta: Well, that's certainly actually was my personal experience of it as well. So it's very important to have that sensitivity there. Liza I know that you've done, I should have said this right at the beginning. You've done a full day of surgery and you must be exhausted. And I just want to steal five more minutes from you if that's okay, because you have given us a wealth of knowledge and information during this chat. Thank you so very much. And I just wanted to recap on if you could give women a kind of top line instruction on, if they suspect that they have endometriosis, what should they do? Should they go to your GP? Tell me what you would recommend.

Elizabeth: Yeah. So when I talk to my medical students and I ask them, how do you diagnose endometriosis? It is one of these flags, these red flags where you think, I could have endometriosis. it's a combination of painful periods and painful sex. That oftentimes points to the type of end endometriosis that changes the architecture of the body and causes internal scarring and inflammation. So that pain on deep penetration and painful periods. These two things together, they are red flags. There's numerous other things, fatigue, there's pain that's not linked to cycles and there's ovulation pain, but these two, they are the top ones. And I would recommend to talk to GP in the first instance, and then perhaps trying some of the things that we've discussed. Uh, we haven't really covered in much depth how contraceptive hormones can actually calm things down because every period flares up endometriosis. And if a period is suppressed or made into an artificial period, what call a pill period that is oftentimes much less painful. So that is something that can absolutely be done in the community. But if that doesn't help or you really want to get to the bottom of what is happening rather than just managing the symptoms, it might be a good idea to, to see a specialist. And if there's a lot of bowel pain, pain on passing stools during menstruation, you might actually want to discuss with your GP, whether it would be worthwhile to be referred to an endometriosis centre, which specializes in deeper endometriosis. But in any case, seeing a specialist would be valuable because that specialist could offer vaginal examination to find out about the architecture, whether the womb is sort of held back, whether it's restricted in its movement. Unfortunately that's a bit of an uncomfortable experience, but it could be a big pointer towards whether there is endometriosis and whether it is likely to be the type of end endometriosis where laparoscopy can make a real difference.

Henrietta: And so if people wanted to get hold of you, from this conversation, where would they be able to contact you? Elizabeth, tell us a little bit about where you work.

Elizabeth: Yes. My NHS base is Barts health. That's where I'm actually right now.

Henrietta: Filming. Yes, I could see, she's in her scrubs and in a, in a room. Yes. I could see her in the hospital.

Elizabeth: Yes. So I work at the Royal London hospital in London, and I started the endometriosis centre and I'm leading it. I also have a private practice, which is in Harley street and there I work at the princess grace hospital. And I also will be working in that very new hospital that's about to open called the Cleveland clinic.

Henrietta: And if you could grant one wish into the sort of endometriosis community for the future of endometriosis. What would that be?

Elizabeth: My hope is that in the future medical treatment will be found that doesn't just calm down endometriosis, but makes it go away.

Henrietta: Well, I hope for that too. that's a great wish to grant. And if I was Aladdin I would grant it to you, but there seems to be a much greater awareness, a much greater level of attention given to this health condition as more and more people are aware of it. And so I feel that there is only hope for a more progressive way of approaching it and more insight into how it comes about. And if we can go further upstream, we can intervene further upstream as well. So Liza thank you so very much for talking to us, it's been a really informative conversation. I've learnt a lot as well. And I'm sure that our listeners would've learnt a huge amount. So thank you so very much for your time

Elizabeth: Henrietta, it's been a pleasure.