1 00:00:01,620 --> 00:00:05,700 So thanks, Anne-Marie, for having me today. And thank you all for for coming. 2 00:00:05,910 --> 00:00:09,720 This is my first in-person presentation since the before times. 3 00:00:10,200 --> 00:00:16,290 So it's just so nice to see actual faces and not to be talking into a screen for today's stock talk. 4 00:00:16,290 --> 00:00:25,080 I'm using it as an opportunity to bring together some of the ongoing qualitative research I and others have been doing on endometriosis, 5 00:00:25,470 --> 00:00:32,340 and to also reflect on the next steps needed to further this work, especially in relation to intersecting health inequalities. 6 00:00:33,000 --> 00:00:40,980 As Anne-Marie said, I'm a medical and feminist anthropologist by training the research gendered experiences of reproductive sexual adventure health. 7 00:00:41,430 --> 00:00:49,230 And about a decade ago I had the good fortune of getting to work and collaborate with Professor and now Professor Emeritus Elaine Denny. 8 00:00:49,650 --> 00:00:55,620 And Denny is a sociologist who has in her career undertaken the most extensive qualitative 9 00:00:55,620 --> 00:01:00,360 research on women's experiences of end and in each process here within the UK. 10 00:01:02,130 --> 00:01:10,470 And I have to admit that before working with Elaine Denny ten years ago, I, like most people, 11 00:01:10,650 --> 00:01:18,120 had never actually heard of endometriosis, while considered relatively rare even into the early 1980s. 12 00:01:18,540 --> 00:01:21,509 We now know just how common and common it is, 13 00:01:21,510 --> 00:01:28,620 with an estimated one in ten cisgender women and people born female at birth living with the condition worldwide. 14 00:01:29,430 --> 00:01:34,259 However, once I started doing this work and telling people I was doing research on endometriosis, 15 00:01:34,260 --> 00:01:40,860 which I'll now start referring to as Endo, I found out that many of my closest friends have Endo. 16 00:01:41,070 --> 00:01:47,670 My sister in law has it, and even my own maternal grandmother had a hysterectomy because her endo was so severe. 17 00:01:48,750 --> 00:01:58,080 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, 18 00:01:58,290 --> 00:02:02,130 but how little we talk about it and how little we talk about the symptoms. 19 00:02:03,360 --> 00:02:10,769 I do believe, however, that this is beginning to change with the failures to diagnose and treat and so increasingly highlighted in 20 00:02:10,770 --> 00:02:18,480 the media and in academic discourse as emblematic of wider gender biases and health and medical research. 21 00:02:18,900 --> 00:02:27,810 But most importantly, those within know themselves have harnessed social media in recent years to raise the public profile of the condition, 22 00:02:28,080 --> 00:02:33,570 to fight the stigma that surrounds it, and to advocate for improved health care and more research. 23 00:02:34,050 --> 00:02:37,860 As illustrated in this Instagram post from the end of Monologues project. 24 00:02:38,490 --> 00:02:45,870 Which states female hysteria? Why yes missed being diagnosed time after time does make me feel hysterical. 25 00:02:46,380 --> 00:02:52,830 The Post references the historic links often made between endometriosis and descriptions of hysteria. 26 00:02:53,100 --> 00:03:03,120 That is, ideas about behavioural disturbances caused by the uterus, which hold women with hysteria as unstable, as gender deviant and infertile. 27 00:03:07,470 --> 00:03:12,660 And endometriosis was first recognised as a distinct condition in the 1920s. 28 00:03:13,110 --> 00:03:19,200 It is also accompanied by a history of sexism, racism as classism and classism, 29 00:03:19,200 --> 00:03:27,600 as evidenced and how we it was widely referred to as the career women's disease in medical texts and in popular media. 30 00:03:27,900 --> 00:03:38,370 From around the late 1960s, the nickname Career Women's Disease stemmed from medical descriptions and characterisations of those with Endo as being, 31 00:03:38,550 --> 00:03:49,230 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. 32 00:03:49,230 --> 00:03:56,460 Description from a 1938 clinical report stating, quote, Two types of patients have endometriosis, 33 00:03:56,580 --> 00:04:00,510 those who are normal in every way except that marriage and pregnancy are delayed. 34 00:04:00,780 --> 00:04:05,909 And those who have a stigma of pelvic underdevelopment is therefore better that there be earlier 35 00:04:05,910 --> 00:04:11,100 marriages and that the contraception be put off until at least one or two pregnancies have occurred. 36 00:04:11,460 --> 00:04:14,970 What is more pathetic than a girl who marries and for economic reasons, 37 00:04:14,970 --> 00:04:21,300 can't have a baby who later goes to her doctor with a sterility, sterility problem that cannot be solved? 38 00:04:24,620 --> 00:04:27,860 While such portrayals are of course now recognised as archaic, 39 00:04:28,430 --> 00:04:35,150 the possibility that women's behaviour is somehow a factor in the disease still sometimes persist. 40 00:04:35,570 --> 00:04:36,260 For example, 41 00:04:36,260 --> 00:04:46,670 many women still report being told by their doctors the widespread myth that having a baby could ease or even potentially cure their endo. 42 00:04:52,690 --> 00:05:00,819 So presently, endometriosis remains a under-researched condition compared to other similarly common health 43 00:05:00,820 --> 00:05:05,950 conditions and misunderstood by the population at large and even by health professionals. 44 00:05:06,520 --> 00:05:10,780 It is often it has often been referred to as an enigmatic disease. 45 00:05:10,930 --> 00:05:14,200 Given its exact origins remain unclear. 46 00:05:15,700 --> 00:05:22,509 Its exact aetiology remains unclear classically and in each year this is defined as a chronic 47 00:05:22,510 --> 00:05:29,230 chronological disease characterised by endometrial like tissue being found outside of the uterus. 48 00:05:29,650 --> 00:05:38,260 This leads to a wide and complex range of symptoms that can be extremely disruptive and debilitating and highly stigmatised. 49 00:05:38,680 --> 00:05:45,910 These include but aren't limited to chronic pelvic pain, debilitating li painful periods. 50 00:05:46,750 --> 00:05:49,899 Very heavy menstrual bleeding. Pain during or after. 51 00:05:49,900 --> 00:05:53,860 Penetrative sex. Bowel and or urinary pain. 52 00:05:54,010 --> 00:05:57,070 Infertility and extreme fatigue. 53 00:05:58,060 --> 00:06:05,720 More recently, however, the classic definition of endo has been challenged as outdated and inaccurate with new developments in medical understandings. 54 00:06:06,400 --> 00:06:11,770 A 2023 2021 Lancet article by Taylor and all are you. 55 00:06:11,950 --> 00:06:19,390 Endo must now be understood as a systemic condition that affects the whole body rather than a solely gynaecological one. 56 00:06:19,780 --> 00:06:23,860 This is because Endo is now thought to be a chronic inflammatory disease. 57 00:06:24,550 --> 00:06:24,850 In fact, 58 00:06:24,850 --> 00:06:36,670 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. 59 00:06:36,910 --> 00:06:43,060 And they found genetic links to other inflammatory conditions, such as asthma and osteo arthritis. 60 00:06:43,660 --> 00:06:53,530 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. 61 00:06:53,560 --> 00:06:58,720 I was speaking just earlier with someone who was telling me that her endo sign was having pain in her leg. 62 00:06:59,080 --> 00:07:02,800 Right? So it does go far beyond the pelvis and we need to start recognising that. 63 00:07:03,370 --> 00:07:09,730 And they argue that only with better recognition and the full scope of the disease as a systemic, inflammatory condition. 64 00:07:10,210 --> 00:07:14,620 Will clinical diagnosis improve and more comprehensive treatment become available? 65 00:07:15,750 --> 00:07:22,200 And so despite some of this progress and medical understandings of endo, many more unknowns about the condition remain. 66 00:07:22,560 --> 00:07:29,670 There is still no known cure. No truly adequate or effective treatment has been found that is widely available. 67 00:07:29,670 --> 00:07:33,690 Yet treatments have not significantly changed in decades. 68 00:07:34,140 --> 00:07:43,350 Painkillers and contraceptions and contraceptive pills or contraceptive treatments are used to manage or mask symptoms. 69 00:07:43,710 --> 00:07:47,400 And these treatments come with a range of unpleasant side effects. 70 00:07:48,450 --> 00:07:56,130 Surgeries are conducted to remove and tissue and often only provide symptom relief for a few years and for some no relief at all. 71 00:07:56,790 --> 00:08:03,630 And hysterectomies are conducted in some situations, but these are not always guaranteed to provide symptom relief, 72 00:08:04,890 --> 00:08:08,550 whether some types of end or hereditary is still not fully understood. 73 00:08:09,180 --> 00:08:17,310 And while and there was always, almost always referred to as a condition affecting cisgender women of reproductive age, 74 00:08:17,580 --> 00:08:21,810 there are documented cases of women having endo after the menopause, 75 00:08:22,170 --> 00:08:28,200 after hysterectomy, and cases of girls having symptoms prior to their first period. 76 00:08:28,710 --> 00:08:33,930 And while rare, there are documented cases of cisgender men having endometriosis. 77 00:08:34,590 --> 00:08:41,909 All of these unknowns speak to the complexity of all that becomes categorised as endo as well as to. 78 00:08:41,910 --> 00:08:51,810 But it also speaks to the historical and ongoing paucity of research, political will and capital to under better understand this condition. 79 00:08:53,100 --> 00:08:59,040 And in sociological terms, Dini and I have written about Endo as a contested disease, 80 00:08:59,310 --> 00:09:03,150 as there remains no general consensus about the nature of its cause, 81 00:09:03,600 --> 00:09:10,050 its progression and its treatment, or whether indeed it even exist, at least as an overall category. 82 00:09:16,990 --> 00:09:18,250 Sorry. Getting parched. 83 00:09:22,780 --> 00:09:30,670 So innovations in understanding gender and subsequent improvements in diagnosis, times and treatment options can't come soon enough. 84 00:09:31,240 --> 00:09:38,500 The UK introduced no special specialist clinics about a decade ago and now we have 63 clinics across the country. 85 00:09:38,890 --> 00:09:44,350 But despite this, patients still wait on average eight years to get a diagnosis and their stories in 86 00:09:44,350 --> 00:09:49,780 the media play with them waiting 12 years or even 17 years to get a diagnosis. 87 00:09:50,350 --> 00:09:56,440 And most patients will visit a GP an average of ten times before being referred on for specialist care. 88 00:09:57,190 --> 00:10:01,210 These delays and multiple visits occur for a variety of reasons. 89 00:10:01,570 --> 00:10:05,410 A major one is the normalisation and dismissal of women's pain, 90 00:10:05,920 --> 00:10:12,940 and I'll discuss this in more depth shortly as this dismissal of pain has consequences not only for it and don't care, 91 00:10:12,940 --> 00:10:14,740 but for health inequalities more generally. 92 00:10:15,460 --> 00:10:26,380 But other reasons revolve around the inadequate, the inadequacy of current diagnostic tools, and there can only be diagnosed through surgery. 93 00:10:26,710 --> 00:10:33,700 The complexity of symptoms means it resembles many other conditions and therefore is often misdiagnosed, 94 00:10:34,030 --> 00:10:39,820 sometimes as irritable bowel syndrome as fibroids or as a sexually transmitted disease. 95 00:10:40,540 --> 00:10:47,830 And the process of rolling out these conditions takes times and could be part and parcel of that diagnostic process also. 96 00:10:48,160 --> 00:10:51,970 And there does not conform neatly to biomedical models of disease. 97 00:10:52,540 --> 00:10:57,640 This means disease extent does not always directly correlate to symptom severity. 98 00:10:58,120 --> 00:11:03,730 Some with endo have very few symptoms, but surgery reveals extensive endo tissue. 99 00:11:03,910 --> 00:11:11,210 And in contrast, some may experience severe symptoms of pain but have relatively small amount of endo tissue. 100 00:11:11,530 --> 00:11:18,009 In such cases, previous research by Denny from Women report being told by doctors that their symptoms can't be, 101 00:11:18,010 --> 00:11:25,000 quote, that bad with their accounts seen as less credible than what can be detected by currently available measures. 102 00:11:27,160 --> 00:11:33,790 Lastly, we should mention that COVID 19 has also dramatically hit the delays for referrals, 103 00:11:33,790 --> 00:11:40,420 for specialist care, for not only those with suspected endo, but for gynaecological care more generally. 104 00:11:40,750 --> 00:11:51,220 And a recent report from the Royal College of Obstetrics and Gynaecology shows waiting lists are currently 60%, 60% longer than pre-pandemic levels. 105 00:11:51,610 --> 00:11:59,140 And these chronological services was the hardest hit or one of the hardest hit of all NHS specialist services. 106 00:11:59,530 --> 00:12:08,890 This is due in part because half of gynaecology consultants were redeployed to obstetric care during the COVID. 107 00:12:09,250 --> 00:12:14,709 But it's also, according to the Royal College of Obstetrics and Gynaecology, 108 00:12:14,710 --> 00:12:21,490 is due to women's debilitating health problems being seen as benign as not life threatening. 109 00:12:22,510 --> 00:12:29,739 And so we do have to think about how COVID is likely to further the delays that women are currently experiencing of endo. 110 00:12:29,740 --> 00:12:37,120 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. 111 00:12:42,190 --> 00:12:45,879 So now I'm going to briefly discuss some of the relevant findings from a past study 112 00:12:45,880 --> 00:12:50,620 I did with Professor Denney on women's experiences of endometriosis treatments. 113 00:12:51,040 --> 00:12:56,889 In 2018, Denny and I published findings from a series of interviews in focus groups with women 114 00:12:56,890 --> 00:13:02,980 about their experiences of using various hormonal contraceptive treatments the pill, 115 00:13:02,980 --> 00:13:10,930 the coil and injections. And the study was part of a larger randomised controlled trial on endo hormonal treatments. 116 00:13:11,260 --> 00:13:14,620 And Denny and I, we were supposed to do an initial, 117 00:13:14,980 --> 00:13:17,889 these initial interviews and then we were supposed to follow the women through 118 00:13:17,890 --> 00:13:22,570 the course of the three year project to track their ongoing and shifting 119 00:13:22,570 --> 00:13:27,459 experiences of these treatments to provide some longitudinal data as we know that 120 00:13:27,460 --> 00:13:32,020 women face an ongoing merry go round of ineffective surgeries and treatments. 121 00:13:32,530 --> 00:13:37,630 But the trial itself wasn't recruiting as many patients as they had set out to do. 122 00:13:37,870 --> 00:13:41,290 And so the funding body asked for cuts. So guess who got cut? 123 00:13:42,430 --> 00:13:46,389 The qualitative component of the study was cut, and I'm talking about that not now. 124 00:13:46,390 --> 00:13:50,590 Not because I'm bitter. I didn't name the name of the trial. I'm not trying to call anyone out, 125 00:13:50,860 --> 00:13:59,950 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, 126 00:14:00,130 --> 00:14:05,770 where patients perspectives are still seen as supplementary and therefore not necessarily as essential. 127 00:14:07,000 --> 00:14:15,430 Nevertheless, from we did get some really good findings from our initial focus groups and interviews with women primarily and most shockingly, 128 00:14:15,760 --> 00:14:22,840 to Professor Denny. We found that the narratives from our 2018 study had not changed significantly 129 00:14:23,050 --> 00:14:28,660 from those women Professor Denny had collected with women 20 years prior, 130 00:14:29,320 --> 00:14:33,610 as found in Denny's previous published studies conducted in the early 2000s. 131 00:14:33,970 --> 00:14:37,930 Women reported facing long turbulent journeys to diagnosis. 132 00:14:38,740 --> 00:14:44,440 Obtaining a diagnosis, as Denny had found, became a quest for credibility, 133 00:14:45,160 --> 00:14:51,250 for women to know their symptoms are real, for them to be legitimated and seen as real. 134 00:14:51,400 --> 00:14:55,210 And not just as many women will say, quote, in my head. 135 00:14:56,290 --> 00:15:03,250 In our 2018 study, women still reported feeling dismissed and or misdiagnosed by health care professionals. 136 00:15:04,030 --> 00:15:11,680 Denny also found in her 2004 study that women's symptoms weren't trivialised or normalised as typical period pain. 137 00:15:12,820 --> 00:15:21,010 Our study found that once diagnosed, women still report experiencing that ongoing cycle of inadequate treatment for their symptoms. 138 00:15:21,250 --> 00:15:26,680 And indeed, one woman said she enrolled in the trial and was taking part because she was, 139 00:15:26,680 --> 00:15:33,009 quote, desperate to try anything to manage her pain and is illustrated in these quotes. 140 00:15:33,010 --> 00:15:37,719 On the slide, women told us how their symptoms, especially those related to pain, 141 00:15:37,720 --> 00:15:43,060 impacted every aspect of their lives, from work to relationships to their social lives. 142 00:15:43,660 --> 00:15:46,060 And Denny had, of course, found this in her earlier work. 143 00:15:50,180 --> 00:16:01,130 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, 144 00:16:01,370 --> 00:16:06,250 still doesn't quite do it justice than hearing it from themselves and seeing it for yourselves. 145 00:16:06,260 --> 00:16:10,220 So allow me just a moment to play this. 146 00:16:19,480 --> 00:16:24,120 I think you and I have been introduced this time. 147 00:16:24,800 --> 00:16:29,530 Insanity, invisible loneliness. 148 00:16:29,740 --> 00:16:36,750 Until our last council in Singapore. 149 00:16:36,760 --> 00:16:43,170 And then the other continues to live with this thing. You look fine on the outside and on the inside of me. 150 00:16:43,180 --> 00:16:49,870 Did you grow up? Oh, really? What dream do you have? 151 00:16:50,500 --> 00:16:56,209 I may we die in kills. My phone is constantly open, 152 00:16:56,210 --> 00:17:01,610 helps you to get people to take your condition seriously and not just think that it 153 00:17:01,610 --> 00:17:08,929 is by fiat and think that you are overexaggerating excruciating stabbing pains. 154 00:17:08,930 --> 00:17:15,419 And I. I made the hospital at least every week a mulvany addiction. 155 00:17:15,420 --> 00:17:20,460 And now morphine is not even working. I'm now calling for a wheelchair to get around. 156 00:17:21,090 --> 00:17:30,960 I need help. I think this only helped me walk around probably over 20 times across a ten year period. 157 00:17:31,380 --> 00:17:38,790 To date, I've had six surgeries and probably around 50 other invasive procedures. 158 00:17:39,150 --> 00:17:42,480 Probably most likely to make you cry because you never know. 159 00:17:42,570 --> 00:17:45,820 It's like, Oh, you got some serious drugs that would kill. 160 00:17:46,140 --> 00:17:48,300 And they do affect you mentally. 161 00:17:48,810 --> 00:18:00,680 The surgery itself is actually meant to be early diagnosis and not having to wait so long for surgery or for how it relates. 162 00:18:01,140 --> 00:18:03,050 We're all about that already. 163 00:18:04,520 --> 00:18:15,950 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. 164 00:18:16,460 --> 00:18:21,020 We need to run. We need research. We need better treatment options. 165 00:18:21,710 --> 00:18:28,850 This change needs to happen now because probably don't want another woman stuck with the tank who's like, I drove. 166 00:18:30,350 --> 00:18:37,520 That, Congressman. And that's not hyperbole when people say I felt like dying or consider taking my life. 167 00:18:37,540 --> 00:18:41,860 There are documented cases of of suicide due to enemy atrocities. 168 00:18:45,190 --> 00:18:53,299 So next I wanted to bring up. Here. 169 00:18:53,300 --> 00:18:57,080 This quote from Emma Barnett. As everyone knows, Emma Barnett is. 170 00:18:58,930 --> 00:19:03,970 She's the BBC Radio Women's Hour. She wrote a book called Period. 171 00:19:04,600 --> 00:19:10,720 It's about plenty time to tackle taboos around menstruation, and she drew on her own experiences of ending uterus endometriosis. 172 00:19:11,380 --> 00:19:20,200 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. 173 00:19:20,620 --> 00:19:26,199 And I included it here because it was the sentiment that I similarly had when when 174 00:19:26,200 --> 00:19:30,010 I was thinking through what was the next project I wanted to do on research, 175 00:19:30,640 --> 00:19:33,910 which turned to focus on doctors views of treating endo. 176 00:19:34,600 --> 00:19:44,379 There are multiple literature review summarising the now robust and extensive qualitative evidence on women's experiences of diagnostic delays, 177 00:19:44,380 --> 00:19:51,160 dismissal, ineffective treatment, and on the debilitating impact of the condition on their physical, 178 00:19:51,160 --> 00:19:57,460 emotional and mental health and how disruptive endo is to every aspect of their lives. 179 00:19:58,090 --> 00:20:02,360 And just as Barnett says she's done sharing her bone grinding pain. 180 00:20:02,650 --> 00:20:09,370 I too, didn't want to collect yet another endo trauma story from women who've already lived it 181 00:20:09,370 --> 00:20:14,530 and have already been on that quest faced when they're trying to be seen as credible, 182 00:20:14,740 --> 00:20:23,920 when they're trying to get their disease legitimised and their experiences legitimised and validated and deed. 183 00:20:24,310 --> 00:20:31,210 Instead, I wanted to talk to those who might we might be consider as the gatekeepers to that credibility. 184 00:20:31,420 --> 00:20:43,790 The doctors. So that brings me now to the study I did more recently, and I did this with Dr. Stella Buelow. 185 00:20:43,810 --> 00:20:52,420 She's a linguist, formerly at Manchester Met, but now she runs the language of endometriosis project. 186 00:20:53,770 --> 00:21:02,440 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. 187 00:21:02,440 --> 00:21:06,159 And we were comparing the way doctors describe pain to the way patients describe 188 00:21:06,160 --> 00:21:10,720 pain and we would present these metaphors to doctors to see if they recognise them. 189 00:21:10,840 --> 00:21:14,920 And that we've published elsewhere. But I'm going to talk about some different results from the study. 190 00:21:16,930 --> 00:21:22,750 But I just want to say that engaging GP's as participants in qualitative research is notoriously challenging. 191 00:21:22,930 --> 00:21:25,930 And Jenny told me I wouldn't be able to do it because I know I've already tried. 192 00:21:25,960 --> 00:21:31,960 You won't? Nope, nope. You won't get them. So part of this is due to practical reasons of time constraints, 193 00:21:31,960 --> 00:21:38,410 but also due to the unease they may face or they may experience from the typical power relations of research, 194 00:21:38,410 --> 00:21:45,790 with doctors being accustomed to being the ones who do the investigating than being a participant or a subject of research. 195 00:21:47,440 --> 00:21:52,959 But in the end, we did get 18 clinicians, and that seems a small number. 196 00:21:52,960 --> 00:21:59,560 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. 197 00:22:00,430 --> 00:22:04,250 And we have to consider it in light of how hard they are to get. 198 00:22:04,420 --> 00:22:09,510 There are hard to reach. The GP's are hard to reach group. All right, good giggles. 199 00:22:09,510 --> 00:22:15,790 So you've been teaching them well, good. All right, good stuff. So the number again reflects that challenge. 200 00:22:17,200 --> 00:22:23,079 But the majority of doctors who did agree to participate, they were women of the GP's. 201 00:22:23,080 --> 00:22:29,590 Almost half stated that they had a special interest in either women's health, gynaecology and or sexual health. 202 00:22:29,830 --> 00:22:33,700 And one GP did say she had endometriosis and that's why she took part. 203 00:22:34,510 --> 00:22:38,620 And I'll draw on this in a moment, but now I'll turn to the findings. 204 00:22:39,610 --> 00:22:47,470 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. 205 00:22:47,890 --> 00:22:50,980 So keep them in this room and to save them for the podcast. 206 00:22:51,250 --> 00:22:58,889 But as illustrated by these quotes, clinicians describe their experiences of diagnosing and treating patients with possible endo symptoms. 207 00:22:58,890 --> 00:23:07,240 That's challenging, difficult and tricky. Clinicians describe symptoms as being hard to pinpoint and easily mistaken for other conditions. 208 00:23:07,600 --> 00:23:16,420 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. 209 00:23:16,930 --> 00:23:23,889 GP participants found that NHS referral protocols the need to rule out other possible conditions and 210 00:23:23,890 --> 00:23:30,480 lengthy wait times for specialist investigation and surgery post significant barriers to diagnosis. 211 00:23:31,030 --> 00:23:38,920 Frustration was a dominant theme in both GP's and gynaecologists descriptions of available diagnostic tools and treatment options. 212 00:23:39,310 --> 00:23:44,080 This frustration came from their inability to give patients what they thought they wanted, 213 00:23:44,350 --> 00:23:52,420 which was said to be certainty and cures, especially for chronic, ongoing, painful and disabling symptoms. 214 00:23:55,420 --> 00:23:59,409 Clinicians describe patients in their first encounter as arriving as desperate. 215 00:23:59,410 --> 00:24:01,600 Desperate was a word we heard from that previous study. 216 00:24:02,080 --> 00:24:07,870 Ready for battle or worried that their symptoms were going to be thought to be all in their heads. 217 00:24:08,320 --> 00:24:12,280 That's many women clinicians reported arrive seeking validation, 218 00:24:12,730 --> 00:24:19,060 expecting their accounts won't be believed as illustrated by some of the quotes on this slide. 219 00:24:20,200 --> 00:24:27,760 They reported that communicating under pain and describing such subjective experiences of pain as a real struggle. 220 00:24:28,180 --> 00:24:35,530 Many said they tried to cage pain severity by how it impacts patient's day to day lives rather than using a 221 00:24:35,530 --> 00:24:42,130 pain scale for other endo symptoms such as heavy menstrual B pleading painful intercourse and bowel pain. 222 00:24:42,520 --> 00:24:46,420 Some find that women do share these symptoms freely and openly without prompting, 223 00:24:46,720 --> 00:24:52,060 but others reported that they would have to use sensitive prompts to get patients to discuss these, 224 00:24:52,270 --> 00:24:58,840 as either the women want to link these symptoms to their pain or because they might have been uncomfortable discussing them. 225 00:24:59,710 --> 00:25:08,530 And discussions of infertility were said to be more context specific and dependent on if women were thinking about or trying to have children. 226 00:25:12,810 --> 00:25:15,900 So GP's within primary care. 227 00:25:17,400 --> 00:25:26,130 They reported that GP's reported that within primary care and though is not generally seen as that quote unquote priority condition. 228 00:25:26,970 --> 00:25:30,600 So women have already said that they felt this and we've got GP's now confirming this. 229 00:25:31,110 --> 00:25:34,320 It was said that this is because, well, endo is a debilitating condition. 230 00:25:34,330 --> 00:25:38,580 It is not seen as a life threatening one. The same rationale, however, 231 00:25:38,820 --> 00:25:46,980 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. 232 00:25:47,310 --> 00:25:50,730 And this hearkens back to that quote that we saw in the video where the woman say, 233 00:25:50,730 --> 00:25:55,530 I'm sad, I might not be dying, but endometriosis is killing my soul. 234 00:25:56,880 --> 00:26:03,120 And in relation to improving care, some spoke of a need to recognise that doctors are human too. 235 00:26:03,540 --> 00:26:10,499 This comes up in interviews when speaking about how doctors are part of a shared culture that stigmatises menstruation. 236 00:26:10,500 --> 00:26:13,890 And because we don't have more open conversations about menstruation, 237 00:26:14,130 --> 00:26:20,400 this makes it more challenging to talk about the range of experiences and which ones might be indicative of ill health. 238 00:26:21,150 --> 00:26:29,160 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. 239 00:26:29,520 --> 00:26:38,430 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. 240 00:26:38,970 --> 00:26:45,690 But she also reflected that quote, It's a very hard thing for medical professionals to say, I don't know. 241 00:26:47,080 --> 00:26:55,330 So many GP's couldn't recall if endometriosis was included in their training curriculum. 242 00:26:55,720 --> 00:27:00,130 And some remember that it wasn't something, it was something that was only covered briefly. 243 00:27:00,580 --> 00:27:06,850 Thus, most GP's did recommend for endo improvements and endo care for improved training. 244 00:27:07,300 --> 00:27:16,780 But some also said real improvements will only come when we have more investment and nature specialist clinics that provide multidisciplinary care. 245 00:27:17,020 --> 00:27:26,050 And when there is a wider, concerted effort to prioritise and invest in research on improving endometriosis, diagnostic tools and treatment options. 246 00:27:30,390 --> 00:27:34,860 One of the key quotes from the doctors was they all think we all think they're mad. 247 00:27:35,190 --> 00:27:44,400 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. 248 00:27:44,730 --> 00:27:49,170 Do mad people get endo or does Endo make you mad? 249 00:27:49,380 --> 00:27:53,220 In that article, Young Fisher and Kirkman lay out how clinicians, 250 00:27:53,220 --> 00:28:02,370 when presented with the uncertainties that surround endo discursive construct women themselves rather than endometriosis as a problem, 251 00:28:02,940 --> 00:28:08,370 seeing patients as reproductive bodies with hysterical traits and thus as mad. 252 00:28:09,930 --> 00:28:15,260 I didn't find such notions in my study with doctors, in my conversations with doctors, 253 00:28:15,570 --> 00:28:20,070 but I think that's because I had a sample bias with doctors who participated. 254 00:28:20,370 --> 00:28:24,809 They had a special interest in end or in women's health and during recruiting. 255 00:28:24,810 --> 00:28:31,530 Some GP said they wouldn't take part in an interview because they didn't know enough about endometriosis. 256 00:28:31,860 --> 00:28:38,429 And even when I tried to assure them This is an interview about your experience and your views, it's not about your knowledge. 257 00:28:38,430 --> 00:28:41,790 It's not a test. They still wouldn't want to take part. 258 00:28:41,820 --> 00:28:48,780 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? 259 00:28:48,990 --> 00:28:52,800 They wanted that. They want a validation for me about that if they had gotten it right. 260 00:28:55,050 --> 00:28:58,350 And so while it might be seen as a limitation, this potential sample bias, 261 00:28:58,350 --> 00:29:05,730 I do think there are insights to be taken from clinicians who are relatively well experienced with Endo and actively looking for it. 262 00:29:06,420 --> 00:29:13,470 Findings demonstrate that while raising awareness about Endo amongst health practitioners and improving training might be needed, 263 00:29:13,830 --> 00:29:15,960 it is not the cure all, so to speak. 264 00:29:16,440 --> 00:29:24,630 Even those who are well trained, aware and proactively seeking to diagnose Endo still find it a challenging condition to treat. 265 00:29:25,320 --> 00:29:33,180 These findings also echo those of the recent 2020 study by Dixon in all titled Navigating Endometriosis in Primary Care, 266 00:29:33,450 --> 00:29:39,180 and it's the first and largest to date English based qualitative qualitative study with GP's. 267 00:29:39,450 --> 00:29:42,510 She got, I think 46 participants. I was very jealous. 268 00:29:43,740 --> 00:29:47,880 But sharing that Sharon Dixon has an and she's a GP herself. So like, well that's what you had to do. 269 00:29:49,410 --> 00:29:58,920 But Dixon and I'll they concluded quote, GP's considerations are more complex than simply lacking awareness and that GP 270 00:29:58,920 --> 00:30:03,780 discussions were quote underpinned by their knowledge of uncertainties and unknowns, 271 00:30:04,050 --> 00:30:12,270 including the wide spectrum and unpredictability of endometriosis and Dr. Bernie Griffiths, 272 00:30:12,570 --> 00:30:19,350 ethnography of Antrim Metro CIS that was based here in the UK and it was published in her 2019 book, Healers and Patients Talk. 273 00:30:19,350 --> 00:30:22,980 And it's the first and I think only ethnography on endometriosis. 274 00:30:23,490 --> 00:30:28,770 And she calls for moving beyond the battle metaphors we have between doctors and patients. 275 00:30:28,980 --> 00:30:33,990 You hear of endo warriors and women coming equipped, ready to battle, she says. 276 00:30:33,990 --> 00:30:38,420 Some doctors I spoke to, or so I said, 277 00:30:38,440 --> 00:30:43,079 some doctors I spoke to said empathy and listening to women and believing women 278 00:30:43,080 --> 00:30:47,610 were especially crucial when dealing with so many of the unknowns around Endo. 279 00:30:48,000 --> 00:30:51,390 And they reported taking a more patient as partner approach. 280 00:30:51,990 --> 00:31:02,070 But sometimes doctors, however, they would admit that to say they don't know they were concerned it could leave them open to criticism, 281 00:31:03,300 --> 00:31:07,260 I would argue, and striving for these improved patient doctor relations, 282 00:31:07,260 --> 00:31:11,910 we can't lose sight of the fact that doctors occupy a special social status 283 00:31:12,180 --> 00:31:16,860 and they do hold power over those who do and do not access specialist care. 284 00:31:17,400 --> 00:31:21,990 And based on previous conversations with Griffith, she argues, 285 00:31:21,990 --> 00:31:29,220 we cannot speak of improving patient doctor community communication as if such relationships occur in a vacuum, 286 00:31:29,460 --> 00:31:33,510 detached from larger societal and intersectional structures of inequality. 287 00:31:35,760 --> 00:31:41,100 Recently. Dr. Nick Arif. Does anyone know Dr. Maggie Arias? 288 00:31:41,100 --> 00:31:45,659 She's Tik Tok famous Tik Tok famous GP. She goes on the morning shows a lot. 289 00:31:45,660 --> 00:31:48,780 She does a lot of work around menopause, but also endometriosis. 290 00:31:49,800 --> 00:31:55,110 So she's a well-known GP and advocate, advocate for women's health. 291 00:31:56,250 --> 00:32:03,300 And she was on a panel discussion at a a screening of an endometriosis documentary 292 00:32:03,630 --> 00:32:07,800 called Below the Belt that was screened in London earlier this month. And it's fantastic. 293 00:32:08,190 --> 00:32:16,290 But on the panel discussion, Dr. Arif said the causes of poor endo care are due to medical misogyny. 294 00:32:17,520 --> 00:32:26,690 She also said the Royal College of General Practitioners had asked her to stop saying that and then she used a very strong explicating. 295 00:32:26,820 --> 00:32:29,400 And because I'm being recorded, I won't say it, I won't repeat it. 296 00:32:30,260 --> 00:32:40,070 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. 297 00:32:40,940 --> 00:32:45,530 And this, of course, received a very strong applause from from the audience. 298 00:32:46,550 --> 00:32:50,870 But we do have to recognise that the practise of medicine is not immune to sexism. 299 00:32:51,110 --> 00:32:59,390 A 2021 British Medical Association survey found 91% of doctors who are women reported experiencing sexism, 300 00:33:00,530 --> 00:33:10,040 and the overwhelming majority, 84% of doctors, both women and men, felt that the issue of sexism is in the medical profession. 301 00:33:11,210 --> 00:33:17,450 So if you're a doctor and you're facing sexual discrimination yourself and you know that these gendered stereotypes and the sexism happening, 302 00:33:17,840 --> 00:33:21,290 why would patients be immune from experiencing such sexism, too? 303 00:33:21,410 --> 00:33:27,860 And also in the report show that they they themselves have it asking for male doctors rather than female doctors. 304 00:33:28,520 --> 00:33:34,759 But so now turning back to how sexism and gender stereotypes affect patient care, social and Dimitrius, 305 00:33:34,760 --> 00:33:38,569 this research offers insights to the larger gendered health inequalities, 306 00:33:38,570 --> 00:33:43,280 or what's been termed the gender gap in health, particularly in relation to pain. 307 00:33:44,030 --> 00:33:49,220 Hoffman and Tarzan's. I've never said these words out these names out loud, so I'm like, Oh, right. 308 00:33:49,460 --> 00:33:55,490 Hoffman and Tarzan's 2001 study The Girl Who Cried Pain at a Bias against Women and the 309 00:33:55,490 --> 00:33:59,840 treatment of Pain found that while women are more likely to seek treatment for chronic pain, 310 00:34:00,140 --> 00:34:03,920 they are also more likely to receive inadequate or poor care. 311 00:34:03,950 --> 00:34:10,730 With health care protection practitioners often initially discounting women's verbal accounts of pain. 312 00:34:11,480 --> 00:34:15,830 Have you heard about how sometimes women will take they'll use apps that apps about their 313 00:34:15,830 --> 00:34:20,360 pain experiences or the menstruation experience will be believed more than their words, 314 00:34:20,360 --> 00:34:29,060 right? So Hofmann and Tosin Tarzi and have documented how women's verbal accounts are not taken as seriously. 315 00:34:30,170 --> 00:34:39,440 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, 316 00:34:39,440 --> 00:34:48,050 women are perceived to be more likely to report pain experiences as they are thought not to fear appearing vulnerable for doing so. 317 00:34:48,410 --> 00:34:52,460 They're not thought to be seen as weak for doing so. Are fear that like men would. 318 00:34:53,180 --> 00:34:59,630 Women are also believed to higher have higher pain thresholds and a greater ability to cope with pain 319 00:34:59,900 --> 00:35:06,080 due to their reproductive capacity and common everyday experiences of pain related to menstruation. 320 00:35:06,500 --> 00:35:12,530 Those experiences of pain come to be seen as natural for women, but abnormal for men. 321 00:35:13,610 --> 00:35:18,740 The normalisation of women's pain has not only been recorded in qualitative investigations of endo. 322 00:35:19,550 --> 00:35:29,570 Women in American emergency departments reportedly wait on average 16 minutes longer than men to receive medication after reporting abdominal pain. 323 00:35:30,200 --> 00:35:35,839 In the UK, studies show that misinterpretations of female pain as exactly contribute to 324 00:35:35,840 --> 00:35:41,690 women being around 50% more likely to be misdiagnosed after a heart attack. 325 00:35:42,470 --> 00:35:46,010 And a 2019 study conducted at Yale University. 326 00:35:46,220 --> 00:35:51,530 And they made a video of a five year old child getting a jab from a nurse. 327 00:35:51,830 --> 00:35:57,229 And they put the child in gender neutral clothing and they would show that video to adults and 328 00:35:57,230 --> 00:36:02,570 adults that were told given told the child's name was a male name and that the child was a male. 329 00:36:02,900 --> 00:36:08,570 They would rate that child's pain experiences higher than those adults that were told the video 330 00:36:08,570 --> 00:36:14,840 was of a girl and said this is the same child with an identical circumstance of the same job, 331 00:36:14,840 --> 00:36:19,580 with an identical response. But the boy was seen to be in more severe pain than the girl. 332 00:36:22,010 --> 00:36:31,790 So social research on Endo, which evidences how women report being disbelieved about their accounts of their bodies and their symptom experiences. 333 00:36:32,150 --> 00:36:39,590 Mirror, mirror. Many investigations of women's health issues from menopause symptoms to severe morning sickness and pregnancy, 334 00:36:40,850 --> 00:36:47,600 to those who have had severe medical complications related to vaginal mesh as documented in the recent Cumberland Review. 335 00:36:49,280 --> 00:36:54,800 So I'm now nearing the end of my presentation, and you'll notice that I've not discussed gendered health inequalities. 336 00:36:55,610 --> 00:37:01,730 I've only discussed gendered health equalities, but I've not adequately discussed all the other various forms of inequalities. 337 00:37:02,210 --> 00:37:08,420 This is because to date, social research on endometriosis, including studies conducted by myself, 338 00:37:09,170 --> 00:37:14,570 have largely been carried out with white, middle class, heterosexual, cisgender women. 339 00:37:15,020 --> 00:37:20,750 So while social endometriosis research has contributed to understandings of gendered health inequalities, 340 00:37:20,960 --> 00:37:28,610 it has, as a body of work, contributed relatively less to understandings of intersectional health inequalities. 341 00:37:30,060 --> 00:37:36,060 To date, there is a little published research on the endo experiences of women of colour. 342 00:37:37,260 --> 00:37:43,620 But work has been done tends to be focussed on how culture shapes women's varied experiences. 343 00:37:43,920 --> 00:37:52,290 But this is problematic in itself as it presents women of colour as having culture and white women as the norm and without culture, 344 00:37:52,290 --> 00:37:56,399 when in fact hegemonic cultural beliefs around gender roles, 345 00:37:56,400 --> 00:38:03,570 fertility and menstrual stigma very much shape not only white women's experiences of the condition, 346 00:38:03,780 --> 00:38:08,250 but also dominant medical discourses and practises around endo. 347 00:38:09,480 --> 00:38:18,180 There's also an absence of high quality quantitative data on ethnic and racial disparities in endometriosis, prevalence, diagnosis and care. 348 00:38:18,930 --> 00:38:28,379 Bhujia Alles 2019 Systematic review on the influence of race and ethnicity on prevalence and presentations 349 00:38:28,380 --> 00:38:35,070 of endometriosis found that black women are less likely to be diagnosed than white women with endometriosis. 350 00:38:35,610 --> 00:38:36,120 However, 351 00:38:36,120 --> 00:38:46,589 the prevalence rates amongst different racially minoritized groups remain unclear due to the limited quality of data on the subject and boujee. 352 00:38:46,590 --> 00:38:53,010 And I'll argue that while future studies need to investigate the association between race, ethnicity and endometriosis. 353 00:38:53,310 --> 00:39:01,650 But they caution such studies need to be interpreted through a lens of quantifying the disparities in access to diagnostic care. 354 00:39:03,090 --> 00:39:11,100 But the two can. Insights of social and the nature of this research, however, do offer insights for addressing intersectional inequalities in health. 355 00:39:11,460 --> 00:39:18,180 The two insights of believing women and not normalising pain are essential here. 356 00:39:18,660 --> 00:39:23,399 The history of gynaecology is intimately wrapped up in the history of slavery, 357 00:39:23,400 --> 00:39:30,330 and black women's bodies are as used as test subjects in horrific surgical procedures without pain relief. 358 00:39:30,630 --> 00:39:34,230 And American based research shows some health professionals maintain racial 359 00:39:34,230 --> 00:39:39,060 stereotypes with beliefs that black patients experience less pain than white patients. 360 00:39:39,360 --> 00:39:43,950 And the key message from advocates addressing the shocking disparities in the number 361 00:39:43,950 --> 00:39:49,020 of black women who die in pregnancy or for pregnancy will remain related conditions. 362 00:39:49,560 --> 00:39:54,870 The key message from them is listen to black women and believe them and their knowledge about their bodies. 363 00:39:55,380 --> 00:39:57,090 And I'm running out of time. 364 00:39:58,740 --> 00:40:03,870 I think I just wanted to say lastly, there are little pockets of social and other research with various marginalised groups, 365 00:40:04,050 --> 00:40:11,940 but they're very small, like a little bit here with trans, non-binary and intersex community, a little bit with Latinx community. 366 00:40:12,060 --> 00:40:19,560 But for me to go through them is quite tokenistic, and I think that speaks larger to what's happened in social endometrium. 367 00:40:19,560 --> 00:40:26,100 As this research is, we've unintentionally replicated the very thing we were trying to critique with a career women's disease. 368 00:40:26,280 --> 00:40:31,019 So and there was seen as the disease of affluent middle class white women. 369 00:40:31,020 --> 00:40:34,080 And we've replicated with that in the narratives that we've captured. 370 00:40:34,890 --> 00:40:40,650 And so myself and Elaine and a few others, we started the Endometriosis Social Research Network. 371 00:40:40,650 --> 00:40:46,740 And this is a key priority in the intimate shows, this research that we're carrying out. 372 00:40:46,950 --> 00:40:51,030 And also we're really pushing to recognise that those who are carrying out the research themselves, 373 00:40:51,240 --> 00:40:56,610 those are setting who are setting the research priorities are themselves not from those research communities. 374 00:40:56,790 --> 00:41:04,590 And so if we don't ourselves reflect the communities we're seeking to, to to capture their experiences, 375 00:41:04,800 --> 00:41:10,230 those communities will always be on the outside and us on the inside of those institutions with access to the funding, 376 00:41:10,230 --> 00:41:14,760 with access to the research dollars, with access to everything and going in and having to access them. 377 00:41:15,210 --> 00:41:20,970 Right? So they will always be seen as those hard to reach if they are always on the outside. 378 00:41:20,970 --> 00:41:25,050 And that's the next thing that we really, really, really need to address. I thank you. 379 00:41:25,380 --> 00:41:32,640 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. 380 00:41:33,720 --> 00:41:37,200 And I think I've left enough time for questions. All right. Thank you very much. 381 00:41:37,540 --> 00:41:37,740 Thank.