Hormonal changes and endometriosis: busting myths and seeking help

Joining Dr Louise Newson on the podcast this week is Jen Moore, a campaigner dedicated to raising awareness of endometriosis and adenomyosis.

Jen started experiencing endometriosis symptoms at the age of 11, but it took her 22 years to receive a diagnosis of endometriosis, adenomyosis and fibroids. By this stage organ failure was a risk and she required multiple surgeries, including a hysterectomy.

She has since become committed to helping other women – from speaking out to creating research projects. Here, she shares three things she believes women with endometriosis can do to make a difference to their future health:

1. Find a specialist – someone you can ask as many questions as you want, because if they are genuinely a specialist, they will not be afraid of answering questions.
2. Don’t feel like you have to do it alone. You have your medical team, but you also need a team outside of the hospital. It doesn’t matter who it is, even if it’s somebody online, just reach out. There are so many of us who are just happy to help even if it’s just to talk.
3. Keep going. When you get your diagnosis, you can think awesome, everything’s going to change. But then you realise, that’s just the start of it – you’ve got this wait list to get treatment and it can be a long slog. It’s exhausting, but it’s important that we do.

You can follow Jen on Instagram at @jen.dometriosis and find out more at  www.jenmoore.co.uk

For more information on Newson Health, click here.

Transcript

Dr Louise Newson: [00:00:11] Hello. I’m Dr Louise Newson. I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. I’m also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research, bust myths on menopause symptoms and treatments and often share moving and always inspirational personal stories. This podcast is brought to you by the Newson Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So I’m very excited for my podcast today because we’re going to be talking about endometriosis, which is incredibly common and something I learned nothing about at medical school. I learned nothing about menopause, perimenopause or endometriosis, and it’s shocking because it’s very common. A lot of people say 10% of the population, but I think it’s actually more than that. A lot of women are suffering, have symptoms and aren’t being diagnosed. So I’ve got with me Jen, who has got the most amazing social media account. Her Instagram is definitely worth following. She’s got quite a harrowing story as well, which has led her to have more fire in her belly to help more people. And I met her at an event in Cambridge where I’m a visiting fellow at Murray Edwards College in Cambridge. And she started talking to me about her own condition. And of course, I then started to quiz her about hormones, and the rest is history, as you say. So welcome Jen today. [00:01:58][107.7]

Jen Moore: [00:02:00] Hi, thank you for having me. [00:02:00][0.4]

Speaker 2: [00:02:01] So let’s just start with basics. What is endometriosis? [00:02:04][3.2]

Jen Moore: [00:02:06] So endometriosis is a full body condition where you have cells that are similar, but not the same, as the lining of the womb. And they are found in extrauterine sites and they can be anywhere in the body. It has actually been found on every single organ of the human body, even things like the eye, the bone, the belly button. You know, it can be absolutely anywhere. [00:02:27][21.2]

Dr Louise Newson: [00:02:28] It’s very interesting because I’ve been doing a lot of research and reading a lot about hysteria. And obviously the Greek word for womb is hystera and everything seems to be blaming women, but also because of our ‘wandering womb’ and thinking that if our womb could be kept in one place, the right place, we wouldn’t have all these symptoms. And a lot of ‘hysteria’ is hormonal changes. We know now. But also I wonder whether they were trying to describe a bit of endometriosis as well. And you know, when I was, learned a bit when I was a junior doctor by a gynaecologist, he said, oh some of the lining of the womb spills out through the fallopian tubes into the ovaries, and then it sort of wooshes around the body. And then is this sort of perception that it is bits of the lining of the womb that’s getting caught in the wrong place. And so it’s very interesting when you say it’s like the lining of the womb, you know there’s…so even just the definition shows we don’t know much about it because it’s a very vague definition, isn’t it really? [00:03:36][68.3]

Jen Moore: [00:03:37] Yeah. We don’t have a cure. We don’t know what causes it still. So it was first sort of discovered in 1860, 1861. But you are right. If you look back into kind of ancient Greek, even ancient Egyptian texts, there are symptoms that are very, very similar sounding to what we now know as endometriosis. But it wasn’t until 1860 it kind of became a thing and it was thought to be the lining of the womb that had, to use that gynaecologist’s beautiful description, spilled out. And for a long time the, I think it was in the 1920s, this theory of retrograde menstruation, which is what that gynaecologist was describing, where period blood flows back up through the fallopian tubes and into the body. And it was then thought that these little bits of the lining of the womb stuck themselves where they weren’t meant to be and acted like little mini periods each month. We now know that that is not true. We don’t know what causes it, but we’ve kind of ruled out certain theories. And the theory of retrograde menstruation, despite being debunked, is one of the most stubborn and persistent myths about endometriosis. There is this idea that it is just a uterine condition that has stuck with us and is affecting care today. But it’s I think it’s 90%, I think is the figure of women experienced retrograde menstruation but only 10% is the sort of established figure but we think it’s much higher really, have endometriosis. So there’s, you know, retrograde menstruation never really answered why endometriosis happened, why it happened in parts where it is physically impossible for that blood to flow to the brain, for example. You know, it’s quite hard to do that, but it is a real stubborn myth and it just won’t go away. And even today it still is hanging on in there unfortunately. [00:05:23][106.5]

Dr Louise Newson: [00:05:24] And it’s very interesting. I mean, it’s you know, I’m not a gynaecologist. And but when you read various texts and guidelines, they’ll talk about how to diagnose it. But actually there’s all these gold standards which we could do in an ideal world if we had unlimited resources, unlimited access to investigations. But actually, in medicine, we need to start with what are the symptoms before we even think about diagnosis. And a lot of the symptoms of endometriosis can be confused with other symptoms. But also women have also been, we’ve always been told, yeah, your periods will be heavy, your periods will be painful. It’s just, you know. What are these things? So then how do you know if you’ve got endometriosis or not? What are the most common symptoms? [00:06:08][43.9]

Jen Moore: [00:06:09] So this is where it does get confusing because a lot of the symptoms are period related and that’s because endometriosis is responding to hormonal changes in the body. It is not because it is acting like a mini period itself. So the most kind of common symptoms are things like very heavy, painful periods. Maybe they last longer than seven days. Maybe they’re very irregular. Maybe you’re in so much pain you were having to miss school or work or social activities. You know, over-the-counter medication isn’t helping all these things. But that doesn’t mean if you have a textbook period that you don’t have endometriosis, because I think it’s up to 30% of endometriosis patients are actually completely asymptomatic. And then you have all of the other symptoms that aren’t related to your period at all. It could be back pain, hip pain, flank pain. You could have chest pain. If you’ve got diaphragmatic endometriosis, for example, you’d have symptoms like that with to do with breathing. You could have urinary issues, bowel issues. There are so many symptoms. And I think that’s where the kind of misdiagnoses does happen. It’s partly because the symptoms can happen anywhere in the body, but it’s largely the misdiagnosis is happening because a this myth of that, it’s a period condition is persisting so much so it’s fobbed off as a either, you know, painful periods are normal. That’s what you should deal with. Or if your symptoms aren’t experienced around your periods, they may be there around ovulation or just in your luteal phase, for example, then it can’t possibly be endometriosis because it’s not to do with your period. So that’s where misdiagnosis also happens. And then also, we’re just not believing women. So when we come in and we say we have these symptoms, oh no, you can’t possibly you can’t have that, it doesn’t make sense. Or that’s not what I was taught or you’re too young or you’re too old or, you know, your pregnancy, you can’t, there’s… we’re just not believing women. We’re not being seen as reliable narrators of our own experience. And then so we’re getting misdiagnosed with, oh it must be IBS, it must be stress, It must just be dysmenorrhoea. [00:08:13][124.1]

Dr Louise Newson: [00:08:15] Yeah, I mean, we’ll talk about in a bit because that’s a huge problem with so much in medicine. I strongly think that. But if we think about endometriosis, of course our hormones, we see these nice graphs of how our hormones up in ovulation, come down and then go off in the luteal phase, the second half of the cycle. Progesterone especially gets very high, oestradiol increases and then drops off. But most women or many women have quite irregular periods. We don’t always ovulate every month. We don’t always have a 28-day cycle. And our hormones can change depending on whether we’re stressed, what time zone we’re in, what we’re eating, whether we’re exercising. No-one has really done proper studies on hormone levels in women. So with these are just like textbooks that, you know, we learned in the 70s at school, like we don’t really have progressed, so we don’t really know which hormone is more related to endometriosis. Is it because it’s raised oestrogen or is it because it’s low progesterone? Who knows? Because no one’s done the study. So if we think as doctors, someone might have endometriosis, what investigations? Because I’m talking to you about your, and I know you’re not a medical person, but you have probably more knowledge than most people. So just so the listeners know that you aren’t a doctor, but doesn’t matter because you have more lived experience being a patient who has, or a woman that has endometriosis, so, investigations, there are so many different investigations and some are easier to access than others. So in your experience, what investigations do people have? [00:09:52][97.1]

Jen Moore: [00:09:52] So ideally, the first one would be to listen, to listen, to ask questions and to believe the answers that they’re being told. Secondly, it would be to say, if you’re not sure as a physician to actually say that, to say, you know what, I’m not sure. Let me find out or let me find someone who will know and I can refer you to them. In terms of what happened with me, which mirrors an awful lot of others’ experience as well, is I was first sent for an ultrasound scan, both an internal and an external one, and that came back clear. So I was told no endometriosis, no further action needed. And unfortunately, endometriosis does not always show on scans. You can have a completely clear scan and still have stage four, very severe, endometriosis, which is what happened with me. And also we just are not…there’s not enough education on what to look for. If you don’t know what to look for, you’re not going to find it if you don’t know what you’re looking for. So then the next step is normally an MRI scan, and that does tend to show, especially if there’s any more deep infiltrating endometriosis as opposed to the superficial, also often shows up if there’s an endometrioma, which is a type of endometriosis that forms in the ovaries like a cyst. So an MRI can show it. But again, it doesn’t always show the full extent or at all. So currently, which I think is absolutely ridiculous, the official gold standard, like you said earlier, a way to diagnose endometriosis, is surgery. And I think that that is crazy that we are expecting potential and endometriosis patients to have to go through surgery to find answers. But that is currently the sort of definitive way to diagnose. But sadly, again, going back to education, there aren’t enough endometriosis specialists. So not all people performing these surgeries actually know what to look for. Endometriosis can have numerous different presentations. It can be different colours, it can be transparent, it can be anywhere in the body. And if you’re thinking, I need to look for a red lesion in or around the womb because that’s what you were taught at medical school, then you’re going to potentially miss a huge amount of disease and then that poor patient is still going to be in a huge, potentially a huge amount of pain, having infertility issues, huge ramifications. So we’re in a position where surgery is sort of promoted as the way to diagnose. But if it’s not being done by a true specialist, it’s not actually helpful for the patient. But I would say the people that are kind of most likely to see that patient first, it’s going to be primary care, it’s going to be GPs. So the first thing would be to absolutely listen and believe what you’re being told, even if it doesn’t quite fit with what you were taught at school, because endometriosis education at clinical school level is not the best, currently, if it exists at all. So yeah, it would be to believe what you’re hearing and then either find out or refer to somebody who will know. And I think it’s absolutely okay sometimes to say, do you know what, I’m not an expert in this. I don’t know. [00:13:11][198.9]

Dr Louise Newson: [00:13:12] Sure. And I think it’s very important. And it was one of the first things I learnt when I trained to be a GP as opposed to being a hospital physician because I’d done a lot of hospital work before. My trainer said Louise you’re going to be a terrible GP because you won’t be able to listen to patients and you won’t be able to deal with uncertainty because in hospital you want things very black and white. So you can label that patient with a diagnosis. And so he taught me really the art of uncertainty, which sounds a bit weird for a doctor, but it’s really important, in your limitations. But the other thing is, I think not everything has to have like a scan diagnosis or a surgery diagnosis or a biochemical diagnosis. Often in medicine, we were talking offline earlier about my daughter’s chronic migraine. She did have a brain scan at one stage to make sure she didn’t have something else going on. But a lot of migraine is in the history. It’s the talking, actually understanding pattern recognition. And so with endometriosis, often it’s the same. You don’t have to see it. You can take a really good history and work out what’s going on. And sometimes you might not know. But if I have someone sitting there in front of me who’s young who is having some dreadful period pain, some heavy periods, some abdominal bloating, some back pain, it might be ‘just’ in inverted commas, her hormones, it might be ‘just’ in inverted commas, endometriosis. It might be that she’s a bit stressed at school, or more likely it will be all three. But what I would do in the first instance is think about, well, are there hormonal changes, is there anything that I can do that will help? Because if she responds to first line treatment, we don’t need to rush and subject her to surgery to make a diagnosis, you know, and it’s doing it in a stepwise progression. Because if I say to every patient, you need to have surgery for an investigation, then I can’t give you any treatment until we’ve got the diagnosis. Well, there would be women left, right and centre in pain and discomfort. So it’s prioritising the right test for the right person and looking at which treatment is right. And it’s often a combination of treatments as well. [00:15:22][130.6]

Jen Moore: [00:15:23] And it’s splitting it as well into symptom management versus, you know, treating the disease because endometriosis has no cure. The best we have is the excision surgery with a skilled specialist. But that’s not accessible to everybody. And so then we do rely on symptom management to live and to, you know, get through the day. But unfortunately, a lot of what we know is symptom management is being portrayed as a cure, as a magic treatment that’s going to, you know, get rid of the disease. And just sadly, it’s not true. It can help with symptom management, of course, and that’s super important. But I think it’s that thing of informed consent isn’t it, and like knowing what you’re being prescribed or what you’re being told and being allowed to make that choice together, I think is really important. [00:16:11][47.9]

Dr Louise Newson: [00:16:11] Totally, totally agree. So just tell me briefly about your story, because you’ve had, I say briefly, because there’s been a lot, I know that. But tell me what you’re up to with your endometriosis, if you don’t mind, Jen. [00:16:25][14.0]

Jen Moore: [00:16:26] No, of course. So my first symptom was when I was 11, and it kind of kickstarted with my first period with those hormonal changes in my body and I didn’t know what to expect. It was my first period, but I was screaming on the floor of my parents’ bedroom. I couldn’t stand up straight. It was horrific. And for 22 years, I was back and forth, doctors trying to say how much pain I was in. And I was pretty much just put on the pill straight away. I was told, she’s just an unlucky one. She’s got painful periods, you know. Put her on the pill. It will sort it all out and it will settle down. And for 22 years, I would go back and say that I still am struggling. My periods are horrific, I can’t work during them. They’re getting worse each time as well, as well as all of the other symptoms. And for 22 years I was told no, that’s normal. Painful periods are part of being a woman, what makes you more special than half of this planet? And I got to a point where I started to believe that myself. I started to think, why can’t I deal with this the way all of the other people with periods are dealing with it? What’s wrong with me? And effectively start to gaslight myself until it was during lockdown in 2021. And I was reading a book and it was about hormones. And I was like, I have never actually experienced a natural, whatever natural means cycle. So I stopped the pill. I didn’t ask anyone. I just did it. I swear it was part of lockdown boredom. I just thought, let’s see what happens. And I’d say within two to three cycles, the symptoms that I was experiencing during my period for 22 years was every single day of the month. I was pretty much bedridden. My legs would collapse from underneath me, from hip pain. I was crawling from the bedroom to the bathroom, vomiting in pain, passing out from blood loss. It was absolutely horrific. And that’s what it took for a GP to finally say, okay, I think you need a scan and to cut a very long story short I had one surgery in May 2022, but that was not with an endometriosis specialist. But I thought, great, you know, somebody’s diagnosed me and believes me and he’s going to fix all of this. But unfortunately, the surgery was not ideal. A lot of disease was missed, including some that was putting both of my kidneys at risk. So less than a year after that surgery, I had another one where the endometriosis was removed from multiple organs all around my sort of pelvic and abdomen cavities. And I also had a hysterectomy for adenomyosis and fibroids at the same time as well. And that was just over a year ago now. And it’s been, a long recovery, a very long recovery. And unfortunately, I had an MRI six weeks ago, which is showing signs of endometriosis again. So it’s, yes, a lifelong journey, unfortunately. But what happens now? I’m not sure. I’m not sure. I need to to figure that one out. But it’s I think during that time I realised that this was so much bigger than me and endometriosis and adenomyosis as well, they’re very, very clever, they make you feel like you’re alone and that you’re the only one going through this and nobody else could possibly understand because you face those barriers time and time again, sometimes for decades of being told no, it’s basically in your head. You do start to become very inward and think that you’re alone. And so I set up an Instagram account during one of my surgical recoveries, and I realise that this is this is so much bigger than me and my experience. This is global and it’s millions of us that are all, obviously we have our own variations on the story, but we all have the same threads weaving through our experience. And it shocked me to…I just could not believe that this was a pattern. And I couldn’t understand why. Like, why are we still in this place? And we’ve not progressed with this disease since it was discovered. And it just, yeah, just blows my mind. [00:20:36][250.0]

Dr Louise Newson: [00:20:37] And one of the things that comes through time and time again from talking to you, but talking to many, many other women is like you said at the beginning, not being listened to, not being believed. And it’s really sad whether you’ve got endometriosis or any other condition that because it doesn’t fit into a diagnostic box, therefore you must be making it up. And there are lots of especially, I don’t know, more women than men, that it’s because of trauma. And I hear the word trauma more and more than I’ve ever heard before. And a lot of us have had traumatic backgrounds, but not all of us have endometriosis. Not all of us have clinical depression. Not all of us have PTSD, not all of us have fibromyalgia, all these conditions. So I find it really difficult when we label people because it fits into our narrative of doctors, because it makes us feel easier, because it makes it justifiable that this person sitting in front of us has got this condition. But there’s much that we don’t know. And, you know, I’ve learned so much over the last eight years of running a menopause clinic. And that’s partly and I hate to say this, it’s partly because I’ve had a lot more time with people. I have longer appointments, so I can ask more questions. Because when you were running late as a GP and you’ve only got ten minutes and you’ve got someone who’s complicated with a myriad of symptoms, it’s really difficult. It’s really hard to tease out what’s the most relevant and actually what’s the most relevant to them is not the same as what’s the most important for me to make the diagnosis. And then that makes it really difficult because if you aren’t listened to, you do then think it’s in your head. You do think you’re making this up. And I’ve only had, I’ve been fortunate, it’s relative word that it was only once that I was really gaslit after I’d had pancreatitis. I was ill for about four months and I really I couldn’t. I had a lot of pain and discomfort, a lot of heartburn, a lot of epigastric, pain at the top of my abdomen. And I was seeing a specialist pancreatitis doctor in a teaching hospital. And I went and I started crying and I said, I can’t carry on this. I can’t do yoga because I can’t do a headstand. I can’t even empty the dishwasher because bending down makes you feel awful. I’m really worried. Something’s going on. And he examined me and he said, I think you need some antidepressants. And I didn’t know whether to cry or to hit him. And I, I was really shocked. And then I went and saw a surgeon who I know who’s got no bedside manner. He’s actually quite a bit rude. It doesn’t matter. He’s a really good surgeon. And he said, Louise, I’m going to take your gallbladder out, I think it’s your gallbladder that’s playing up. He took it out, the day after I skipped literally out of hospital and I haven’t looked back. But, you know, I know who to see. I’m quite forthright with my…but I lay there and I’d obviously stripped off so he could examine me. I was very vulnerable. And to be told that maybe I’m depressed or maybe I’ve got irritable bowel, I knew I didn’t. And that sounds quite trivial compared to the pain of endometriosis, but I just lay there thinking I haven’t been listened to. And that’s what you’re hearing through your social media and anyone that follows, it’s not just you. It’s not just a few people. It’s not just in the UK. And I think this lack of being listened to means that we’re not advancing in science, we’re not doing the right studies, we’re not asking the right questions, we’re not getting the right answers. And more and more, when I speak to people who’ve got endometriosis, they have layers of treatment, so they’ve often had multiple surgeries like you, which may or may not have helped. But then they’re also given painkillers, which may or may not help, but then they turn into other sort of stronger, like nerve type painkiller drugs like pregabalin and gabapentin. And, you know, you’ve got some experience taking some of those, haven’t you? [00:24:36][238.9]

Jen Moore: [00:24:38] Yeah. It was after my first surgery, the surgeon, I went back to him and I said, I’m still in a lot of pain. I’m still having the same type of pain as well. And he instantly dismissed it. And he genuinely said to me, look Jen, I’m the surgeon. I went to medical school. I think what you’re experiencing now is a little bit psychosomatic. So he said, Let’s get you some therapy and let’s be aggressive with your pain medication. And he doubled my pain medication overnight on pregabalin and codeine. And it just, I became a zombie. I was a complete zombie of a person. I was, just as bedbound as I was from the pain, just from being numbed. And it’s just hysteria with another name. You know, you can trace hysteria throughout history and all it’s doing, I think it was removed only in the last 50 years from the kind of diagnostic manuals. [00:25:33][55.0]

Dr Louise Newson: [00:25:34] 1980. [00:25:34][0.0]

Jen Moore: [00:25:35] But still. Yeah, you go 40 years, but it’s still there, it’s shadow. We are still living in the shadow, but it is so vast we don’t even realise it’s there sometimes and it’s everywhere. It’s not just endometriosis, it’s not just, and it’s our whole lives. It’s when a girl goes because she’s having stomach pain and she’s told, it’s just your periods or it’s right up at the other end of life when you know you’ve gone through menopause and you’re still experiencing endometriosis symptoms and you’re told it can’t possibly be endometriosis because you’ve gone through the menopause that cures it, which we know it does it. And it’s just infuriating. [00:26:13][37.0]

Dr Louise Newson: [00:26:13] Absolutely. And I totally agree. And you know, I started being more of a menopause specialist, but now I feel like I’m more of a hormone specialist and thinking about our hormones of being biologically active throughout our own body. So it’s not just our ovaries that produce what them, obviously our brain produces our adrenal glands. Even our heart produces oestradiol like the really important hormones that the balance can really change. And increasingly I see and speak to women who have endometriosis. They also have fibroids. They might have been diagnosed with polycystic ovarian syndrome, and there’s this big overlap. But what’s going on is there’s a lot of inflammation in the body, and inflammation can occur for lots of reasons. And so people can have inflammatory diets, as you know. But if you’re feeling rubbish you’re more likely to have, well not you, but one is more likely to have, you know, rubbish food because it can make you feel better, but then that can increase inflammation in the body. But our hormones, if we don’t have them, are very, there’s a lot more inflammation in our body because our hormones are very anti-inflammatory. But because people are so scared of oestrogen, because oestrogen can stimulate the lining of the womb, it can often stimulate endometriosis. People are forgetting about the anti-inflammatory effects of testosterone, progesterone. We’ve got other hormones in our body that no one seems to be researching at all, like DHEA or…They’re just sort of forgotten hormones. But how much of those are relevant to endometriosis? We don’t know. [00:27:41][87.5]

Jen Moore: [00:27:41] The truth is, we don’t know, no. [00:27:43][1.3]

Dr Louise Newson: [00:27:43] Absolutely. I’m mean we’re all different, but you had a hysterectomy, so and if your ovaries, were they removed as well? [00:27:50][7.5]

Jen Moore: [00:27:51] So they kept my ovaries. Obviously they have huge benefits for not just ovulation, so they were preserved. Thankfully, not many people get the option. But I was warned that they had obviously been through quite a trauma because I did have these ovarian endometriomas as well that had to be removed, so whilst we tried to preserve them, I was warned that, you know, they could slow down quicker than usual, potentially within the next couple of years, they could just decide to give up. And I was given this sort of list of things to look out for and to go to the GP if I was experiencing them for some help. And I kind of looked at this list, I dug it out of my medical notes one day and I was like, God, I’m experiencing all of these. So I went to the GP and I was basically laughed out of the room. I was told, it’s impossible, absolutely impossible for you to be feeling like this if you’ve got your ovaries still. And I said, my surgeon told me that there’s because of the trauma of the endometriosis and then the surgery itself, there’s a really good chance that they’re going to be a bit grumpy and either not perform as well or completely give up. And they said it’s really frustrating when surgeons give people these kind of information sheets because then people start looking for things that aren’t there. And I was sent home and those symptoms persisted and got arguably worse until I met you and understood about hormones a little bit more. But again, you were the first one that believed that there could even be a correlation. Up until then, it was just No, don’t be ridiculous. You’re just, you’re being dramatic, basically. Again, hysteria with another name. [00:29:33][102.5]

Dr Louise Newson: [00:29:35] It’s so sad. And you’ve given me permission to say that, you know, you’re using testosterone and some progesterone. And I’ve been quite open with you. I don’t know if it’s going to make a difference to your endometriosis. It might reduce some of the activity and the inflammation that’s occurring, but it might help other symptoms. And you’ve said already, haven’t you, that you have noticed your energy levels have improved? [00:29:56][21.3]

Jen Moore: [00:29:57] Yeah, I actually feel human. Not every day and not all day every day. Cos, you know, there’s still a lot going on in there. But the difference and I think testosterone was the biggest eyeopener for me because I’ve always heard of testosterone in the realms of either steroids in the gym, like muscular, like masculine energy aggression or sex drive. And those weren’t things that were really on my radar. But when you started explaining, actually, it’s so much more than that. And as women, we produce it ourselves anyway, and it’s a vital hormone. It’s the energy. The clarity in my brain suddenly changed. It was, it was night and day with certain symptoms. Not all of them. I’ll be, you know, I obviously don’t want to mislead anything, but yeah, it was definitely energy. My excite…I don’t know what the word for this is. I, I can think of it in French like that joie de vivre that, you know, that appetite for life. I started to be excited about my life again. Whereas before I just I was in this fog and I don’t know whether it was the ridiculous amount of pain medication I was on. I don’t know whether it was just mental health effects of everything that was happening. I don’t know whether it was the lack of hormones that were in my body. I don’t know what it was. But before I was just in this black cloud and I could not see a life beyond pain. Whereas once I started with the testosterone and the progesterone, like I say, I got excited to live my life again in a different way. Obviously, this has changed my life and it’s altered so many things for me, but I could start to see a future again that I wanted to be a part of. And that to me is the biggest bonus that I could possibly ask for because I thought that was it. I thought that was my life. I thought it was just going to be pain and bed and that was it. [00:31:52][114.2]

Dr Louise Newson: [00:31:52] And that’s so important. It’s very hard to quantify people’s happiness or joie de vivre to be in a study, in a trial. But actually, day to day, we hear it all the time. And it’s so important. You know, I can’t wave a magic wand and change people’s past lives. I can’t change their future lives. I can’t change, you know, any diseases necessarily, but actually enabling the brain and body to work better with having natural hormones back is not a bad thing. And we need to remember that. The other thing just before we finish is that one of the treatments is often given to women who’ve got endometriosis is injections to suppress hormones. So something like zoladex which will switch off one of the hormones in the brain, which means that the ovarian hormones, oestrogen, but also progesterone and testosterone flatline. So it’s basically making someone menopausal and people do that because the fluctuations of hormones trigger endometriosis like we said, but it can really affect people mentally and physically. So increasingly we do give back hormones, but we give them back at the right dose and type to them and give them back individually. So some people are given a combination synthetic hormone replacement, which in my vast clinical experience isn’t going to help and it might cause more inflammation because synthetic hormones are very inflammatory and giving the contraceptive pill can be very inflammatory as well for people with endometriosis. So the most natural thing is to just replace natural hormones in a low-ish dose. And some people don’t need oestrogen, they might only need testosterone and progesterone, or they might just need progesterone, we’re all different. But anyone who’s listening, who has had any of the injections, you should certainly be talking about having some add back hormones as well. [00:33:42][109.7]

Jen Moore: [00:33:44] Yeah and unfortunately, a lot of the kind of treatments, again, it’s separating symptom management and disease treatment, you know, treating pain and treating symptoms is not actually treating disease. And unfortunately, again, that lingering myth that this is a period condition, therefore it then follows through that, the way to do that is to shut off the menstrual cycle, shut down those hormones, and that will cure it. And we just know, again, it’s it’s just not the case and things like this, although they can work for symptom management for some people. Some people it has been a life changer for them. But for others, there have been some, you know, side effects that they just were not expecting. And, it’s, the disease has still progressed underneath. So, yeah, it’s again, getting the definition, until we get the definition right nothing else that follows will be right. [00:34:29][44.9]

Dr Louise Newson: [00:34:29] Absolutely. So I think the take home is that we are all different. And even if we have 100 people in a room with endometriosis, they would all have different levels, different types, different inflammation, different symptoms, and they’re different individuals as well. So they need to be treated as such. So I’m very grateful for your time and I’m really empowered by your work because I know it’s helping so many people just so that they know they have a voice, too. So keep going with what you’re doing. But before I end I just would like three take home tips. I know they’ll be people listening to this who have endometriosis. I know they’ll be people who’ve got friends, family members with endometriosis. What are the three things that they can do to make a difference for their future health when they’ve got endo? [00:35:16][46.2]

Jen Moore: [00:35:18] Find a specialist. I wish I knew the importance of a true specialist in this condition right at the start. So really, you know, find somebody, ask them as many questions as you want, because if they are genuinely a specialist, they will not be afraid of answering questions. So, yeah, find a specialist is number one. Number two is don’t feel like you have to do it alone. You have your medical team, which is super important, but you also need a team outside of the doctors outside of the hospital. And it doesn’t matter who it is, but just find somebody so that you’re not doing this alone. And there are so many of us, even if it’s somebody online, like just reach out because we know what you’re going through. And there’s so many of us that are just happy to help, even if it’s just to talk through stuff. And my third one would be. That’s a hard one to just pick three. I think my third one would be keep going. So a lot of us think when you get your diagnosis there’s some magic wand that suddenly is going to change everything. And that’s just the start of it. The average diagnosis time is nine years now in the UK and you kind of get your diagnosis and you’re like yes, everything’s going to change. Awesome. And then you realise actually you’ve got this monumental wait list to get treatment and to try, you know, it’s a long, long slog. But keep going and keep using your voice. And don’t let anybody tell you that it’s not as bad as you think it is because you’re the one living with it and you’re the expert in your own body. And yeah, just. Just keep going. It’s exhausting, but it’s important that we do. [00:36:54][96.9]

Dr Louise Newson: [00:36:55] So important. And the fact of you being an expert in your own bodies is important with everything. [00:37:01][5.6]

Jen Moore: [00:37:02] Yes. [00:37:02][0.0]

Dr Louise Newson: [00:37:02] All of us are experts. We know how we live. We know what we’re feeling. So thank you so much, Jen and I look forward to seeing where your work takes you as well. But it’s brilliant, thank you. [00:37:11][9.4]

Jen Moore: [00:37:11] Thank you. [00:37:12][0.9]

Dr Louise Newson: [00:37:17] You can find out more about Newson Health Group by visiting www.newsonhealth.co.uk and you can download the free balance app on the App Store or Google Play.