What would you do if your period was so painful that you would faint when you were on the toilet? This was the dilemma Lexi Elven, my guest on today’s episode of Period Story faced for 8 years.
In this episode, Lexi shares:
- Why she turned to Reddit to help her understand why she was in so much pain that she would faint during the first two days of her period
- The phrase two GPs on an endometriosis Reddit forum told her to say to her doctor, which helped put her on a diagnosis pathway
- How a second opinion led to her receiving a bowel endometriosis diagnosis after 8 years
- How yoga has been a helpful tool to manage endometriosis symptoms
- And of course, the story of her first period
Lexi says that if you’re in a similar situation, it’s important to try and persevere if you feel lost and not to let embarrassment stop you from seeking help.
Thank you, Lexi!
Lexi’s Bio
Lexi Elven is a motion graphics designer and yoga teacher who founded Blithe Yoga in 2016 as a cosy yoga supper club in her living room in East London. Blithe then grew into a warm community studio space in Stratford with a simple intention to make yoga accessible, affordable, and inclusive for every body.
In 2025 Blithe Yoga became a Community Interest Company (CIC), and Blithe Yoga continues to serve the Stratford community with high-quality teaching rooted in accessibility and diversity. Expanding their offerings through yoga courses, workshops, and special events, all designed to nurture connection, wellbeing, and joy.
Get in touch with Lexi:
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SHOW TRANSCRIPT
Le’Nise Brothers: Hi Lexi. Thank you so much for coming onto the show. Let’s get started with me asking you the question that I start each episode with, which is tell us the story of your first period.
Lexi Elven: Thank you for having me.
This is such an interesting question because I really haven’t thought about it until you asked. So I am half Chinese. I grew up in Hong Kong. I actually went to an international school and we did get some period information in the school, but it was very full of untruths, like tampons break your hymen.
And there was definitely an implication or an insinuation that you don’t really want to go down the tampon route, like we would prefer you to go down the pad route. So there was already this kind of slightly shamey culture around that. And I was probably around 10 or 11 when that talk happened. And it was very much, girls were separated from the boys and I was in year six, so the very last year of my primary school.
And when I got my first period, I was sort of prepared in the sense that I knew it was going to happen. I think I was one of the first girls in our year to get it. So it, it wasn’t like I had friends to talk to about it. And my mum, at the time worked as a producer in advertising and on Sundays she very much gets a lie-in.
There is like a do not wake mum up on a Sunday. And I got my period on a Sunday and I remember being like, what do I do? Do I wake mummy up? I needed to, I needed to tell her. ’cause um, she’s a single working mum so I had no one else to speak to. And I very gently knocked on the door and I just said, mummy, something’s happened.
And immediately she like leapt out of bed. She knew exactly what I was talking about. She had a bag prepared with pads in it and she just gave me one and just said, do you know what to do? And because I did go to this class, I was like, yeah, of course I know what to do. And I bring that up because actually because my mum is Chinese, there’s been a lot of stuff culturally where as a third culture kid, there’s a lot of stuff we don’t really talk about.
And she never sat me down and had the period talk or any of that. That was very much a school thing. But the fact that she had prepared this bag was a lot of care. Like she was preparing for it. And I quite often say as a mixed kid, sometimes your Asian mums will surprise you. And this was like a, like a thing.
I actually remember like, oh, it actually surprised me in a good way. ’cause I was expecting to be like told off. ’cause she was sleeping in, she’d been working hard, but actually she was so on it. And I, I did think of that like, oh, that’s actually really nice thing that happened because my mum, when she got her period, it was a very different thing.
My Chinese grandmother, she was lovely, I loved her, but her knowledge of sex and periods was not based in truth or science. So when my mum got her period, she was very shamed. And there was a Chinese phrase that was used, which is not a nice phrase. It was , which is like serves you right. As in it was a bad thing.
Like, oh, you are now cursed, serves you right.
Le’Nise Brothers: Right.
Lexi Elven: And that’s really quite shocking, right? But that I think goes to show how much that has changed in two generations. And I don’t have daughters, I have two sons now, but I do teach my sons about period. You know, when they come into the bathroom with me, they have to see me deal with it and so they’re very much aware of it. And sometimes they’ll just be like, mummy, are you on your period? Like, are you okay? Like, are you bleeding? And, and I think that’s really important. So it has shifted, but there’s been some really interesting cultural things that may, this question made me think about, which I never really thought about.
So yeah, that’s my memory.
Le’Nise Brothers: Can you say more about, you use this phrase, third culture?
Lexi Elven: Yeah.
Le’Nise Brothers: Can you for listeners who might not be familiar with the term, can you say what that is?
Lexi Elven: So, third culture, kids, to my understanding and how I identify in it, are people who straddle multiple worlds.
And we are in this liminal space where we are recognised by each other, but maybe not so much by the two cultures that we represent. So I am half white, half Chinese. I grew up in Hong Kong. I very much feel culturally Chinese, but Chinese people may not recognise me as being fully Chinese, but when I’m in the West, people only see me as Asian.
So you sit in this liminal space between two cultures or multiple, if you are from multiple cultures where you understand and can translate between these two cultures, but you sit in a space where they may not see you. So I guess third culture kids, we always seek each other and there’s, and thanks to Instagram there is a lot of visibility.
So now we have the term wasian, which we never had when I was growing up, and blasian, which again, so cool lots of social media sort of groups and gatherings and communities are really existing now. And even now I can spot like a wasian from a hundred metres. Like we know each other, uh, we can see each other and there’s often a look like we know we’re mixed.
And yeah, it’s, it’s kind of fun. I, I’m friends with a lot of mums who are also mixed cultures, mixed Asian, mixed white. And I think it’s ’cause we’re raising that next generation of children who identify in this third culture space as well. So yeah, that’s how I would define third culture kid.
Le’Nise Brothers: Yeah. That’s so interesting. And you talked a lot about culture, so the effect that cultural beliefs had on your grandmother, your mother, and then what you were taught. And what’s interesting now is that you see a lot of people, especially on social media, talking about traditional Chinese medicine and using those cultural insights and medicinal insights as a route to have a better menstrual experience.
Can you talk a little bit about the things that you’ve had to unlearn. Cultural beliefs that you know now are false? So you mentioned one earlier, is there anything else that you’ve had to unpick as you’ve gotten older?
Lexi Elven: This is a funny question ’cause we also enter into this area where there is this weird thing on social media now where people who aren’t Chinese are saying like, I’m in a very Chinese time in my life.
Le’Nise Brothers: Yeah.
Lexi Elven: And all of us are like, what? Like we’re not, we’re not really, are you sure is? I’m not sure the hot water only is the thing that classifies it. I can only speak about some of the untruths that my grandmother really spoke about. And at the time, even when I was in school, I’m like, that’s not right.
So for instance, there was a lot of pressure for women to have a son. ’cause we have a culture where the boys have preference. And my grandmother definitely had a favourite child who was a son. And so I think there was that general feeling like the women or the daughters were not as important, but in our culture, they’re also the carers.
So they’re doing most of the care. And I, and because I was raised in a single parent household, I was raised by my mum who was this phenomenal, like, hardworking woman. A lot of those myths were, you know, quite apparently false to me. And a lot of the myths were like if you had a daughter shock, that was your, your fault.
Like you were incapable of producing a son. And of course we now know that’s nothing to do with the woman that is very much down to the, the sperm on the side of however the baby was made. So it’s, it’s really not the fault of the mum and or the person birthing. It’s very much down to science, which really wasn’t explained back then because as far as they were concerned, the baby was grown in the women.
And how the baby turned out was very much whatever happened inside the body. So there was a lot of false sciences in that. I still drank a mixture of red dates. They’re also called jujubes and goji berries, which is translating goji berries and longan. So it’s like three types of fruit and in a combination that can help soothe period pain and soothe cramps.
And actually it’s a mixture that I drank after I gave birth. Um, my mother did confinement with me. So if you don’t know, confinement is the Chinese practice, which is also known as zuò yuè zi or the sitting month. And when I was pregnant with my first child, I called my mum who was in Hong Kong at the time.
I was in London. And I said, would you like to do confinement with me? And I thought it would just be the confinement that her mum had where her mum, I was born in Singapore. My mum was working in advertising at the time, so that’s where I was. And my grandmother flew out to Singapore and just prepared some traditional medicines and typical soups that she was prepared.
So this is like grandmother’s, mothers passing down that tradition. And I thought it would be like that, but mum actually had an experience where my grandmother prepared something which was traditional, but the birth that she had, it wasn’t actually suitable. And she had she had a cut in her body and the doctor who was Singaporean Chinese specifically said to her, do not have this traditional Chinese soup.
This will actually make your healing worse. So they’re very, they were aware of it. It wasn’t like they, they didn’t know about the custom of postnatal care, but my grandmother prepared it anyway and just didn’t believe the doctors. And my mum started to swell, and she talks about this story because my grandmother cried.
She was like, oh no, I’ve done this to my daughter. And she was thinking she was preparing this healing soup and it just didn’t do what was intended for my mum. And this is a wider question of actually traditional Chinese medicine or Ayurveda, whatever traditional forms of medicine you choose, these are.
Very difficult things. You have to study them for very, very many years. We literally think of them as our herbalists and doctors, and you have to take a whole degree in it. And it takes many, many years. And sometimes what you just see is a recipe online like, oh, this will work. It might not work. Because according to my births that I had, which were very different, I had to have different solutions for the births that I had.
And I think because my mum went through that experience with her mum, she was like, okay, I’m going to do confinement with my daughter and I’m going to look after my grandchildren, but I’m going to get myself qualified. So she actually went and got herself qualified as a confinement woman, which is like a bit of a mini course degree that you could do because she wanted to make sure she didn’t get it wrong ’cause she had that experience with my grandmother.
It’s important to note that as well as being trained as a confinement person. My mum is not the one dealing with the herbs. Like she works with the herbalist. She is working with someone in tandem who then prepares according to your birth, the type of herbs and soups that you need.
So when I was in London waiting for my mum to travel over, a very exciting box arrived, which was like this huge box full of 60 packets of herbal soups. Each one written for the, the day that you’re meant to have it, whether or not it’s morning or afternoon. And each of them did a completely different thing.
And so depending on whether or not you had a caesarean or whether or not you had a vaginal birth, you would have different suits and different teachers for, and different remedies. So I guess what I’m saying is there’s, there are lots of things circling around online and the justification is, oh, it’s traditional Chinese medicine, therefore it’s good for you.
I would caveat that with, yes. And it might not be like, you need to make sure you are actually putting into your body what will help ’cause maybe something might not. There, there could be a contraindication. I would say work with someone who’s actually qualified, I guess is what I’m saying.
Because sometimes just looking online, it, it might not be helpful and you might be feeding yourself as is the plethora of untruths online. You have to make sure that the information you have is right. So just because we label it with traditional Chinese medicine is not a 100% this is going to work for you scenario.
Le’Nise Brothers: Yeah. I think that’s a really great point. Just because you see it online doesn’t mean it’s going to work for you, work with a qualified professional. I think that applies in so many different areas. Um,
Lexi Elven: we’re all made up of different things.
Le’Nise Brothers: Yeah.
Lexi Elven: And your body composite is different.
What you take into your body will be different. We believe in Chinese culture that your body itself is comprised of like something that is more heated or something that is more cooling. And in Indian, uh, philosophy, they talk about your doshas, which is a very similar concept. mum and I are definitely completely different.
mum is always tracking cold, I’m always tracking hot. So even from an anecdotal point of view, we already know our bodies are not similar in that sense. So that’s why you would have to work with someone just to cater to you and your, your personal needs.
Le’Nise Brothers: That’s so interesting because you do start to see, especially just continuing this kind of thread of what we’ve seen online.
You mentioned the hot water. Things like always covering your feet, you know, don’t walk around bare feet. Don’t drink really cold things. And these basic principles that everyone thinks, oh, that’s Chinese medicine.
Lexi Elven: Mm-hmm.
Le’Nise Brothers: And so what you’re saying is go a little bit deeper.
Lexi Elven: Yeah.
Le’Nise Brothers: If you’re interested, work with a professional, find out what’s right for your body.
Lexi Elven: So I teach pregnant women and would run, uh, pregnancy retreats. And with this we did a little confinement section and talked about postnatal care. And we do talk about try not to have raw food or try and have cooked things and warm, warm drinks.
We do talk about this, but also we talk about this, this, uh, concept where in confinement. There’s almost this urban legend. It’s true, where there’s no bathing. And to expand on that point, it would be back in the day, water wasn’t very clean. And so when we talked about no bathing, it was also a hygiene thing because actually you are in this very raw state.
You may have wounds on your body. You don’t want to be inviting that bacteria into your body because the water itself might not be very clean. Um, and so it can be brought into modern practice. Like I definitely washed after I, but my mother would make me this big bucket of ginger tea, which was just super, super concentrated water that was boiled and it was boiled with fresh ginger.
And mum would make a huge bucket of this every morning. And that was the water that I bathed with that day. So I’d wait for this scaldingly hot water to become more comfortable to use, and then I would use that to wash my body. And there are, warming properties of ginger because the ginger water, once it evaporates off your skin, it has that warming effect as well.
And so it’s this idea of keeping the body warm after birth. And so this is what I mean, like you have to go deeper. Just like you said, it’s not just a, oh, after birth you don’t wash. Ugh, that’s a bit gross and unhygienic. It’s like, well, no, like look at it through the lens of back in the day, it was probably much safer not to do that.
And so these old practices can be utilised in the modern way. It’s possible to do both. You can sit into that intersection of how do we use these ancient practices with respect, but how can we also bring them into a modern context? There is a really famous book written by an Australian Chinese woman about confinement, and there’s a funny moment where she talks about having avocado toast, which of course is not a traditional Chinese thing.
It’s very Australian, but that is how you use it in the context of, you know, if you are in a western country and you might not have access to a lot of these traditional things, how can you still have nutrition in your body? How can we do this in an appropriate way?
Le’Nise Brothers: Right.
Lexi Elven: And so, yeah, I think it is that case.
Like you said, just go a bit deeper and work with someone to really understand what it might mean.
Le’Nise Brothers: Yeah. Confinement. I absolutely love, I love the idea of this, and I did something like a very, very light version of it where my mum came over as well after I gave birth. I had a really difficult birth and she came over and she just kind of took over and she cooked for me.
She just did everything I needed. people share a lot online and you hear these stories where, mothers or mother-in-laws, they’ll come in and they’ll do everything for the baby, but the mum gets left aside. I just felt, remember just feeling so held
Lexi Elven: Yeah.
Le’Nise Brothers: By her. And, and I just feel like it was such a privilege.
She ended up being here for a month and it was just incredible because I really had the time and space to heal.
Lexi Elven: Mm.
Le’Nise Brothers: And when she left, I remember feeling like, oh my gosh, I don’t know how I’m going to do this. I’m
Lexi Elven: doing it on my own.
Le’Nise Brothers: Yeah. I remember
Lexi Elven: that feeling so vividly.
Le’Nise Brothers: Yeah. It just makes me think about, again, of how much we need community.
And, you know, in western culture it’s so individualistic and this idea of confinement and the practice of confinement is so community based. Like, how can we help a, a new mother, a new parent, move through this really tough early days. Yeah. Wow. And so your mum, she did this training.
Like, for me, that’s such a huge act of love, you know?
Lexi Elven: Yeah, it really is. And it really goes to show that I’m not dissimilar to my mum because whilst we were doing confinement, one of the things we practiced was baby massage. And I loved doing that with my boys. It was such a great bonding moment. And I loved it so much that I got myself qualified.
And so I think it we’re not dissimilar, we’re, we’re very similar in that sense, but it was such an act of love. And my mum is not interested for being a confinement woman for other people. She’s like, no, I just got myself qualified so I could look after my, my grandchildren. And she did such a amazing job for both.
And I, but I do remember this because my mum would wake up, do all the cooking, all the cleaning. And like I said, growing up in Hong Kong, my mum was like working as this high powered producer in advertising. She wasn’t really the domestic mum. Um, and, and so seeing my mum do this, wake up early, do the cooking really, that was actually out quite outside of her nature when I was growing up.
So I was really witnessing her just showering us with this abundance of love. And it’s, and in Chinese, you know, in Chinese culture, we do talk about this. We may not, we don’t have the word I love you in the same sense in English, like we actually use it in English ’cause that, that doesn’t translate in ours.
But it is food, it’s acts of cooking food, peeling an orange, making sure there’s, there’s nothing on the orange when you’re peeling it. Peeling peaches like every fruit that maybe people might not peel, Chinese people peel and that is their act of love. Yeah.
Le’Nise Brothers: And I want to talk a little bit now about your wider menstrual experience because you filmed this video and posted on Instagram and this was around endometriosis awareness month, and you talked about your experience. Can we rewind and talk a little bit about, we talked about your first period, and then can you talk about your experience of your period as you went through your teenage years and then beyond, and then how that led to your experience of endometriosis and then how that led to your diagnosis.
Lexi Elven: So when I was growing up, I would say I had a pretty easy ride with my period at the time, I never really complained about them being painful. I don’t remember, I don’t remember. We all had those accidents where someone, and often another girl in school would run to you and be like, take my cardigan and wrap it around your waist.
So we’ve all experienced those moments, which I think actually is really common. I don’t see that as outside of the typical. I had friends who would complain about this pain and it was so debilitating that they couldn’t do pee, they couldn’t do anything. And I remember being like, oh gosh, I really, I don’t have that experience at all.
And I felt really bad that they were going through something that was so vastly different to me. My period I would say was relatively light but erratic. I’d never had it in a regular way. And it was only once I was in my early twenties and I was on the contraceptive pill that my periods became regular in any way.
Because the pill forces you to have those gaps and forces you to have your period at a specific time. So it wasn’t my body doing that. It was very much the medication I was taking. And I came off the pill after being on it for what must have been a, a huge amount of time. Like I must have been on the pill for I want to say eight years, which is a, a long time to be on a contraceptive pill.
And I came off it when we just wanted to explore having children. And it was only after I had my firstborn who has recently turned nine. So this is over nine years ago now. That’s when my periods post birth were really completely different to what I remember them being like in that they were so heavy.
I remember at that point in my life I was, I had moved onto moon cups or a cup system, which so much, in my opinion, so much better. And, uh, I would go to the shops and it would be like, this is the box that you need if you have not given birth, and this is the box that you need if you have given birth. And I would like, what?
I just didn’t understand why there was this difference. And I opened the box for, if you haven’t given birth, it was this tiny, tiny cup. It was like, okay, fine. I definitely am not in this category anymore. But I found that even with the larger cup, it wasn’t enough. I was constantly overflowing. The bleeding was a lot more than I remember it.
And I even went through this whole process of trying different brands, specifically because the volume was so much more than I was used to, and then much more painful and then really terrible cramps leading up to it. Mood swings, like it just seemed like post-birth. My period was a completely different beast.
Le’Nise Brothers: Mm.
Lexi Elven: And I then, as I mentioned in the video, I started passing out, and this, this would happen the first one or two days of my period and when I needed to take a poo, and it was in this process of sitting on the toilet about to pass my bowels. And the pain would come from the bottom of my feet all the way up to my head.
And the only way I can describe it is it felt like a contraction, a really painful contraction in labour. And that pain would make me pass out. And this would constantly happen to the point where I would hit things on the way down. I would, I’d wake up on the floor with a cut on my eyebrow or a lump like an egg on my head.
And I’d very frustrated because I knew something was wrong with my body. Like this is not just a period now, this is fundamentally wrong and I really shouldn’t be passing out from the pain, let alone waking up on the floor. And it was so clear to me that it was related to my cycle. ’cause this only happened day one or two of my period didn’t happen any other time.
And I would go to doctors and I’d try and explain this and they’d all look at me completely clueless. They had no idea what was happening. And you feel quite lost because deep down I’m like, well, there’s clearly something wrong. I know there’s something wrong. I know it’s to do with my period. I think it might be endometriosis.
But again, it’s such a, it’s really not a studied thing at all. And it’s really hard to find people that have the same symptoms as you. And it was only when I spoke to my friend who was diagnosed with endometriosis, and I said, oh, this thing is happening to me. And she just looked at me and she was like, Lexi, you are passing out every time, day one or two when it’s your period.
Like you definitely have endometriosis. And I remember thinking, you are the only one who thinks this. Like every doctor I’ve spoken to or gynaecologist, they’re not taking me seriously at all. And, and I think that’s also really unbelievably frustrating because
Le’Nise Brothers: mm-hmm.
Lexi Elven: You may not think I have endometriosis, but the fact that I am passing out and hitting things on the way down is so abnormal.
Like, this is not how anyone should be living their life.
Le’Nise Brothers: No.
Lexi Elven: From a personal point of view. So un glamorous. If I actually died in that scenario, I don’t want my obituary to say she was sitting on the toilet and she just knocked herself out and died. Like I just couldn’t bel I, it was a farcical experience to be so angry, to be in pain, to have this embarrassing thing happen and no one, no one was worried.
And I think that’s what I was so frustrated with. And I did mention in the video that I just got to the point where last year before New Years, so this was New Year’s Eve, 2024, I passed out and I ended up waking up on the bath. ’cause I had clearly passed out over the bath. And I woke up with this lump in my head and I was irate because this is still happening.
And I’d been going and taking all of these tests and scans and nobody’s confirming anything. And I’m still passing out that I just went on Reddit and I went on an endometriosis forum, and I just ranted, like I was just so angry. And Reddit of all places is not somewhere where I would recommend getting medical advice.
But actually in the forum there were doctors in the NHS and they were asking the important questions and they were saying, well, we think it might be this and this. Go to your doctor, say exactly this phrase and that kind of will escalate you up the list a bit. And then through Reddit I was put in touch with a new GP who was a man, and he looked at me and said, are you okay with me trying to find out what’s wrong?
We think it might be endometriosis, but again, it’s really, really hard for us to diagnose. But you know, if you’re happy for me to try and help you, uh, you know, we, we’ll work on it together. And then that’s really the path that led me to finally getting a diagnosis. But I would say even when I got my diagnosis up until that point and 10 minutes before my diagnosis, it was still no, no, we don’t know what’s wrong.
You’d can’t see anything. Yeah. It was just really, it’s quite shocking and upsetting.
Le’Nise Brothers: Yeah. So I know people listening will be thinking, they’ll probably be screaming at me to ask you this question. I have to ask, what was the phrase that you were told to, to use by the doctors in Reddit?
Lexi Elven: So the exact phrase that the GPs, uh, in Reddit said was, you need to tell your GP that you are experiencing a type of defecation syncope. And this is a reflex where there’s a sudden drop in your heart rate, maybe by blood pressure, maybe by blood flow to the brain, but it causes dizziness and sweating.
And then you have to faint. So it can also be known as a situational syncope or a vasovagal faint. And so that’s what I was experiencing. And in terms of what happened when I finally got the diagnosis,
Le’Nise Brothers: Can I just jump in here? Yes. So what I find outrageous about this, and I’m working in this space for so long, I shouldn’t really have the capacity to be outraged because I’ve seen so many, I’ve seen so many stories and heard so many stories like yours.
But the fact that you had to talk to them about fainting, syncope, meaning fainting.
Lexi Elven: Hmm.
Le’Nise Brothers: Rather than, and that’s what took, got them to take it seriously rather than your experience of the pain and having such a painful experience that it caused you to faint. I just find that completely outrageous.
Lexi Elven: It’s outrageous.
Not only you should be taken seriously without the fainting full stop. You should be believed when someone says, this is really painful and not be dismissed. 100%. And we know what that, what that is like in the birthing world as well. When people say that the whole experience of birth is really painful, they might need to escalate pain medication.
They are often not believed. Like, oh, you’re just being dramatic.
Le’Nise Brothers: Hmm.
Lexi Elven: Um, and that is a huge frustration. But not only that, the fact that I was fainting and without me having to use this phrase, which was given to me by these doctors from Reddit, they still weren’t taking me seriously. So even though I didn’t have the language to describe, this is what I, this is the medical thing that is happening to me.
The fact that I am passing out from pain is so insane to me that this is not normal. Of course, it’s not normal and yet I still wasn’t getting anywhere. And so it’s doubly frustrating. No, of course you don’t need to be, don’t be like me and passing out when you’re trying to take a poo and that’s when people take you seriously.
Like they still weren’t taking me seriously. And that is extremely frustrating. And of course you are angry ’cause you are seeing it again and again and again. And that is so disappointing.
Le’Nise Brothers: And what was a timeline from you starting to experience these really painful day one and day two menstruation to you then getting this language to go to your doctor and then getting the diagnosis?
Lexi Elven: So from post first child, so within eight years, over those eight years, I have been fainting on and off nonstop. Probably five really bad ones where I’ve woken up injured. Other times when I’ve just woken up on my thighs, which I want to say is such a wild scenario, that whenever I know I am on day one or two of my cycle and I know I need to go to the bathroom, I will sit in a specific way and in my head I’m thinking of on an aeroplane where they’re like, brace, brace.
Like sit in a way where if you do pass out, you land on your legs, which is amusing to me, but also darkly funny. I think I was dealing with a lot of the, this wildness of this whole situation ’cause it take, it took me what, over eight years to get this diagnosis that I had to be funny about it in my head.
Like I had to create these funny moments, but it’s not funny, right?
Le’Nise Brothers: No.
Lexi Elven: But I would wake up on my thighs and when I had my second baby, I had an experience where I, I did pass out shortly after giving birth. And again, I was, I had a weird bleed and it was very early on and I actually didn’t get my period, but I remember thinking, oh, this is very unfair.
My baby’s only three months and I’ve ever got my period already. And, and I was on the bathroom and I woke up on my legs and my mum was with us at the time and I went downstairs and my mum looked at me and she went, you are deathly white. Like you look awful. And I said I’m quite sure I just passed out and I woke up on my legs.
And when you do pass out, you have no concept of time. So I, when you go see these doctors, oh well how long did you pass out? Well, I have no idea. I literally went to the bathroom and I woke up on my legs. I think I passed out ’cause I have no memory of sitting upright and then being on my thighs. And at the time with my second born, it was actually the pandemic.
He was born in 2020. And when we went into A&E couldn’t bring him with me because they saw that as a safety risk and he needed to be taken home. He was exclusively breastfed at the time. And I was like, well, how is he going to be fed? And they’re like, well, they’re just going to have to feed him with a bottle at home.
I was like, okay. He’s not, he’s not done that before. Um, and I waited in hospital for absolutely ages. And so that was 2020. That was like six, six years ago. And I’m still, you know, through this whole process, I’m still passing out. And I would say that some of the gynaecologists and some of the nurses I was meeting at the time, some were lovely, some were not.
Some are sympathetic, some are not. I had one woman who just so happened to be like a Singaporean nurse and I was thinking, yes, Asian gods have blessed me with someone who might understand something. And I told her I typically use a moon cup or something like similar for my periods. And she looked at me and she’s like, oh, I’ve never heard of that before.
And I was like, can I change the nurse? This is not helping at all.
Le’Nise Brothers: Can we talk now about diagnosis? So it was quite recent.
Lexi Elven: Very recent.
Le’Nise Brothers: Can you talk about how you actually got diagnosed, the process and how you felt after getting that like official diagnosis?
Lexi Elven: I’m just going to look on my calendar so I really make sure I know exactly when I was.
So it was March 9th, that’s when I was in hospital. So in this whole process I’d been on this waiting list to see the specialist unit in UCLH in London. And I think also because of the backlog due to the pandemic, lots of appointments were constantly being pushed back. And this particular appointment was pushed back many, many months. And in this whole situation, I had also moved cities and I didn’t know what to do because I knew I was going to get this appointment in a specialist unit. But I was now getting further and further away from where this unit was going to be. And when I finally got the confirmation, I went in for my appointment.
The first doctor who saw me was a man. And he was very nice. Did the scan, in the whole process of the scan, uh, it’s a transvaginal scan, so it’s an uncomfortable procedure. Uh, and he started saying things like, oh, we can see some cysts and some fibroids. And in my head I’m thinking, no one said that. So this is all new information.
And I’m thinking, well, maybe what I’m experiencing is fibroids or cysts or maybe something. And as I’m going through this whole process, ’cause you’re, you’re trying to be in your mind whilst this uncomfortable procedure is happening. And then he goes, but they don’t look like anything serious, so I wouldn’t be worried about them.
And then you’re deflated, you’re like, oh, okay. There was this thing that I thought could explain it. Now it’s not that thing. And then afterwards he just said, I’m so sorry, I can’t see anything. And there’s a moment of silence where you are just disappointed again, like this is negative again. I finally made it to the special specialist unit and they can’t see it.
And then he said, let me go grab my consultant to double check. And when the consultant came in, she then went through this whole process. And I would say actually when she was doing her scan, she was a little bit rougher in that I actually think she was trying to seek out the painful points. So she was constantly saying, is this where the pain is?
Is this where the pain is? And if I said yes, she would then delve deeper into those areas. And it was only then that she said, I can see it. I can see two nodules right here. And when she said that, I was like, am I going to cry? Because I didn’t know how to feel ’cause up until that point, literally 10 minutes ago, the man just told me he found nothing.
And now she said, I found it. Here are two nodules.
Le’Nise Brothers: Hmm.
Lexi Elven: So it was this very complicated feeling of being extremely relieved and also finally when I said I had endometriosis in my bum, it was true because actually the nodules were in that lining between the uterus and the bowel. And that’s where, and of course that’s why whenever I was needing to go to the bathroom, that’s where the pressure was being put.
And that’s where the extreme pain was. And that’s why I was passing out.
Le’Nise Brothers: Hmm.
Lexi Elven: So it made sense. Of course, that’s exactly where you would be finding it ’cause that’s where I was really feeling it in my body too. But being not believed and being gaslighted for so long for someone to finally say, that’s it, those are the two nodules.
And seeing it on the screen and seeing these two little nodules and I can’t explain that feeling of relief and devastation.
Le’Nise Brothers: Mm-hmm.
Lexi Elven: I’m extremely relieved that I finally got labelled with the thing that I thought I had. But also it makes me really sad that it took this long.
Le’Nise Brothers: Mm.
Lexi Elven: But the other thing that I mentioned was, I spoke to the first doctor the man who gave me the scan 10 minutes prior who couldn’t find anything.
And I said, could you see what she was talking about when she, she finally showed the two nodules? And he said, honestly, when I was doing my scan, I couldn’t see them at all. But now that she’s found them and I can see them, I agree with her, they are, you know, 100% endometriosis. And so it just goes to show how difficult it is to actually come up on screen.
I also feel that it’s quite frustrating to have a sense that the science is, is so far behind diagnosis because when you go through this whole experience and you know that you are passing out, when you’re on your period, you know, all of this stuff is happening. When you’re on your period, your body is at its worst.
Those one two days that whenever I’ve asked whenever I needed to do a scan or a test, I’ve always asked, should I be doing this when I’m on day one and two of my period? Because I feel like you would get better information. And, and they just say, no, it doesn’t matter. And I just, it’s so untrue. And when you’re reading the papers that are coming out about how people are finally studying period blood, and those one, two days are the most important days when they need to test the blood.
Of course that makes sense. That’s how we feel in our body too. And, and it’s so a step behind where you are reading these papers, but it’s still theoretical. It’s not in practice yet that feels really frustrating that even when they do the tests, they can’t sync it up with when you actually need it the most.
Le’Nise Brothers: Yeah. But also that frustration that you had a doctor there who despite you saying, so the first doctor you saying, I feel this are you sure? And it took him getting his consultant to, and then her probing deeper to actually verify and you just think how many other people were in that room?
Lexi Elven: Yeah.
Le’Nise Brothers: Who have endometriosis, who had that scan with that doctor who got told Oh no, there’s nothing there.
Lexi Elven: Mm-hmm.
Le’Nise Brothers: And you just, you know, I’ve spoken to women before who’ve that sense of frustration, like I know my body, I can feel,
Lexi Elven: and that’s the difference of two minutes.
Le’Nise Brothers: Yeah.
Lexi Elven: And that’s the difference of two different scans.
Le’Nise Brothers: Yeah.
Lexi Elven: And I would say that he was really nice.
Le’Nise Brothers: Mm.
Lexi Elven: And he was really sympathetic and he was actually, I’m so sorry I couldn’t find anything. He didn’t say, this isn’t endometriosis. He did say, I just not found what the issue is. So there was this, uh, understanding that we would continue probing.
Le’Nise Brothers: Okay.
Lexi Elven: Or trying to find out he wasn’t dismissive.
Le’Nise Brothers: Oh.
Lexi Elven: But also I do think it’s their policy to try and find a consultant because he did say consultants can, because they’ve got more experience, can always see more. And I think it’s a good policy for them to have. ’cause I think. It’s, it is definitely, we’re always told as women specifically, you should get a second opinion.
So I do think it’s quite good in the u UCLH process that they bake that second opinion in like,
Le’Nise Brothers: yeah,
Lexi Elven: that’s clearly a policy for them. And thank goodness he did, because if the consultant didn’t come, I would’ve walked away feeling really deflated as well.
Le’Nise Brothers: Yeah, I just think about like deep infiltrating endometriosis where it can be seen on an ultrasound.
Lexi Elven: Yeah.
Le’Nise Brothers: But it does take that specialist eye and it does take that specialist experience to be able to say, actually this, you know, this bit, it doesn’t look exactly right. And that’s, you know, that’s why, you know, you have, we have these consultants, but what happened next? So they found these two, two nodules.
This is in March, so not that long. Very recent. Very, very recent. So what happened after that?
Lexi Elven: So because of the area that it’s in. And I agreed with the consultant when she’d spoke to me about this because she was talking about, funnily enough, I was also reading about this study as well. So I, I’m not naturally a science nerdy person, but when it’s your own body, suddenly you’re really interested.
And she was talking about this specific size and type of a nodule may not benefit from a lap laproscopy, like actually from shaving it off, the scar tissue that develops that pressure would still exist from the scar tissue in itself and the fainting may not be solved. So she was like, I do actually think that this is a, it completely related to your hormones and your cycle because you are more inflamed during those one and two days.
So she had said, we’re going to put you on POP. So the progestogen only pill, which I wasn’t on before, uh, one of the solutions to my pain before when I was passing out was, oh, we’ll just put you on the combination pill, the mini pill. And that was probably two years prior to me finally getting my diagnosis.
And I remember going in to see the gynaecologist and I said, this is happening. I’m in a lot of pain. And she just went, we’re just going to put you on the pill. And I remember thinking, is this some sort of sketch show? Because that feels like the default answer to any female problem. You could come in with like an arm missing and they might say, do you want to go on the pill?
Like I just felt like it was just, that’s like the standard response. And when I was put on the pill, I was miserable. The hormones were really affecting me, but also I bled nonstop for three months. And what would’ve been really useful at the time is if she had said, the reason why I want to put you on the pill is because we think, your uterine lighting is really thick.
And that’s also why you are bleeding so much. So by making you go on this pill for three months, it will be an exercise of thinning your uterus lining wall. And then you’ll get to much more manageable, not so, not such heavy periods. And hopefully that might result in you experiencing less symptoms. But none of this was said, she just told me to go on the pill and be on it for three months, don’t take any break days.
And so I was, in my mind, I was haemorrhaging every day for three months. I did not stop bleeding. And I was so again frustrated ’cause it’s like, why didn’t you just tell me that that’s why you were doing this? Why do I, again, have to try and research what the result might be and what my body might be experiencing?
Like I am not a medical professional, but I am having to try and look this stuff up because I felt completely unsupported by that gynaecologist at the time. And so fast forward to March where they said, we’re going to put you on the progestogen only pill. They said, this is not going to be like the combination pill.
It’s only going to be progestogen. And the basis for this is we want to try and stop your periods because we think that that might be something that is beneficial for you, for what you are experiencing and the particular area that the endometriosis nodules are appearing. We will try all this for three months, see how you feel.
And then coincidentally, the study on this type of small nodules that you have will also come to conclusion. So we’ll be in a much better place in three months time to kind of see how we proceed with your care. And I will report that having been on POP for over a month now, I do feel good. No mood swings.
I did get a bit of a fake period, which you are not meant to have, but according to the research I’ve done online, it’s quite normal to have that for the first two months. So I really have only been on POP for just over a month. But so far, feeling good in my body, haven’t fainted in the moments that I typically do.
So, so far the hormone treatment is working. And again, it’s this thing where there are many, many types of hormonal treatments and that one type of hormonal treatment might not be working for you. Maybe it’s another one you have to explore. But so far feeling good about the truth so far.
Le’Nise Brothers: That’s a great conclusion in that you were finally seen, you got the diagnosis and now you have doctors who are working with you on your care.
Can we talk a little bit about the yoga side of it?
Lexi Elven: Mm.
Le’Nise Brothers: You know, we’ve talked about the medic medical side of managing endometriosis, but what about yoga as a practice? So you are a yoga teacher, you have your own studio. It’s now a community interest company, um, working in and around Stratford.
Lexi Elven: And I have moved to Bristol now as well, so we’ll probably be working and doing stuff here in Bristol too. But yes, I can talk about yoga. It’s an interesting journey in that I’ve been practicing yoga for a long time and my practice has also changed with my body too.
And I suppose I was thinking about this the other day. When you are first practicing yoga, it’s often very dynamic. It feels, which it traditionally actually shouldn’t be, but it’s like a very strong exercise class. And, and that’s most people’s introduction to it. And then if you go deeper and realise that it’s actually, it’s really a, a spiritual practice with a movement compound.
It’s not in itself a physical practice. It’s, it’s so much more. It’s the way you breathe, the way you eat, the way you hold yourself in company, the way you live your life. So when yoga teachers quite like to say the phrase, you know, it’s also yoga off the mat. But what that means is how to live well, how to honour your body, how to honour the environment that you are in, the food that you’re consuming, the education that you’re receiving.
It’s this co it’s, it’s effectively a way of life. And the yoga component in terms of a physical component does help. And I will say that it has dramatically shifted from something that was very, very physical for me and very strong and dynamic. And it has really softened with time. If you are on whatever stage of your cycle, you may have more energy or less energy.
And so your practice will reflect that too. There are some days where you really want to maybe sweat it out, feel your heart race a bit more, feel the blood pump in your skin, or maybe you want to be softer, you want to lie down more. You want to have a very gentle stretch or movement in your body or even just put a twist in your body ’cause that’s where you are feeling a lot of it.
For me, it was always down my right side and so twisting my body and offering that, that long rest and weight on one side, that’s something more yin like or restorative yoga, it’s very, we call it restorative yoga for a reason. It feels that you are restoring your body instead of forcing yourself into difficult acrobatic things.
So I would say my yoga practice has changed with time, but it’s also evolved with my body and what it needs. And there’s such a plethora of different practices and they can change depending on where you are in your cycle and what you need for it. So.
Le’Nise Brothers: Wow. Yeah.
Is there any tips that you would give someone with endometriosis who wants to, so with endometriosis, we know that things like muscle guarding can be an issue where people are experiencing a lot of pain and they hold in one position and that causes more pain.
Or in your experience, you’ve gone to the bathroom, you’ve passed out due to pain. Are there particular parts of yoga, different modalities within yoga that you feel might guide someone as they come out of that painful experience?
Lexi Elven: I would definitely start with something that is more restful and restorative yoga and yin yoga. And when I say yin yoga, sometimes with yin yoga it can ask you to seek out quite a deep edge and maybe pull back from that. Uh, I teach, as I mentioned before, I teach a lot of pregnancy and I think the most important thing that we share in that sort of class is be at around 70% of your maximum.
And that’s not, everyone’s 70% is different. And what you think you need at 70% now will be different to what you need at 70% later in pregnancy. Your body changes so dramatically. So what might be 70% in your first trimester completely changes and 70% in your latter trimester. But likewise, when you’re in your cycle and when you’re experiencing endometriosis symptoms, you’ll be in different needs.
And I would always say, let’s start at 70%. How do you feel? And what I’m really asking you to inquire is how do you feel in your body? It’s not an exact science, I’m not asking you to find the exact 70% number, but I’m asking you to find that space where there is flexibility to pull back if you need to pull back or push forward if you need to push forward.
I think it definitely in, in the Western mindset when they practice yoga, it’s this idea of overstretching, pushing yourself harder. It’s all about results. It’s all about abs. It’s all about bikini bodies. It’s, it’s actually, yoga is not about that at all. It’s really about reflecting on what you feel like internally and then that can be expressed externally.
And so even the poses that we’re putting ourselves in is to try and help us reach a calmer internal state. It’s not an aesthetic external practice, it’s very much an internal practice. So when you’re going through something like endometriosis where you are constantly like, what does my body feel like?
Where am I feeling the pain? This is all yoga. You are already doing it. You are doing that self-inquiry and then maybe some breath work can help calm your nervous system down. Just slow your mindset, have a bit more space to think and then maybe inquire, do I want to move my body? How do I want to move it?
So, you know, as a, as a teacher, as a guide, everyone is doing yoga. It’s just how can we apply that to the scenario that we need.
Le’Nise Brothers: So you’ve shared quite a lot today. We’ve talked about your endometriosis journey, which you’re still on. But that eight years that took you to when you got your diagnosis in March.
We talked about birth experience, confinement, we talked about Chinese medicine, the cultural aspect there. Thinking about what you’ve shared today, is there any one thought you’d love to leave listeners with today?
Lexi Elven: I shared my story because what I really wanted to express wasn’t so much, I finally got my diagnosis.
It was really to try and reach people out there who like me, felt really confused and lost. Like, you deeply know something is wrong and no one was believing you. And like you say, it took me eight years. I think the average diagnosis time is 10 years for endometriosis diagnosis. So eight years is considered early, but in that process of feeling so confused and so deflated and not listened to, I think I shared my story because I, I so want people to know that you can find out what you need to find out.
It’s very demoralising. The landscape is not great, but you have the tools. And I wanted people to try and persevere when they felt lost. And after I shared that story, people did send me messages behind the scenes to say, I’m experiencing this. Thank you so much for sharing that. And I think above all, I just wanted to share that camaraderie.
The fact that I too deeply understand this. It’s also, you know, these are, it is an embarrassing story. Like I don’t want to share that. I’m trying to who and I’m passing out. Right. But it is important for me to say those things because embarrassment for women I think is also a factor that stops women from trying to seek help.
And don’t be embarrassed. You know, there’s something wrong. You know something’s wrong. And go find the help that you need and find someone new if they’re not helping you. Yeah.
Le’Nise Brothers: Thank you so much for sharing your story, on Instagram, but also telling it to me today. If people want to get in touch, if they want to watch your original video, where can people find you?
Lexi Elven: Um, you can find me at @blithe_yoga. It’s pretty much just a diary of myself, but also the work that we’re doing. I am very much one person trying to run multiple things and I am definitely not going to have four Instagram accounts to do that. So you can just all find me in that one space and if you message me, I’ll respond.
So just keep finding it. But yes, thank you so much for having me. It’s been great.
Le’Nise Brothers: Yeah, thank you for your time and thank you so much for sharing your story.
Lexi Elven: You’re so welcome. Thank you.