283 - Hormonal changes and endometriosis: busting myths and seeking help
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November 19, 2024
TLDR: Jen Moore, a campaigner for endometriosis awareness, shares three tips for women suffering from the condition: (1) Find a specialist to ask questions, (2) don't feel alone-seek support within and outside the medical team, (3) persist in seeking treatment despite long waits.
In episode 283 of the podcast, Dr. Louise Newson interviews Jen Moore, a campaigner who passionately advocates for awareness about endometriosis and adenomyosis. This episode dives into the complexities of endometriosis, addressing myths, symptoms, and important takeaways for those suffering from the condition.
Jen's Personal Journey with Endometriosis
Jen shares her powerful journey with endometriosis, which began at the tender age of 11. It took Jen 22 years and multiple medical appointments before receiving a definitive diagnosis. By this point, her health had deteriorated to the extent that she faced risks such as organ failure, leading to several major surgeries, including a hysterectomy.
Key Lessons from Jen’s Experience
Jen emphasizes three key actions for women with endometriosis to improve their future health:
- Find a Specialist: Seek a healthcare provider who specializes in endometriosis and is willing to answer all your questions.
- Don’t Go It Alone: Build a support network outside the medical system, whether it’s friends, family, or online communities.
- Persevere: Understand that obtaining a diagnosis is just the beginning of a long journey that may involve wait lists and ongoing treatments.
What is Endometriosis?
Dr. Newson and Jen discuss endometriosis as a full-body condition where cells similar to the lining of the womb are found in places other than the uterus. These misplaced cells can cause pain and a myriad of symptoms that may not always be related to menstrual cycles.
Common Symptoms
- Heavy and painful periods
- Back or pelvic pain
- Gastrointestinal issues and urinary problems
- Potentially asymptomatic cases (up to 30% of sufferers)
Debunking the Myths Surrounding Endometriosis
Contrary to popular belief, the notion that endometriosis primarily affects menstrual cycles is a stubborn myth. Dr. Newson highlights the prevalent misdiagnosis stemming from:
- Confusion between typical period symptoms and endometriosis
- The historical belief that painful periods are a normal aspect of menstruation
Dr. Newson also points out that over 90% of women may experience retrograde menstruation, but only a fraction of them have endometriosis. The persistent myth can lead to long, unproductive periods of diagnosis.
The Role of Hormones in Endometriosis
Endometriosis symptoms are heavily influenced by hormonal fluctuations. However, there remains a lack of comprehensive research to clarify the exact hormonal components involved in the condition.
What Treatments Are Available?
The podcast touches on the challenges of treatment accessibility, with many women reliant on pain management rather than disease treatment. The conversation encourages:
- Proper education of healthcare providers about endometriosis
- Awareness that not all endometriosis cases will show up on scans; many women receive initial clear results even when experiencing severe symptoms.
Practical Advice for Patients
Dr. Newson often advises an approach that prioritizes symptom management over invasive procedures. Understanding and discussing hormonal impacts, including options for testosterone and progesterone therapy, can significantly help those suffering from endometriosis.
Lasting Insights
- Listening and Believing: One of the most important things healthcare providers can do is genuinely listen and validate their patients’ experiences.
- Individualized Treatments: Each woman’s experience with endometriosis is unique, requiring personalized treatment plans.
Conclusion
This episode emphasizes the critical importance of advocacy, education, and support for women dealing with endometriosis. As Jen Moore motivates, being an expert of your own body and continuously seeking knowledge and assistance can lead to better health outcomes. For those affected, connecting with specialists and establishing a support system are essential steps in managing their journey with endometriosis.
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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 individualized perimenopause and menopause care for all women.
I'm very excited on 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, hairy menopause or endometriosis and it's shocking because it's very common. A lot of people say
10% of the population, 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 as an event in Cambridge where I'm a visiting bellow at Murray Edwards College in Cambridge. And she was 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 to today. Hi, thank you for having me. Let's just start with basics. What is endometriosis?
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 extra uterine 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.
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 history and everything seems to be blaming women but also because of our wandering wound 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 gynecologist, he said, Oh, some of the lining of the womb spills out through the floating tubes and to the ovaries. And then it sort of washes around the bud. Yeah. And there is this sort of perception that it is bits of the lining of the womb that's getting caught in the wrong place.
Yeah. And so it's very interesting when you say it's like the normal of the, you know, this. Yeah. So even just the definition shows we don't know much about it because it's very vague definition, isn't it really? 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
a very, very similar sounding to what we now know as endometriosis. But it wasn't until 1860 that it kind of became a thing. And it was thought to be the lining of the womb that had to use that gynecologist's beautiful description spilled out. And for a long time, I think it was in the 1920s, this theory of retrograde menstruation, which is what that gynecologist was describing.
where period blood flows back up through the floating 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 it's the figure of women experience retrograde menstruation, but only 10% is this 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 was hanging on in there, unfortunately.
It's very interesting, as you know, I'm not a gynecologist, 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, with all women, told, yeah, your periods will be heavy. Your periods will be painful. It's just, you know, one of those things. So then how do you know if you've got endometriosis or not? Like, what are the most common symptoms?
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 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're having to miss school or work or social activities, you know, Paris 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 a 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 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 misdiagnosis does happen.
It's partly because the symptoms can happen anywhere in the body, but it's largely the misdiagnosis is happening because this myth of that it's a period condition is persisting so much. So it's forbed off as a just either you know, painful periods are normal. That's what you should deal with.
or if your symptoms aren't experienced around your period, so maybe they're 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 or eat this. 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 this scenario.
Yeah. I mean, we'll talk about that today because that's a huge problem with so much in medicine, I strongly think. But if we think about endometries, of course our hormones, we see these nice graphs of how our hormones go up in ovulation, come down, and then go up in the luteal phase a second, half of the cycle, progesterone, especially gets very high, Easter down, increases, and then drops off. But most women, or many women, have quite a regular period. 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 we learned in the 70s at school, like we don't really have
progress, so we don't really know which hormone is more related to endometriosis. Is it because it's raised estrogen 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 that listeners know that you aren't a doctor, doesn't matter. You have more lived experience being a patient who has a woman that has endometriosis. So investigations, there are so many different investigations and some are easy to access than others.
Yeah, in your experience, what investigations do people have? 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 position, to actually say that, to say, do 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, 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. It also often shows up if there's an endometrioma, which is a type of endometriosis that forms in the ovaries like a cyst.
So in MRI, I 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, way to diagnose endometriosis is surgery. And I think that that is crazy that we are expecting potential 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 colors. It can be transparent. It can be anywhere in the body. And if you're thinking, oh, 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 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. Sure and I think it's very important and it was one of the first things I learned when I chained to be a GP as opposed to being a hospital physician because I'd done a lot of hospital work before. My trainer said, Luigi, you're going to be in terrible GP because you won't be able to listen to patients and you won't be able to deal with uncertainty because in a 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 like migraine is in the history, it's the talking, it's the understanding, cat and recognition. And so within Demetriasis, 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 pains, some heavy periods, some abdominal bloating, some back pain, it might be just an inverted commas, her hormones, it might be just an inverted commas, endemic juices.
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 to 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 a Russian subjector 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 and I can't give you any treatment until we've got the diagnosis. Well, there'll be women left, right and center in pain and discomfort. So it's prioritizing the right test for the right person and looking at which treatment is right. And it's often a combination of treatments as well.
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
get rid of the disease, and it's just sadly it's not true. It can help with the management of course, and that's super important, but I think it's that thing of informed consent, isn't it, and knowing what you're being prescribed or what you're being told and being allowed to make that choice together.
I think it's really important. 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 where you're up to with your endometries if you don't mind, Jen.
No, of course. So my first symptoms when I was 11, and it kind of kick started 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 for 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, Oh, 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, look, 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 apart 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 started 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, oh, 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 thought i swear it was a bit of lockdown boredom i just thought oh 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 and 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. The 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 endometriosis was removed from multiple organs all around my pelvic and abdomen cavities. 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 a lifelong journey, unfortunately. But what happens now? I'm not sure. I'm not sure I need to figure that one out. But it's, I think during that time,
I realized 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've faced 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 realized 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. Did it just, yeah, it just blows my mind. 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 endometries or any other condition, that because it doesn't fit into a diagnostic box, therefore you must be making it out. And there are a lot of, especially, I don't know, more women than men, that it's because of trauma.
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 hasn't got this condition.
But there's so much that we don't know, and I've learnt so much over the last eight years of running a medical 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're running late as a GP and you've only got 10 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 to me to make the diagnosis. And then that makes it really difficult because if you aren't listened to, do you do then think it's in your head? Do you do think you're making it up?
And I've only had, I've been fortunate, it's a relative word, that it was only once that I was really gathlete after I'd had pancreatitis, I was ill for about four months.
And I really, I couldn't have a lot of pain, a lot of 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. I said, 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 when something's going on. And he examined me and he said, I think you need some antidepressant.
and i didn't know there's a cry or two hits him and i i was really shocked and then i went and saw a surgeon who i know who's got no bedside man i know he's 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 a 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 a forthright with my, but I lay there, and I'd obviously stripped off because 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 end-to-week juices, but I don't at all. I just lay there thinking, I haven't been listened to, and that's what your hearing's for 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 think people have got intermediate tutors, they have layers of treatments that 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're turning to other sort of stronger like nerve type pain killer drugs like prokabalin and gamapentin. And you've got some experience of taking some of those, haven't you? 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, Dan, 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 Pragablin and coding.
And it just 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 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. But it's still there. Like, yeah, there you go, 40 years.
But it's still there. It's shadow. We are still living in this shadow, but it is so vast. We don't even realize 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, oh, it's just your periods. Or it's right up at the other end of life when you've gone through menopause and you're still experiencing endometriosis symptoms and you're trying to possibly be endometriosis because you've gone through the menopause that cures it, which we know it doesn't.
And it's just infuriating. Absolutely. And I totally agree. And I started being more of a menopause specialist, but now I feel like I'm more of a hormones specialist. And thinking about our hormones are being biologically active throughout our own body. So it's not just our ovaries that produce them.
Obviously our brain produces them, our adrenal glands, even our heart produces Easter dial. They're really important always, but 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 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, there's a lot of more inflammation in our body because our hormones are very anti-inflammatory. But because people are so scared of estrogen, because estrogen can stimulate the lining of the wound,
it can often simulate 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 Pragabalan. They're just sort of forgotten hormones, but how much of those are relevant with endometriosis?
We don't know. We don't know. No. Absolutely. And we're all different, but you have a history. And if your ovaries, were they removed as well? So they kept my ovaries. Obviously, they have huge benefits for not just population. So they were preserved, thankfully, not many people get the auction. But I was warned that they
I had obviously been through quite a trauma because I did have these ovarian endometriomas as well that had to be removed. Whilst we tried to preserve them, I was warned that 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 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, Oh God, that you have, I'm experiencing all of these. So I went to the GP and I was basically laughed at the room. I was told it's impossible.
It's absolutely impossible for you to be feeling like this if you've got your ovaries still. And I said, my surgeon told me that 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'll just
You're being dramatic, basically. Again, hysteria with another name. It's so sad, and you've given me permission to say that 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 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? Yeah, I actually feel human.
Not every day and not all day every day because there's still a lot going on in there. But the difference, and I think testosterone was the biggest eye opener 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 that 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 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.
Excite. I don't know what the word for this is. I think of it in French like that, Joanna Viv, 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 going 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 pedestrian.
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. And that's so important. It's very hard to quantify people's happiness or joy to be in a study in the trial.
But actually, day to day, we hear it all the time, and it's so important. I can't wave a magic wand and change people's past lives. I can't change their future lives. I can't change any diseases necessarily. But actually, enabling
the brain and body to work better with having natural hormones, that is not a bad thing. And we need to remember that. The other thing just before we finish is that one of the treatments that's often given to women who've got endometriosis is injections to suppress hormones. There's something like zodidex, which will switch us off one of the hormones in the brain, which means that the ovarian hormones, estrogen, but also progesterone and testosterone, flat line. So it's basically making someone men a puzzle.
And people do that because the fluctuations of hormones could trigger endometries is likely set.
But it can really affect people mentally and physically. Increasingly, we do give back hormones, but we give them back at the right dose and type to them and give them back individually. Some people are given a combination synthetic hormone replacement, which in my vast chemical experience, isn't going to help. It might cause more inflammation because synthetic hormones are very inflammatory.
giving the contraceptive pill can be very inflammatory as well for people with endometriosis. So the most natural thing is to disreplace natural hormones in their lowest dose and some people don't need these to do and 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 ad back hormones as well. 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, oh, 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 just not the case. And things like this, 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 side effects that they just were not expecting, and the disease is still progressed underneath. So, yeah, it's again getting the definition, until we get the definition right, nothing else that follows will be right. Absolutely. So I think the take home is with that. We are all
different. And even if we have 100 people in the room with endomete juices, they will all have different levels, different times, 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 impaired 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, what you're doing. But for right. And I just would like to retake your tips.
I know there'll be people listening to this who have endometriosis. I know there'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 house when they've got endo? 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 the talk-through stuff you know and my third one would be
That's a hard one to just fit through. But 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. So important. And the fact of you being an expert in your own bodies is important with everything.
Yes. All of us are experts. We know how we live. We know what we're feeling. So thank you so much, Dan. And look forward to seeing where your work takes you as well. But it's brilliant. Thank you. Thank you. 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.
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