So thanks, Anne-Marie, for having me today. And thank you all for for coming.
This is my first in-person presentation since the before times.
So it's just so nice to see actual faces and not to be talking into a screen for today's stock talk.
I'm using it as an opportunity to bring together some of the ongoing qualitative research I and others have been doing on endometriosis,
and to also reflect on the next steps needed to further this work, especially in relation to intersecting health inequalities.
As Anne-Marie said, I'm a medical and feminist anthropologist by training the research gendered experiences of reproductive sexual adventure health.
And about a decade ago I had the good fortune of getting to work and collaborate with Professor and now Professor Emeritus Elaine Denny.
And Denny is a sociologist who has in her career undertaken the most extensive qualitative
research on women's experiences of end and in each process here within the UK.
And I have to admit that before working with Elaine Denny ten years ago, I, like most people,
had never actually heard of endometriosis, while considered relatively rare even into the early 1980s.
We now know just how common and common it is,
with an estimated one in ten cisgender women and people born female at birth living with the condition worldwide.
However, once I started doing this work and telling people I was doing research on endometriosis,
which I'll now start referring to as Endo, I found out that many of my closest friends have Endo.
My sister in law has it, and even my own maternal grandmother had a hysterectomy because her endo was so severe.
And the fact that so many people close to me had the condition and I didn't know it speaks to just not only how common the condition is,
but how little we talk about it and how little we talk about the symptoms.
I do believe, however, that this is beginning to change with the failures to diagnose and treat and so increasingly highlighted in
the media and in academic discourse as emblematic of wider gender biases and health and medical research.
But most importantly, those within know themselves have harnessed social media in recent years to raise the public profile of the condition,
to fight the stigma that surrounds it, and to advocate for improved health care and more research.
As illustrated in this Instagram post from the end of Monologues project.
Which states female hysteria? Why yes missed being diagnosed time after time does make me feel hysterical.
The Post references the historic links often made between endometriosis and descriptions of hysteria.
That is, ideas about behavioural disturbances caused by the uterus, which hold women with hysteria as unstable, as gender deviant and infertile.
And endometriosis was first recognised as a distinct condition in the 1920s.
It is also accompanied by a history of sexism, racism as classism and classism,
as evidenced and how we it was widely referred to as the career women's disease in medical texts and in popular media.
From around the late 1960s, the nickname Career Women's Disease stemmed from medical descriptions and characterisations of those with Endo as being,
quote, well-to-do, read as white, middle class women who have neglected their childbearing duties to pursue their education and the careers like this.
Description from a 1938 clinical report stating, quote, Two types of patients have endometriosis,
those who are normal in every way except that marriage and pregnancy are delayed.
And those who have a stigma of pelvic underdevelopment is therefore better that there be earlier
marriages and that the contraception be put off until at least one or two pregnancies have occurred.
What is more pathetic than a girl who marries and for economic reasons,
can't have a baby who later goes to her doctor with a sterility, sterility problem that cannot be solved?
While such portrayals are of course now recognised as archaic,
the possibility that women's behaviour is somehow a factor in the disease still sometimes persist.
For example,
many women still report being told by their doctors the widespread myth that having a baby could ease or even potentially cure their endo.
So presently, endometriosis remains a under-researched condition compared to other similarly common health
conditions and misunderstood by the population at large and even by health professionals.
It is often it has often been referred to as an enigmatic disease.
Given its exact origins remain unclear.
Its exact aetiology remains unclear classically and in each year this is defined as a chronic
chronological disease characterised by endometrial like tissue being found outside of the uterus.
This leads to a wide and complex range of symptoms that can be extremely disruptive and debilitating and highly stigmatised.
These include but aren't limited to chronic pelvic pain, debilitating li painful periods.
Very heavy menstrual bleeding. Pain during or after.
Penetrative sex. Bowel and or urinary pain.
Infertility and extreme fatigue.
More recently, however, the classic definition of endo has been challenged as outdated and inaccurate with new developments in medical understandings.
A 2023 2021 Lancet article by Taylor and all are you.
Endo must now be understood as a systemic condition that affects the whole body rather than a solely gynaecological one.
This is because Endo is now thought to be a chronic inflammatory disease.
In fact,
a study right here at Oxford by Professor Zondervan and others found that what we call endo is likely multiple conditions rather than one single one.
And they found genetic links to other inflammatory conditions, such as asthma and osteo arthritis.
But returning to that Lancet article, Taylor and I'll state the full effect of Endo is still not fully recognised and goes far beyond the pelvis.
I was speaking just earlier with someone who was telling me that her endo sign was having pain in her leg.
Right? So it does go far beyond the pelvis and we need to start recognising that.
And they argue that only with better recognition and the full scope of the disease as a systemic, inflammatory condition.
Will clinical diagnosis improve and more comprehensive treatment become available?
And so despite some of this progress and medical understandings of endo, many more unknowns about the condition remain.
There is still no known cure. No truly adequate or effective treatment has been found that is widely available.
Yet treatments have not significantly changed in decades.
Painkillers and contraceptions and contraceptive pills or contraceptive treatments are used to manage or mask symptoms.
And these treatments come with a range of unpleasant side effects.
Surgeries are conducted to remove and tissue and often only provide symptom relief for a few years and for some no relief at all.
And hysterectomies are conducted in some situations, but these are not always guaranteed to provide symptom relief,
whether some types of end or hereditary is still not fully understood.
And while and there was always, almost always referred to as a condition affecting cisgender women of reproductive age,
there are documented cases of women having endo after the menopause,
after hysterectomy, and cases of girls having symptoms prior to their first period.
And while rare, there are documented cases of cisgender men having endometriosis.
All of these unknowns speak to the complexity of all that becomes categorised as endo as well as to.
But it also speaks to the historical and ongoing paucity of research, political will and capital to under better understand this condition.
And in sociological terms, Dini and I have written about Endo as a contested disease,
as there remains no general consensus about the nature of its cause,
its progression and its treatment, or whether indeed it even exist, at least as an overall category.
Sorry. Getting parched.
So innovations in understanding gender and subsequent improvements in diagnosis, times and treatment options can't come soon enough.
The UK introduced no special specialist clinics about a decade ago and now we have 63 clinics across the country.
But despite this, patients still wait on average eight years to get a diagnosis and their stories in
the media play with them waiting 12 years or even 17 years to get a diagnosis.
And most patients will visit a GP an average of ten times before being referred on for specialist care.
These delays and multiple visits occur for a variety of reasons.
A major one is the normalisation and dismissal of women's pain,
and I'll discuss this in more depth shortly as this dismissal of pain has consequences not only for it and don't care,
but for health inequalities more generally.
But other reasons revolve around the inadequate, the inadequacy of current diagnostic tools, and there can only be diagnosed through surgery.
The complexity of symptoms means it resembles many other conditions and therefore is often misdiagnosed,
sometimes as irritable bowel syndrome as fibroids or as a sexually transmitted disease.
And the process of rolling out these conditions takes times and could be part and parcel of that diagnostic process also.
And there does not conform neatly to biomedical models of disease.
This means disease extent does not always directly correlate to symptom severity.
Some with endo have very few symptoms, but surgery reveals extensive endo tissue.
And in contrast, some may experience severe symptoms of pain but have relatively small amount of endo tissue.
In such cases, previous research by Denny from Women report being told by doctors that their symptoms can't be,
quote, that bad with their accounts seen as less credible than what can be detected by currently available measures.
Lastly, we should mention that COVID 19 has also dramatically hit the delays for referrals,
for specialist care, for not only those with suspected endo, but for gynaecological care more generally.
And a recent report from the Royal College of Obstetrics and Gynaecology shows waiting lists are currently 60%, 60% longer than pre-pandemic levels.
And these chronological services was the hardest hit or one of the hardest hit of all NHS specialist services.
This is due in part because half of gynaecology consultants were redeployed to obstetric care during the COVID.
But it's also, according to the Royal College of Obstetrics and Gynaecology,
is due to women's debilitating health problems being seen as benign as not life threatening.
And so we do have to think about how COVID is likely to further the delays that women are currently experiencing of endo.
So the next coming years, we're not expecting these delays to be addressed unless there's a real prioritisation and political will around this.
So now I'm going to briefly discuss some of the relevant findings from a past study
I did with Professor Denney on women's experiences of endometriosis treatments.
In 2018, Denny and I published findings from a series of interviews in focus groups with women
about their experiences of using various hormonal contraceptive treatments the pill,
the coil and injections. And the study was part of a larger randomised controlled trial on endo hormonal treatments.
And Denny and I, we were supposed to do an initial,
these initial interviews and then we were supposed to follow the women through
the course of the three year project to track their ongoing and shifting
experiences of these treatments to provide some longitudinal data as we know that
women face an ongoing merry go round of ineffective surgeries and treatments.
But the trial itself wasn't recruiting as many patients as they had set out to do.
And so the funding body asked for cuts. So guess who got cut?
The qualitative component of the study was cut, and I'm talking about that not now.
Not because I'm bitter. I didn't name the name of the trial. I'm not trying to call anyone out,
but I'm I'm pointing this out to show and to illustrate how the position of patients or women's voices hold in medical research,
where patients perspectives are still seen as supplementary and therefore not necessarily as essential.
Nevertheless, from we did get some really good findings from our initial focus groups and interviews with women primarily and most shockingly,
to Professor Denny. We found that the narratives from our 2018 study had not changed significantly
from those women Professor Denny had collected with women 20 years prior,
as found in Denny's previous published studies conducted in the early 2000s.
Women reported facing long turbulent journeys to diagnosis.
Obtaining a diagnosis, as Denny had found, became a quest for credibility,
for women to know their symptoms are real, for them to be legitimated and seen as real.
And not just as many women will say, quote, in my head.
In our 2018 study, women still reported feeling dismissed and or misdiagnosed by health care professionals.
Denny also found in her 2004 study that women's symptoms weren't trivialised or normalised as typical period pain.
Our study found that once diagnosed, women still report experiencing that ongoing cycle of inadequate treatment for their symptoms.
And indeed, one woman said she enrolled in the trial and was taking part because she was,
quote, desperate to try anything to manage her pain and is illustrated in these quotes.
On the slide, women told us how their symptoms, especially those related to pain,
impacted every aspect of their lives, from work to relationships to their social lives.
And Denny had, of course, found this in her earlier work.
I want to take a moment to show this video because I find that from qualitative research we seek to give voice in health research to patients,
still doesn't quite do it justice than hearing it from themselves and seeing it for yourselves.
So allow me just a moment to play this.
I think you and I have been introduced this time.
Insanity, invisible loneliness.
Until our last council in Singapore.
And then the other continues to live with this thing. You look fine on the outside and on the inside of me.
Did you grow up? Oh, really? What dream do you have?
I may we die in kills. My phone is constantly open,
helps you to get people to take your condition seriously and not just think that it
is by fiat and think that you are overexaggerating excruciating stabbing pains.
And I. I made the hospital at least every week a mulvany addiction.
And now morphine is not even working. I'm now calling for a wheelchair to get around.
I need help. I think this only helped me walk around probably over 20 times across a ten year period.
To date, I've had six surgeries and probably around 50 other invasive procedures.
Probably most likely to make you cry because you never know.
It's like, Oh, you got some serious drugs that would kill.
And they do affect you mentally.
The surgery itself is actually meant to be early diagnosis and not having to wait so long for surgery or for how it relates.
We're all about that already.
Reading the then after reading more than we should want to know more about this illness that is ravaging people's lives left, right and centre.
We need to run. We need research. We need better treatment options.
This change needs to happen now because probably don't want another woman stuck with the tank who's like, I drove.
That, Congressman. And that's not hyperbole when people say I felt like dying or consider taking my life.
There are documented cases of of suicide due to enemy atrocities.
So next I wanted to bring up. Here.
This quote from Emma Barnett. As everyone knows, Emma Barnett is.
She's the BBC Radio Women's Hour. She wrote a book called Period.
It's about plenty time to tackle taboos around menstruation, and she drew on her own experiences of ending uterus endometriosis.
But this is an opinion piece that she put out last month where it states, I'm done sharing my bone grinding endometriosis pain now I want to cure.
And I included it here because it was the sentiment that I similarly had when when
I was thinking through what was the next project I wanted to do on research,
which turned to focus on doctors views of treating endo.
There are multiple literature review summarising the now robust and extensive qualitative evidence on women's experiences of diagnostic delays,
dismissal, ineffective treatment, and on the debilitating impact of the condition on their physical,
emotional and mental health and how disruptive endo is to every aspect of their lives.
And just as Barnett says she's done sharing her bone grinding pain.
I too, didn't want to collect yet another endo trauma story from women who've already lived it
and have already been on that quest faced when they're trying to be seen as credible,
when they're trying to get their disease legitimised and their experiences legitimised and validated and deed.
Instead, I wanted to talk to those who might we might be consider as the gatekeepers to that credibility.
The doctors. So that brings me now to the study I did more recently, and I did this with Dr. Stella Buelow.
She's a linguist, formerly at Manchester Met, but now she runs the language of endometriosis project.
And as she was, we did these interviews with GP's and she had big data on, on how patients describe and use metaphors for pain.
And we were comparing the way doctors describe pain to the way patients describe
pain and we would present these metaphors to doctors to see if they recognise them.
And that we've published elsewhere. But I'm going to talk about some different results from the study.
But I just want to say that engaging GP's as participants in qualitative research is notoriously challenging.
And Jenny told me I wouldn't be able to do it because I know I've already tried.
You won't? Nope, nope. You won't get them. So part of this is due to practical reasons of time constraints,
but also due to the unease they may face or they may experience from the typical power relations of research,
with doctors being accustomed to being the ones who do the investigating than being a participant or a subject of research.
But in the end, we did get 18 clinicians, and that seems a small number.
But compared to other the few studies that are out there with GP's, this is actually larger than some of those studies are comparable to those.
And we have to consider it in light of how hard they are to get.
There are hard to reach. The GP's are hard to reach group. All right, good giggles.
So you've been teaching them well, good. All right, good stuff. So the number again reflects that challenge.
But the majority of doctors who did agree to participate, they were women of the GP's.
Almost half stated that they had a special interest in either women's health, gynaecology and or sexual health.
And one GP did say she had endometriosis and that's why she took part.
And I'll draw on this in a moment, but now I'll turn to the findings.
We did it through a thematic analysis. This is what we found as illustrated by these quotes, which I'm not going to read because this is unpublished.
So keep them in this room and to save them for the podcast.
But as illustrated by these quotes, clinicians describe their experiences of diagnosing and treating patients with possible endo symptoms.
That's challenging, difficult and tricky. Clinicians describe symptoms as being hard to pinpoint and easily mistaken for other conditions.
And this was even for those who were really keen not to miss a diagnosis of Endo and were actively on the lookout for the condition.
GP participants found that NHS referral protocols the need to rule out other possible conditions and
lengthy wait times for specialist investigation and surgery post significant barriers to diagnosis.
Frustration was a dominant theme in both GP's and gynaecologists descriptions of available diagnostic tools and treatment options.
This frustration came from their inability to give patients what they thought they wanted,
which was said to be certainty and cures, especially for chronic, ongoing, painful and disabling symptoms.
Clinicians describe patients in their first encounter as arriving as desperate.
Desperate was a word we heard from that previous study.
Ready for battle or worried that their symptoms were going to be thought to be all in their heads.
That's many women clinicians reported arrive seeking validation,
expecting their accounts won't be believed as illustrated by some of the quotes on this slide.
They reported that communicating under pain and describing such subjective experiences of pain as a real struggle.
Many said they tried to cage pain severity by how it impacts patient's day to day lives rather than using a
pain scale for other endo symptoms such as heavy menstrual B pleading painful intercourse and bowel pain.
Some find that women do share these symptoms freely and openly without prompting,
but others reported that they would have to use sensitive prompts to get patients to discuss these,
as either the women want to link these symptoms to their pain or because they might have been uncomfortable discussing them.
And discussions of infertility were said to be more context specific and dependent on if women were thinking about or trying to have children.
So GP's within primary care.
They reported that GP's reported that within primary care and though is not generally seen as that quote unquote priority condition.
So women have already said that they felt this and we've got GP's now confirming this.
It was said that this is because, well, endo is a debilitating condition.
It is not seen as a life threatening one. The same rationale, however,
of the severity of the impact on women's lives was also why some GP's reported that they strive to investigate it and take it very seriously.
And this hearkens back to that quote that we saw in the video where the woman say,
I'm sad, I might not be dying, but endometriosis is killing my soul.
And in relation to improving care, some spoke of a need to recognise that doctors are human too.
This comes up in interviews when speaking about how doctors are part of a shared culture that stigmatises menstruation.
And because we don't have more open conversations about menstruation,
this makes it more challenging to talk about the range of experiences and which ones might be indicative of ill health.
Some clinicians said in order to improve care, not only do we need to recognise that doctors are human, but that they're merely human.
One gynaecologist said, We as medical doctors need to get better at saying to patients, I don't know, but let's try and find out together.
But she also reflected that quote, It's a very hard thing for medical professionals to say, I don't know.
So many GP's couldn't recall if endometriosis was included in their training curriculum.
And some remember that it wasn't something, it was something that was only covered briefly.
Thus, most GP's did recommend for endo improvements and endo care for improved training.
But some also said real improvements will only come when we have more investment and nature specialist clinics that provide multidisciplinary care.
And when there is a wider, concerted effort to prioritise and invest in research on improving endometriosis, diagnostic tools and treatment options.
One of the key quotes from the doctors was they all think we all think they're mad.
And I want to juxtapose this to a quote from another clinician that was the title of an article from Young Fisher and Kirkman's paper.
Do mad people get endo or does Endo make you mad?
In that article, Young Fisher and Kirkman lay out how clinicians,
when presented with the uncertainties that surround endo discursive construct women themselves rather than endometriosis as a problem,
seeing patients as reproductive bodies with hysterical traits and thus as mad.
I didn't find such notions in my study with doctors, in my conversations with doctors,
but I think that's because I had a sample bias with doctors who participated.
They had a special interest in end or in women's health and during recruiting.
Some GP said they wouldn't take part in an interview because they didn't know enough about endometriosis.
And even when I tried to assure them This is an interview about your experience and your views, it's not about your knowledge.
It's not a test. They still wouldn't want to take part.
And I did have one or two people ask me after the interview what did what I said compared to other people say, was it similar or was it different?
They wanted that. They want a validation for me about that if they had gotten it right.
And so while it might be seen as a limitation, this potential sample bias,
I do think there are insights to be taken from clinicians who are relatively well experienced with Endo and actively looking for it.
Findings demonstrate that while raising awareness about Endo amongst health practitioners and improving training might be needed,
it is not the cure all, so to speak.
Even those who are well trained, aware and proactively seeking to diagnose Endo still find it a challenging condition to treat.
These findings also echo those of the recent 2020 study by Dixon in all titled Navigating Endometriosis in Primary Care,
and it's the first and largest to date English based qualitative qualitative study with GP's.
She got, I think 46 participants. I was very jealous.
But sharing that Sharon Dixon has an and she's a GP herself. So like, well that's what you had to do.
But Dixon and I'll they concluded quote, GP's considerations are more complex than simply lacking awareness and that GP
discussions were quote underpinned by their knowledge of uncertainties and unknowns,
including the wide spectrum and unpredictability of endometriosis and Dr. Bernie Griffiths,
ethnography of Antrim Metro CIS that was based here in the UK and it was published in her 2019 book, Healers and Patients Talk.
And it's the first and I think only ethnography on endometriosis.
And she calls for moving beyond the battle metaphors we have between doctors and patients.
You hear of endo warriors and women coming equipped, ready to battle, she says.
Some doctors I spoke to, or so I said,
some doctors I spoke to said empathy and listening to women and believing women
were especially crucial when dealing with so many of the unknowns around Endo.
And they reported taking a more patient as partner approach.
But sometimes doctors, however, they would admit that to say they don't know they were concerned it could leave them open to criticism,
I would argue, and striving for these improved patient doctor relations,
we can't lose sight of the fact that doctors occupy a special social status
and they do hold power over those who do and do not access specialist care.
And based on previous conversations with Griffith, she argues,
we cannot speak of improving patient doctor community communication as if such relationships occur in a vacuum,
detached from larger societal and intersectional structures of inequality.
Recently. Dr. Nick Arif. Does anyone know Dr. Maggie Arias?
She's Tik Tok famous Tik Tok famous GP. She goes on the morning shows a lot.
She does a lot of work around menopause, but also endometriosis.
So she's a well-known GP and advocate, advocate for women's health.
And she was on a panel discussion at a a screening of an endometriosis documentary
called Below the Belt that was screened in London earlier this month. And it's fantastic.
But on the panel discussion, Dr. Arif said the causes of poor endo care are due to medical misogyny.
She also said the Royal College of General Practitioners had asked her to stop saying that and then she used a very strong explicating.
And because I'm being recorded, I won't say it, I won't repeat it.
But she used that to describe how she felt about them, asking her to stop referring to medical misogyny as as a reason for poor care.
And this, of course, received a very strong applause from from the audience.
But we do have to recognise that the practise of medicine is not immune to sexism.
A 2021 British Medical Association survey found 91% of doctors who are women reported experiencing sexism,
and the overwhelming majority, 84% of doctors, both women and men, felt that the issue of sexism is in the medical profession.
So if you're a doctor and you're facing sexual discrimination yourself and you know that these gendered stereotypes and the sexism happening,
why would patients be immune from experiencing such sexism, too?
And also in the report show that they they themselves have it asking for male doctors rather than female doctors.
But so now turning back to how sexism and gender stereotypes affect patient care, social and Dimitrius,
this research offers insights to the larger gendered health inequalities,
or what's been termed the gender gap in health, particularly in relation to pain.
Hoffman and Tarzan's. I've never said these words out these names out loud, so I'm like, Oh, right.
Hoffman and Tarzan's 2001 study The Girl Who Cried Pain at a Bias against Women and the
treatment of Pain found that while women are more likely to seek treatment for chronic pain,
they are also more likely to receive inadequate or poor care.
With health care protection practitioners often initially discounting women's verbal accounts of pain.
Have you heard about how sometimes women will take they'll use apps that apps about their
pain experiences or the menstruation experience will be believed more than their words,
right? So Hofmann and Tosin Tarzi and have documented how women's verbal accounts are not taken as seriously.
But they found that while men are socialised and perceived to be more stoical when in pain, and thus they should be believed when they do seek care,
women are perceived to be more likely to report pain experiences as they are thought not to fear appearing vulnerable for doing so.
They're not thought to be seen as weak for doing so. Are fear that like men would.
Women are also believed to higher have higher pain thresholds and a greater ability to cope with pain
due to their reproductive capacity and common everyday experiences of pain related to menstruation.
Those experiences of pain come to be seen as natural for women, but abnormal for men.
The normalisation of women's pain has not only been recorded in qualitative investigations of endo.
Women in American emergency departments reportedly wait on average 16 minutes longer than men to receive medication after reporting abdominal pain.
In the UK, studies show that misinterpretations of female pain as exactly contribute to
women being around 50% more likely to be misdiagnosed after a heart attack.
And a 2019 study conducted at Yale University.
And they made a video of a five year old child getting a jab from a nurse.
And they put the child in gender neutral clothing and they would show that video to adults and
adults that were told given told the child's name was a male name and that the child was a male.
They would rate that child's pain experiences higher than those adults that were told the video
was of a girl and said this is the same child with an identical circumstance of the same job,
with an identical response. But the boy was seen to be in more severe pain than the girl.
So social research on Endo, which evidences how women report being disbelieved about their accounts of their bodies and their symptom experiences.
Mirror, mirror. Many investigations of women's health issues from menopause symptoms to severe morning sickness and pregnancy,
to those who have had severe medical complications related to vaginal mesh as documented in the recent Cumberland Review.
So I'm now nearing the end of my presentation, and you'll notice that I've not discussed gendered health inequalities.
I've only discussed gendered health equalities, but I've not adequately discussed all the other various forms of inequalities.
This is because to date, social research on endometriosis, including studies conducted by myself,
have largely been carried out with white, middle class, heterosexual, cisgender women.
So while social endometriosis research has contributed to understandings of gendered health inequalities,
it has, as a body of work, contributed relatively less to understandings of intersectional health inequalities.
To date, there is a little published research on the endo experiences of women of colour.
But work has been done tends to be focussed on how culture shapes women's varied experiences.
But this is problematic in itself as it presents women of colour as having culture and white women as the norm and without culture,
when in fact hegemonic cultural beliefs around gender roles,
fertility and menstrual stigma very much shape not only white women's experiences of the condition,
but also dominant medical discourses and practises around endo.
There's also an absence of high quality quantitative data on ethnic and racial disparities in endometriosis, prevalence, diagnosis and care.
Bhujia Alles 2019 Systematic review on the influence of race and ethnicity on prevalence and presentations
of endometriosis found that black women are less likely to be diagnosed than white women with endometriosis.
However,
the prevalence rates amongst different racially minoritized groups remain unclear due to the limited quality of data on the subject and boujee.
And I'll argue that while future studies need to investigate the association between race, ethnicity and endometriosis.
But they caution such studies need to be interpreted through a lens of quantifying the disparities in access to diagnostic care.
But the two can. Insights of social and the nature of this research, however, do offer insights for addressing intersectional inequalities in health.
The two insights of believing women and not normalising pain are essential here.
The history of gynaecology is intimately wrapped up in the history of slavery,
and black women's bodies are as used as test subjects in horrific surgical procedures without pain relief.
And American based research shows some health professionals maintain racial
stereotypes with beliefs that black patients experience less pain than white patients.
And the key message from advocates addressing the shocking disparities in the number
of black women who die in pregnancy or for pregnancy will remain related conditions.
The key message from them is listen to black women and believe them and their knowledge about their bodies.
And I'm running out of time.
I think I just wanted to say lastly, there are little pockets of social and other research with various marginalised groups,
but they're very small, like a little bit here with trans, non-binary and intersex community, a little bit with Latinx community.
But for me to go through them is quite tokenistic, and I think that speaks larger to what's happened in social endometrium.
As this research is, we've unintentionally replicated the very thing we were trying to critique with a career women's disease.
So and there was seen as the disease of affluent middle class white women.
And we've replicated with that in the narratives that we've captured.
And so myself and Elaine and a few others, we started the Endometriosis Social Research Network.
And this is a key priority in the intimate shows, this research that we're carrying out.
And also we're really pushing to recognise that those who are carrying out the research themselves,
those are setting who are setting the research priorities are themselves not from those research communities.
And so if we don't ourselves reflect the communities we're seeking to, to to capture their experiences,
those communities will always be on the outside and us on the inside of those institutions with access to the funding,
with access to the research dollars, with access to everything and going in and having to access them.
Right? So they will always be seen as those hard to reach if they are always on the outside.
And that's the next thing that we really, really, really need to address. I thank you.
I ended with my a plug for the for the network. So if you ever do want to find out more about what we're doing, please do email me.
And I think I've left enough time for questions. All right. Thank you very much.
Thank.