RAH! Podcast Episode: Perceptions of Menstruation and Endometriosis (and Transcript)

This episode explores Perceptions of Menstruation and Endometriosis, in particular we will ask:

• Why is it such a taboo?
• How can education help to break down the taboo and encourage equality?
• How do the expectations put on women contribute to medical responses to endometriosis?

Featuring:

• Rosie Jackson on perceptions of menstruation in history, and how the taboo could have first arisen.
• Stella Bullo and Zoe Bibbon on how the language we use to talk about menstruation and endometriosis affects how they are considered in medical discourse, and how education might begin to solve the problem.
• Jenny Cole on women’s experiences of living with endometriosis and how social expectations often lead to misdiagnosis and misunderstanding.

Read along while you listen! Find the full episode transcript below.

Disclaimer: The views, thoughts, and opinions expressed in the RAH! Podcast belong solely to the speaker, and are not necessarily reflective of the views of Manchester Metropolitan University, or to the speaker's employer, organization, committee or other group or individual.

RAH! Podcast – Episode 013: 'Perceptions of Menstruation and Endometriosis' Transcript 

RAH! Opening Jingle 
 
Ellie Beal: Hello, and welcome to the RAH! podcast at Manchester Metropolitan University. My name is Ellie Beal. This episode will explore Perceptions of Menstruation and Endometriosis. In particular, we will ask: Why is it such a taboo?  How can education help to break down the taboo and encourage equality? And how do the expectations put on women's social roles contribute to medical responses to endometriosis? 

We will speak to Rosie Jackson about perceptions of menstruation history and how the taboo could have first arisen. 

Rosie Jackson: The power of one woman menstruating can cause death on an unprecedented scale. 

Ellie: Then I'll speak to Stella Bullo and Zoe Bibbon about how the language we use to talk about menstruation and endometriosis affects how they're considered in medical discourse and how education might begin to solve the problem. 

Stella Bullo: How are they going to know that their pain is not normal? When we grow up in a in a culture where we're taught that women are supposed to suffer some level of pain. 

Ellie: Finally, I’ll speak to Jenny Cole about women's experiences of living with endometriosis, and how social expectations often lead to miss diagnosis and misunderstanding. 

Jenny Cole: Oh, it's just, it's just period pains. 

Ellie: You can join the conversation on Twitter by hashtagging #RAH_Podcast.  
 
RAH! Mini Jingle 
 
Ellie: And today I'm joined by Rosie Jackson, who is a PhD candidate, but she also teaches here at Manchester Metropolitan. Welcome, Rosie. 

Rosie: Thank you. 

Ellie: I mean your research sounds fascinating, and it covers quite a broad range of constructions of the women's body. So I wondered if you’d just start off by telling us a little bit about how menstruation specifically fits within that. 

Rosie: So my research focuses sort of widely speaking on the actual rhetoric that surrounds the female body, and the way that male authors try and construct female bodies, specifically within their cultures and their environments. So what I found is that there's massively different ways of talking about the female body in say, fifth century Athens to first century Rome, depending on what the men in those situations require of women. And I'm really focusing on the shift from Rome towards a Christian era and how the arrival of Christianity as a religion does change this rhetoric. And I suppose the first thing to start with really that would be the centrality of the Genesis story, and Eve.

Ellie: Good old Eve.

Rosie: Poor poor Eve. 

Laughter 

Rosie: So as - as we all know, one of Eve’s curses is to suffer in childbirth, and Adam has to suffer working all the days of his life. And for the early Christian authors, this is also taken to extend to menstrual pains. So this is viewed as being something that's part of the curse of Eve and it's a kind of monthly reminder that you are a woman and because you're a woman, you're responsible in some way for the original fall from a state of grace. And this is something that is strangely echoed in non-Christian literature, because what we find with the Greek and the Roman authors is that there's this strange juxtaposition of menstruation, because on the one hand it's a demonstration physically that women are lesser than men. But on the other hand, because it's such a direct physical representation of the female ability to bear children, it's something that's actually to be feared. So, I think the best example of this is probably one of my favourites which comes from a first century Roman author called Pliny the Elder. And in the 28th book, he gives us this analysis of menstruation. And he says that it's wild and mysterious and full of power. And then states that he clearly knows that menstrual blood can cause men to go mad and dogs to kill themselves.  

Laughter 

Rosie: He says that it turns crops into dust and that harvest will fail, says that it causes gold turn rusty, although I have since been told that menstrual blood actually can physically affect that. So that's one thing. 

Ellie: It can actually turn metal to rust? 

Rosie: Yes apparently. 

Ellie: Oh well it’s one of our secret powers. 

Laughter 

Rosie: Secret power. 

Ellie: A particularly useless one but still a power. 

Rosie: Well it gets better because apparently it can also change the direction of the winds, which affects the flow of the sea, which means that ships can crash. So, the power of one woman menstruating can cause death on an unprecedented scale. 

Ellie: It is catastrophic apparently. 

Rosie: Yes! 

Ellie: We only wish we had that power. 

Rosie: I know I mean, it's fascinating to me because he's you know, he's going on about how terrible and dangerous women are. And he's by far not the only author to say this. But at the same time, menstruation is something that makes women weak, so from the moment of conception, menstrual blood is something that's really central to women; it defines you as lesser and it defines your role in life as lesser because you're a child bearer. You're not a politician or a philosopher. And you have these authors trying to somehow fix the two things together and say, “well, women are lesser, but also this gives them great power”. And for me, and I think that this is rooted in fears regarding childbirth. So, one thing that Roman and Greek men have in common is this constant fear that their children are not their own. And this gives women a kind of power over men. So, menstruation, again, is linking into childbirth and is linking into this power that women have over men. So, the response to this is to try and denigrate it and really force it down, push it as something that's weak and it makes you inferior. And one thing Pliny says as well, is that if you have sex with your wife while she is menstruating, you will die. 

Pause 

Rosie: Yeah, yeah. 

Laughter 

Ellie: That's, that's, that's definitely something that is kind of cross cultural. 

Rosie: Within Judaism, it's very different. And I do think there's kind of a bit of a general misunderstanding about the Leviticus codes and what they specifically prohibit. So, while there's this separation, it's in relation to what's sacred, and specifically places where sacrifices are going on. Sacrifices involve blood, menstruation involves blood. Menstruation is a blood with power, sacrificial blood is a blood with power. At this point, it seems to vary by community as to what happens. I mean, it's still divided today. If you look at a lot of different groups of subsets of Catholicism, Protestantism and Baptists, there are still vastly differing opinions about what you should do during menstruation. And it's the same with Judaism.  

Ellie: That's fascinating. Is any of it related to that other, you know, the other iconic women of Christianity, which is Mary? 

Rosie: The early Christian authors differ widely on what they think about Mary, partly because there is a big sort of split between authors who think that Mary herself has some sort of immaculate conception and people who think that she was just human. Where it does start to become interesting is sort of the 11th century onwards in natural iconography. In the first century AD, we meet a guy called Ceraunus, who's a Roman doctor, who writes extensively on women and Ceraunus, again, picks up on the idea of that Aristotle says, which is the menstrual blood forms the child in the womb. And he also believes that after birth, menstrual blood is somehow converted into breast milk. Lots of mediaeval imagery shows Mary with one breast on display, feeding Jesus. And so for these groups of communities, who think that menstrual blood is inherently connected to the actual physical flesh of the child and the breast milk, what you're getting there are these really fascinating images in which the child that Mary's holding which is divine, is also made of her flesh, and she's feeding it her own blood, which is a very weird reading of what we've got earlier on with the idea that menstrual blood is very negative, because here it's what made Jesus who is the Lord and Saviour and it's what continues to sustain him after birth. And this then starts to have wider ramifications with the images that we get of Christ on the cross bleeding with Mary at his feet. He's shedding blood and it's her blood. 

Ellie: It makes me think of the Eucharist again, the idea of kind of consumption of blood. And also, you know that kind of very graphic kind of Catholic iconography, especially of saints, drinking or licking blood from the wounds of Christ as he’s at the crucifixion, which has been discussed in terms of both eroticism, but also the kind of wound-like linking to kind of vaginal imagery and - and things like this as well. So they all seem to somehow be in conversation.  

Rosie: Oh, yes, I mean, blood for the early Christians is the most central symbol. When you read the martyrdom narrative acts they are so focused on blood. The blood has to be there because it shows life. Where it gets really interesting for me and my research is from the third century onwards, when we get the rise of virginity as a way of life, so large numbers of young women are consecrating their virginity, dedicating it to Christ, and these women are not producing children, but at the same time, they are always talked about as being mothers, in the sense that their mothers of all Christian believers, they also represent the church, which is a mother. They represent Mary, who was a mother. And through their pastoral care of other virgins and other Christians in their community, they’re spiritual mothers. And where this is interesting for me is the fact that in the middle of all that you've got the fact that these women will still be menstruating. So where does this tie into this whole idea of what motherhood actually means? And certainly, because these women are also described as being living martyrs, so they're making this big sacrifice which enables them to become closer to Jesus, who's also a virgin, and blood is so necessary for sacrifice. But I wonder if there's any potential we can start to look at that menstrual blood is being sacrificial in some way, in this context. Menstruation is a marker of femininity in the ancient world shortly after we get consecrated virgins. We start to get the rise of people called ascetics, and one aspect of this is restricting your intake of food massively, and one of the things that happens if you’re woman and you starve yourself as that menstruation stops. And when these women also losing huge amounts of weight, what tends to happen is that general secondary sex characteristics start to disappear. 

Ellie: In some way it plays into sacrifice doesn't it - actually that idea, I guess, is another form of sacrifice, of specifically female sacrifice, that they give up their ability to reproduce, that they give up the menstrual cycle. They give up their breasts. It’s a form of sacrifice, isn't it? 

Rosie: We've got this case, which - from Hippocrates, the Greek doctor, and it's about a woman called Fithusa (sp?), and her husband is exiled for some reason. And as a result of this, she stops menstruating. And she becomes extremely ill and the doctors decide that what they need to do is induce menstruation and this will cause her to become cured. But the root of it for me is that the only thing that doctors try and think to do is introduce menstruation. Because menstruation is viewed as being so central to your body and that's why women have to have regular sexual intercourse, because it's believed that sexual intercourse heats up menstrual blood and allows it to move around your body and that's you have better circulation, and you have more regular periods. Although ideally you wouldn't have any at all because you'd be permanently pregnant. But it is interesting. 

Ellie: I’ve just got this imagery of women running around fields to try and get their blood circulating so that they can get pregnant quicker and all sorts of images coming from that. 

Laughter 

Rosie: Oh it’s bizarre the things that are suggested that you have to do. You know, you have to eat garlic that's raw and you have to drink these mixtures of hot honey with acid added. You need to sort of rub these substances up your nose, you need to put things inside your vagina, and this will somehow increase it. But the main answer it always comes back to is if you're not menstruating, you need to have sex and that will somehow cause you to menstruate. 

Ellie: One of the things that struck me about that last story there was that the idea of that somehow still, menstruation is linked in some way to women's emotional worlds.  Whether they're grieving, anything sort of highly emotional, whether they're somehow linked and I've always found that to be fascinating. I wondered, because it is something that still survives very much today. 

Rosie: For the Roman and the Greek there very much is. The idea is that if menstrual blood does have these as - as Pliny says the strange and mysterious powers, the idea is that it's also something that women don't have total control over. Therefore, it's not coming out of you, it's pooling in you and the more menstrual blood you have in you, the less control and in control that you'll be of your emotions. The most perfect way would be for you to be pregnant, because the menstrual blood is still in a way inside you, but it's in the form of a child.  For much of the late antique stuff, we don't really have discussions of this, partially because it does become much more limited to what's allowed to be discussed in the public sphere with regards to rules dictating how you talk about women's bodies. Modesty and chastity are now far more significant than they are within earlier Roman periods. 

Ellie: And I suppose maybe there is this direct link between our Christian heritage and the way in which we do or do not speak around the topic of menstruation. 

Rosie: Oh no, I'd certainly agree because one of the issues that it is in early Christianity is that it is something that is taboo. And it is something that is partially impure. It's not something that should be talked about because it is, again, women's curse. This kind of lack of discussion we have does go back to these roots of “it's taboo, it's dangerous”. And even now, you think about the discourse that goes on around it, if you look at something like Twitter, and you look at the way that menstruation and periods are spoken about, it's often extremely sexist. And there's this idea that it's this gross blood. That's a bit weird. And there's a lack of an understanding about how it functions as well, in terms of… there was a tweet that went around a while ago, with a man saying, “well, sanitary towels are so expensive, why can't you just hold it in until you go to the bathroom?”. 

Ellie: I remember that! 

Rosie: It’s very funny but it’s terrifying! 

Laughter 

Ellie: Thank god he wasn’t older. 

Rosie: It’s the same thing as what's going on in ancient Greece in Rome with men who haven't - don't know what goes on inside the female body, and are just sort of making these wild inferences from what they can know from the outside, and therefore assuming that this is how it works, and this is how it must be understood, and it must be taken. And it links also very well to virginity and the young age of women at marriage. So, lots of the Greek doctors seem to think that sexual intercourse will somehow enable women to menstruate, so you have to marry a girl when she's young, because that first intercourse will enable menstruation. But again, it links back to the patriarchal idea of male control over the female body in terms of men explaining to women what menstruation is and how to deal with it, while not understanding and also ensuring male control throughout the female life cycle from the age where you hit puberty, all the way through your life. 

Ellie: Thank you very much, Rosie.  

Rosie: You’re welcome.

Ellie: Fascinating discussion. 
 
RAH! Mini Jingle 
 
Ellie: We will be talking to Stella Bullo and Zoe Bibbon who are running the project The Language of Endometriosis. So welcome guys. 

Stella Bullo: Hi 

Zoe Bibbon: Thank you 

Ellie: I'm just going to start off just with a quick question of what this is. 

Stella: Okay, well, endometriosis is a gynaecological condition that affects many women. There are talks of it affecting around one in 10 women. It’s a condition whereby tissue that resembles the lining of the womb, grows in other areas outside the womb, and behaves like the lining of the womb. So that means that every month that tissue bleeds, but because it's positioned in various parts of the body, obviously the blood doesn't leave the body and creates various manifestations such as additions or creates cysts. One of the most common consequences of that is that women are in an extreme amount of pain. Depending on where it's positioned, it causes different types of pain or different – well different consequences. For some women, it's not that much pain, but it causes other issues or in the worst of cases, it causes both. But because it is associated with a natural cycle, which is the menstrual cycle, some women are - find it difficult to explain what it is, how they feel, and most importantly, sometimes they feel that they're not heard, or they're not asked or elicited the right questions to determine what it is with them. We believe that one of the big issues with this diagnosis delay, which takes an average of 7.5 years worldwide, is that one of the big deficiencies when it comes to endometriosis is the communication is how - how we talk about pain, how - when we seek help in the first place, and then when we do seek help, how do we explain what's happening to us, and how - how successful is communication when it comes to endometriosis? 

Ellie: And what types of findings are there? Is it a matter of, you know, medical practitioners or whoever asking the right questions or having the right information? Or is it a case of as well of women being more informed about what is an expected level of pain -  

Stella: Exactly. 

Ellie: is a sort of natural or normal level of pain when it comes to menstrual cycle and what is like prolonged or abnormal? 

Stella: And we started the project by interviewing women. And the results of the findings are very consistent throughout the sample, indicating that - well, it's in in this distinction between normal and abnormal pain that the problem tends to reside. If somebody has had the condition forever, how are they going to know that their pain is not normal? When we grew up in a in a culture where we're taught that women are supposed to suffer some level of pain. You know, we bring other discourses such as giving birth, and that kind of thing, and we're told that periods do hurt anyway. And that has been one of the main findings from - from our study, which has actually shaped Zoe’s PhD, so Zoe has been working as a research assistant in the project for a while now. 

Zoe: A very common thread between the - the first group of women that we interviewed was that a lot of them talked about how they started experiencing severe symptoms at very young ages, you know, 13 14, around the time that they started their periods, and this would be when they were at school. And a lot of them talked about how they really struggled to talk to anyone about what they were going through. And they felt very isolated and embarrassed and ashamed to talk about their gynaecological health because it's not something that we're really told is okay to discuss in public. And we heard it lot of stories about how, you know, even talk trying to talk to school nurses about it or teachers or at home that it would just be met with “it's okay it's just normal. It's just part of your you know, cycle. It's something that you can't really do anything about. Take an ibuprofen and you'll be fine”. 

Ellie: A general lack of sympathy. 

Zoe: Exactly a real lack of sympathy and just this real normalisation of something that really shouldn't be that way. Why is it? Why is it that we talk about women's health in this way? Why are we not allowed to express our concerns? Why are we kind of told this is something that you just have to live with? And why is there nowhere to go and seek help when you when you do think something's wrong? And I think a really big thing that came up is that there's just not enough education around it in schools. So that's where my research comes in. I'm looking to understand how and when people are first kind of taught about menstruation, to try and find out where does this language school come from? Where does this inability to express ourselves when it comes to women's health come from? What are your sexual health you know, educational sessions like, and are boys included for example, I think that's a really big thing. If boys aren't included, then maybe that's already the beginning of the whole secrecy around women's health and gynaecological health because it's something that we're told from a very young age is you should hide it. 

Ellie: I think for most women's experiences if it is ever talked about it’s only talked about home with your female parent. 

Zoe: What Zoe is saying is also resonating with something I have come across recently as well. Endometriosis can also lead to infertility later in life. And I recently met somebody whose wife has endometriosis. So out of curiosity, I asked him if he thought that endometriosis had had some sort of impact on - on their relationship. So, I think that the way in which endometriosis affects men is also something worth exploring, and the impact it has in a relationship and exploring this with a view to helping men also develop tools to help women through episodes of endometriosis pain. 

Ellie: Pain is notoriously a hard subject to talk about, but also how do you express to somebody what you need, in times of extreme pain. 

Stella: And that has actually become the main strand of my research at the moment that focuses on the communication of endometriosis pain. Pain is a very vague word that is used in a wide variety of ways. So, when you say I'm in pain, you know, people may not necessarily understand the amount of pain you're in. My current trend of research is based on pain descriptors, on the ways in which pain is communicated. And with a view to developing linguistic tools that will aid the description and the elicitation of the severity of pain and the types of pain that women go through. 

Zoe: A big issue that we've faced is that women talk about how you know when you have a chronic invisible illness, that there's a lot of disbelief around “Well, how much pain are you actually in?” And it's not really until you start exploring all different sort of metaphorical uses that women use to try and get people to understand what - what type of pain they're in. 

Ellie: So the expression of pain, for instance, is something you need to do, and yet you are distanced from a language that allows you to do it because you have to still skirt around the topic of what you're actually talking about because it is a taboo topic. 

Zoe: It's almost like a sanitised version. That's something that comes up repeatedly in my reading at the moment is that anything to do with menstruation is sanitised through language and imagery because if you think about adverts for, the words in itself, sanitary products, it's always women wearing white and you know, on white bedsheets and it's just kind of invokes this idea of cleanliness. 

Ellie: Extra clean and extra fresh and extra white. 

Zoe: And it's also in the name of the products and the way that they described them like ‘for extra protection’ and you know, ‘for peace of mind’ and all this stuff that's constantly reinforcing the idea that we have to keep that side of us hidden at all times, because god forbid someone sees or notices that you're on your period. And the use of anything red, there is never anything red. So, it's really interesting how when you start looking at all these different facets of society how, yeah, there's just a real lack of just anything around - around periods and just letting women talk about what's really going on. 

Ellie: I once had a fabulous friend at school who I envied more than anything because the age of sort of 14 15, she used to stick a tampon in their mouth like a cigar to walk to the toilets at school.

Laughter 

Ellie: You know, pain is not really something you discussed at school or with children of a certain age, because we're still trying to think of them as, sort of, particularly innocent beings, you don't need to know about the troubles of the world and certainly not the troubles of your own body.

Zoe: I think a difficult thing is that our society finds it very difficult to separate menstrual health from sex. People are afraid because they think “well, girls, you know, who started their periods that, you know, then are fertile, they can have children”. But then it links back to what we were saying before, women are always viewed as baby makers. And you know, that's why when it comes to, you know, “Oh, you've actually got a problem conceiving. We should look into that” when all the years before that, when you were saying someone, “I'm in so much pain that I can't get up in the morning and go and do my job or go to school”, that they’re just ignored. We need to separate women from sex. I think there's also a lot of misinformation. I think it was a few years ago when NICE came out with new guidelines, and it was literally listen to women. And it was for healthcare professionals to actually listen to women. And it was just so bizarre to me that it's taken this long for them to realise, you know, women are being underserved in the medical community because people aren't listening to them. 

Stella: So how do we empower women to deal with the consequences of a condition that they don't know they have? That's the big question for us to ask. And I think that the answer is going back to what we were saying in the beginning is education. 

Ellie: Thank you so much for coming in.  

Zoe: Thank you. 

Stella: Thanks for having us. 

Ellie: It’s been really interesting to listen to both of you and I’ve learned loads as well so thank you very much. 

Zoe: Thanks very much for listening. You can find us on Twitter @Endolanguage if you want to stay up to date with our project. 
 
RAH! Mini Jingle 
 
Ellie: I will be talking to Dr Jennifer Cole, who works here at Manchester Metropolitan in the area of social psychology, and body image. And Jennifer is going to be talking to us a little bit more about her current research into endometriosis. So hello, Jennifer. 

Jenny: Hello. 

Ellie: Nice to meet you. 

Jenny: Nice to be here. 

Ellie: So, what was it that attracted you to this particular topic? 

Jenny: One of the things that strikes me about this particular condition is that often the research sort of looks at it as if it's in a social vacuum. 

Ellie: Right? 

Jenny: So, it looks at very medicalized perspectives of the pain experienced, which is very important. But there's a whole other layer that the women within endometriosis have to exist in the world. And that there's a social psychological aspect to this experience, which no one ever really looked at. So some of the recent data we've been looking at suggests that a lot of the expectations of what a woman is and what women do, feeds into how women with endometriosis, manage their condition and the choices that they make about treatment and adherence to treatments, because they're trying to negotiate all their other obligations. And often women do have a wider range of obligations. It's often expected that women will be responsible for childcare and domestic duties and things like that. And all of those additional things alongside you know, work and things like that, and much harder to manage with the chronic pain that goes along with endometriosis. 

Ellie: So some of the things that you are looking at then are the way in which the more kind of complex or demanding roles that women take in society feeds into the types of treatment they get, how seriously their - their illnesses are received. 

Jenny: Yeah, absolutely. A lot of the things that women reported they've been told by doctors when they're presented with symptoms where things like “oh, it's just, it's just period pains. You just have to get used to it. This is just what happens”. And not really taking that pain seriously.

Ellie: How much is this a problem about sort of gender? Do you think? 

Jenny: Because we haven't got a sort of direct comparison, because endometriosis is so tied up with a woman's reproductive function, which is obviously very different to a man's, it's really difficult to compare and contrast and say, “Well, this, this will be treated differently if it was in a man”. I know there’s recently been some suggestion that, for example, in cardiac conditions, that the way that women presents to doctors with cardiac conditions is very different to how men present, and therefore often women are missing out on treatment and diagnosis as a result. So we've got that sort of linked evidence to suggest that that could also be happening in endometriosis, that by virtue of the fact of how women's pain is considered and how women are expected to sort of get on with things, is maybe meaning that their treatment is different how a man would be treated, but we don't have that direct comparison. So, it's actually quite hard to say. 

Ellie: So, do you think women are so used to not having their voices taken seriously as well. They just tend to get on with things without talking about it. 

Jenny: I think there is a general perception that to be a woman is to experience pain. And so, if women internalise those messages, then they might start to think, “well, this is just normal”. But actually, women were telling us how they were going to the doctor and - and presenting an extreme pain, really trying to be taken seriously and still not being taken seriously. One of the themes in our research is women thinking that they were going mad. 

Ellie: Right. 

Jenny: That started to doubt their own sanity. Well, I must be a hypochondriac that and because I'm going to the doctor and I'm talking about this pain, I'm not minimising it. I'm not getting on with it. I'm making it very clear how - how important this is and still no one's taking me seriously. So, you know, there must be something wrong with me. I must be mental. 

Ellie: How much of this do you think is sort of attributed to the fact that lots of people don't know what endometriosis is? 

Jenny: I think that's huge. Yeah, absolutely. One of the things in our research is that women would hide - will not tell people that they had endometriosis, because people don't really understand it. So rather than try and express and explain what endometriosis was, and why it was impacting on their lives so seriously, the women were just not bother, just hide their symptoms. And which meant that then, therefore, it's taken less seriously as a result. It's kind of a vicious circle.  

Ellie: Yeah and it doesn't seem to add like layers and layers of like being missed, or misdiagnosed as well, doesn't it? Because society doesn't really know what it is. 

Jenny: I think our longest period between symptom onset and diagnosis was 23 years. 

Ellie: Oh my gosh. 

Jenny: For one of our participants. In fact, a few are sort of 10 - 20 years. So, for all that time, it had been missed and it's not always easy to identify why. They can only really be diagnosed through surgical procedures, and for the NHS, as stretched as it is, it's not going to be ordering surgical procedures unless there's sort of an indication that that's probably worthwhile. And it's not all is easy to tell what's going on with that chronic pain. 

Ellie: Is there something that women and endometriosis are not thought of being important enough to operate, to spend money on. Is that part of the problem as well?

Jenny: Oh, that'll definitely play a part I'm sure. And there's a general taboo around reproductive function, around menstruation that means that women are often a bit embarrassed to push these sorts of things as well. And women don't really talk in detail necessarily about how they experience menstruation. And so, then women don't get to necessarily find out what is normal menstruation. 

Ellie: So, all those layers of social taboo work against it as well. So how did your research kind of take shape? 

Jenny: So, we had quite a long survey with lots of open ended questions so that women could fully take their time to tell a story. So, we've looked at it from the point of view of what health practitioners maybe need to be looking out for. But we've also looked at it from the point of view of the taboos around bodies and how that may be impacting on diagnosis and also how the social consequences of endometriosis cause almost as much as distress as the - the physical ones. This impacts on their life in lots of different ways. One of the big ones was about fertility and having children, so there's the not being able to have a child when you might want to, but also women were talking about how they failed as a woman. So sometimes doctors would actually suggest having children to fix endometriosis 

Ellie: Right okay. 

Jenny: “You better have kids quick!” 

Ellie: Right okay. 

Jenny: Um, which was, when someone was presenting, you know, with endometriosis symptoms when they were 18 - 19, not particularly helpful. 

Ellie: No, not at all.  

Jenny: I think a lot of it does come from those -  those wider assumptions, yeah, about what a woman is. 

Ellie: One of the areas I guess that women find barriers and find misunderstanding is in their job places. 

Jenny: And I think a lot of people and working with endometriosis charities and things like that would be very positive about a step towards recognising conditions like endometriosis as protected characteristics. Even if we have very understanding employers, for some women with very severe symptoms it's - that may not even be enough. 

Ellie: The kind of storytelling process of their see - the getting the message out there, the story out there will help in terms of, you know, creating things like more funding. It's something that seems to be so misunderstood and so overlooked, it can't be getting the medical focus it really needs. 

Jenny: I think there is change happening in terms of awareness and it'll take a while for that to translate into funding and medical change. I've seen a few stand-up shows and things like that recently, since starting this work actually, focused on endometriosis actually looking at the storytelling aspects of it. I think if you do see a list of symptoms, then people go “Oh, that doesn't sound very nice. Okay”, and they can move on. But reading the stories of women with endometriosis, I think has a different impact. It's hard to ignore. 

Ellie: Yes, I think so. I think very much for coming to visit us, Jennifer. 

Jenny: No problem. 
 
RAH! Mini jingle 

Ellie: Thank you for listening to our podcast on women's health where we have been exploring why health issues unique to women such as menstruation, reproduction, and the frequently debilitating and painful illness, endometriosis is such a taboo.

Early Christian perceptions of the female body have been imaginative, if not always accurately conceived. What is missing from these philosophical and theological accounts are women's experiences of menstruation and their body. Not much has changed in the 21st century, and the historical lack of research on women's health concerns is compromised the quality of health care and information received by women today. Jenny's investigation into women's stories suggests that the larger expectation of women to cope with pain and to carry out professional and domestic tasks, in spite of pain makes them more susceptible to having their health overlooked.  

Ellie: Thank you for listening. Don't forget to follow us on Twitter for future podcast updates. You can find us at @MMU_RAH. For more information on all the research and events we discussed in this episode, please go to the RAH! website for full links. Tune back in soon for more episodes. 
 
RAH! Closing Jingle 

Ellie: This episode was produced by Lucy Simpson Edited by Max Muenster mixed by Julian Holloway and presented by Ellie Beal.