Endometriosis and Pain, with Gabrielle Jackson

[00:00:03] So one day I was at my niece's swimming lesson. She's just my favourite person in the entire world and my nephew too In case they're listening You know, I was just watching there with my sister and my nephew and it was absolutely delightful

[00:00:21] If you've ever been to a toddler's swimming lesson, it's so fun This is a story about pain and it's told by a woman called Gabrielle Jackson And all of a sudden I just felt, you know, I start to feel a bit of sweat

[00:00:36] coming under my arms and at the bottom of my back and I just knew that I was about to have a pain episode Gabrielle has endometriosis It's a condition in the body where tissue similar to the lining of the uterus actually grows outside of the uterus.

[00:01:06] I was bent over, the severe pain just becomes so all-encompassing It starts in your pelvis but your lower back and your legs start to ache And then it would often be accompanied by severe nausea

[00:01:24] And I knew I had to get to a toilet so I kind of hobbled off to the toilet And I was sitting there for so long I couldn't move Swimming lesson finished, they had to come and look for me

[00:01:40] I was like, how do I get out of here? Usually I would always travel with a, I have a little make-up bag full of drugs Makes me seem like a drug addict but you have to be prepared And I didn't have it with me that day

[00:01:54] So I hobbled off out, tried to get into the car so I could get back to my sister's house and lie down because the nausea was so terrible And as we're walking to the car, you know, I've vomited in the car park

[00:02:07] My, you know, two or three year old niece and five year old nephew were like, oh, it's Gabsy okay? You okay? They were really distressed My sister had to ring my mum who's a nurse and find out what to give me and what I could take

[00:02:22] And then I just had to go and lie down in a dark room and not move I vomited again when I got back to my sister's You know that happened to me quite often Sometimes I knew that first bit of sweat

[00:02:38] then I could get home in order to lie still before it got too bad And that was just a factor of my life You're listening to Overlooked and I'm Golda Arthur This is a really mind-expanding episode about endometriosis and about pain in women

[00:02:59] Back in 2015, Gabrielle wrote a story about what was at the time a little known condition called endometriosis for the Guardian newspaper The response to that story was enormous and global Women wrote to her in the thousands And Gabrielle had more questions about this condition

[00:03:18] which affects one in 10 women in the world So she kept digging for information And what she found became the basis of her book Pain and Prejudice How the Medical System Ignores Women And What We Can Do About It Here's my conversation with Gabrielle Jackson

[00:03:40] Hi Gabrielle, thanks so much for joining me on Overlooked Thanks so much for having me Golda So let's start here We're going to talk about pain We're going to talk about pain in this whole episode And I want to start this conversation here

[00:03:54] Tell me about the moment you found out that you had endometriosis It was actually in a doctor's office In the office of a gynecologist I had suffered from really terrible painful periods since I was probably 14 So I would be sick all the time

[00:04:13] My mum would have to come and get me from school You know, the sick bay was like my home room And I had diarrhea and painful back And sore legs and bouts of incredible fatigue And no one could ever tell me what it was

[00:04:28] And it continued into uni It actually just kept getting worse and worse I had had the same GP for a long time General practitioner is like a family doctor And she was great I mean, she was a good doctor I liked her, she knew me

[00:04:43] But she just kept telling me Some people have painful periods You just have to put up with it Until eventually I just said I don't accept this as normal Sorry, please refer me to a gynecologist And she was like, okay Like really skeptical

[00:05:01] But just by a sheer coincidence Because she obviously knew nothing about endometriosis She referred me to an expert in endometriosis And I started talking in his room I was talking for about 30 seconds to a minute And he said, I think you have endometriosis

[00:05:19] And I was like, never heard that word before in my life And I was like, what is that? But my symptoms were so typical So typical that he knew almost immediately And it was incredibly frustrating I mean, you can't diagnose endometriosis Until you have surgery

[00:05:37] So he couldn't confirm it But it was frustrating that my symptoms were so typical That he knew straight away Well, you know, so after reading your book Pain and Prejudice What a book, oh my goodness Congratulations on writing such a stellar book Thank you

[00:05:54] I realized actually I don't know anything about endometriosis But one thing early on in the book just really hit me There were a lot of moments in your book actually, Gabrielle Where I was like, wait, what? Where you describe it as being stage four endometriosis

[00:06:12] And I have only really ever associated that term with cancer So when I first heard that term I thought, wow, you can stage endometriosis as well I didn't know that So it was all very kind of eye-opening for me And I just want to, I have here actually

[00:06:28] The bit in your book where you describe it Where you characterize what stage four was for you And you write deep infiltrating endometriosis Which had fused my uterus to my rectum and ovaries I mean, that is astonishing to read

[00:06:46] I can't imagine how astonishing it must have been to have Yeah, and it's really painful So what happens with, well, what happened in my pelvis Even after this, because the endometriosis grows back Is that all the organs in the pelvis end up sticking together

[00:07:03] And you end up with something called frozen pelvis And that's really painful because your organs are supposed to Not quite float around, but they're supposed to be free to move And that's how you respond to impact And when they're all stuck together and can't move

[00:07:20] That can be really painful And that's what happened to me And last November I ended up having a hysterectomy Because I also have adenomyosis Which can only be cured by hysterectomy They had to remove a section of my bowel as well

[00:07:35] Because I couldn't actually detach the uterus from the bowel So it can be quite debilitating and really painful But endometriosis without deep infiltrating lesions Can also be really painful The really complicated and challenging thing about endometriosis

[00:07:53] Is that the severity of the lesions that are found inside the pelvis Or outside the pelvis because endometriosis is commonly found on the diaphragm And has even been found in the brain Is that the severity of the physical lesions

[00:08:07] Don't always match the severity of the symptoms that some people have So some people have surgery and they don't find much endometriosis And so the doctor's like, it's not that severe for you Not all doctors will say that

[00:08:23] But it feels severe because the symptoms of fatigue and pain And a lot of people have irritable bowel syndrome A lot of people have dizziness, poor sleep Irritable bladder even Painful bladder syndromes a lot of people get So there are all these other symptoms that go along

[00:08:43] With having endometriosis or chronic pain condition That really are still being figured out as to why and what causes them As I was reporting for the previous season of ovarian cancer Learning that we just don't know that much about the ovaries Basically

[00:09:00] And I was hearing echoes of that here and reading in your book as well We don't know that much about endometriosis We don't know that much about it in terms of how it behaves And where it comes from It's because it happens to women, Golda Yes, because

[00:09:14] No one cares what happens to women Thank you That is the end of the episode Yes, it is because it happens to women And so you even saved me from like trying to figure out how to ask Your question that would get you to say that answer

[00:09:32] But tell me what you thought you had before You knew for sure you had endometriosis Yeah, I guess it just became such a mystery to me And even when I was diagnosed with endometriosis The first time I had a lovely doctor

[00:09:48] He gave me lots of things to read In my mind, I still kind of thought it was painful periods And so I had the surgery I felt loads better I started taking the pill without a break So I didn't have to have a period

[00:10:03] And that was really well managed Those kinds of symptoms for a really long time And I was incredibly grateful It really improved my quality of life But the fatigue never went away These other symptoms that I talk about of I think really intense fatigue that you can't explain

[00:10:21] Was the worst and hardest to live with But also, you know, I'd have these dizzy spells I would have sore legs, sore back You know, I saw physios for years and years telling them Oh, I've got this sore back because of this skiing accident

[00:10:34] I had when I was 19 And a constant cold sores, brain fog Like sore shoulders And for a long time, I just... I used to joke that I was a hypochondria I called myself that because I thought other people would be calling me that

[00:10:52] Because they were like, oh, Gavs, you're sick again Or, you know And not that my friends were mean about it I just knew that there were always things wrong with me That didn't seem to be happening to other people And it wasn't been embarrassing

[00:11:05] Because you don't want to be the sick girl You know, you don't want to be the person Complaining all the time Because that person is boring And no one wants to be friends with that person So I just thought I came to see myself as a person

[00:11:21] Who was a little bit weak and flaky And couldn't really put up with the hard things in life And it wasn't until I was in my late 30s I went to a conference that a patient organisation There's this wonderful patient organisation In Australia called Endoactive

[00:11:48] And they were just really quite angry It was a woman who was diagnosed with endometriosis And her mother They were really angry at the lack of information available So they organised this conference And they got Australia's leading endometriosis Doctors and researchers and nurses And physiotherapists into a room

[00:12:06] And they invited patients to come And just hear all the latest research and knowledge About endometriosis And I went that day And that's when I found out for the first time So I was first diagnosed when I was 21 And this was when I was 38 or I think 37

[00:12:25] And I learnt that the fatigue The back pain, leg pain The dizzy spells The irritable bowel Even the cold sores were all Actually very typical symptoms of endometriosis I was sitting in this lecture theatre at a university in Sydney And I just couldn't stop crying

[00:13:01] And when I left that day, at the end of the day I was supposed to write an article for The Guardian Who I was working for, there was a media person And I kind of went thinking, oh I know everything about Endo

[00:13:15] You know, I'm an intelligent educated woman I have to go Because no one else wanted to go basically And I couldn't even write the article I tried to call my mum And I, all I could do was sob on the phone And she thought something terrible had happened

[00:13:40] And she was like, Gabs, Gabs, what's going on? And I just wanted to say, mum, I'm not a hypochondria I'm not a hypochondria All these things that have always been wrong with me are real Sorry And I spent my entire adult life undermining myself And second guessing myself

[00:14:01] And you know, you do start to think you're a little bit crazy Because no one can explain what's happening to you And I really never thought I was a weak person I always kind of thought I felt strong But physically I wasn't

[00:14:19] And just to be told at that stage That no, this is kind of your disease It's just that no one was ever interested in studying it So you've had to suffer your entire life And I just was so angry

[00:14:37] I was so angry because there had been times in my life Where I couldn't work full time I just couldn't handle it And I just kept thinking what my career might have been like If I'd had a disease that people did know about

[00:14:52] If I'd had a disease that men also had Then maybe I could have had better treatment What prompted you to write about it for The Guardian? That day I just learned so much about the disease That I thought I knew about I'd had it for 20 years

[00:15:23] I thought I knew everything there was to know about it And I realised that day that I didn't And I said to my editor I have to write about this Because I thought I knew everything there was to know about this disease And I actually knew so little

[00:15:38] And if that can happen to me Then that can happen to anyone And so she said, yeah sure, write about it So she spoke to The Guardian's editor in the UK And she agreed So they put our health reporters in the New York Bureau

[00:15:57] And the London Bureau and the Sydney Bureau onto this story And we did a kind of global investigation Into how endometriosis is treated And as part of that we asked people to tell us Their experiences of having endometriosis And how they've been treated by the medical profession

[00:16:16] And we had a thousand responses in less than a day So I read all, every single response that we got And I just couldn't believe what I was reading And what I couldn't believe is no matter where you're from No matter how rich or poor you are

[00:16:37] Everyone was being told the same things Some people were actually told they're hysterical A lot of people were told they were Taipei personalities A lot of people were told it's because they delayed childbirth Or they were too focused on their career

[00:16:51] And a lot of people were called attention seekers They were told it's all in their head A lot of people were being diagnosed with mental health The conditions just told they're depressed or too anxious And I just thought what is going on in medicine

[00:17:08] If women from all around the world are being told these Sexist stereotypes Instead of having their symptoms properly investigated And that is what prompted me to look further And to write a book about it Because the investigation that The Guardian did was fantastic

[00:17:26] A million people read the main story on the day we launched it And I wrote a personal, like a first person feature About my experience and I can't tell you how many emails I got For years and years afterwards

[00:17:43] And the more I looked into it, the more curious I got Until one day someone told me Oh, it's because everything we know about human health Basically comes from the study of men and male animals And I was like, sorry, what? Wow, what? Yes

[00:18:01] How didn't I know this? And even now, a lot of doctors asked me to come and talk At their conferences and book clubs And doctors are not even taught this Another stunning moment from your book actually was

[00:18:16] Where you talk about, you know, in the context of pelvic pain Which is like so vague, right? Like pelvic pain, hand wave sort of thing A 2009 study published in The Pain Journal Is what you were writing about Found that men and women describe pain differently

[00:18:34] And that really blew me away Like down to our language Down to how we describe it Is vastly different So tell me, what's the difference? So this is really interesting because You know, medicine is made by men for men

[00:18:52] So all the language they use are the language that men use And the kind of language that women use Is like stabbing pains It felt like a knife was cutting through me And these are like dramatic You know, dramatic words, dramatic imagery

[00:19:11] And so a lot of doctors think Yeah, okay That's a hysterical woman talking there And these languages aren't really in the medical literature So immediately doctors think Okay, we've got one here So wait, so are men just like really flat about their descriptions?

[00:19:34] Yeah, they just don't use words like stabbing pains They just say dull pain But also men experience pain differently This is the really tricky part So women experience pain differently to men A lot of diseases are experienced different In women's bodies, which we're only just now Learning about

[00:19:54] But it may be that men don't have these kind of stabbing pains Or many fewer men than women have these kind of sharp stabbing pains But stabbing pains is so common among women To describe a certain pain in your pelvis

[00:20:11] That it's so, I couldn't believe what I read that study That that's considered dramatic language Because that's just very factual language to me That's exactly what it feels like So there's a big movement in some parts of medicine To actually categorize the kinds of words

[00:20:29] That women use to describe their pain Especially their pelvic pain So that it can go into the medical literature So that doctors understand what it means when they hear it And don't write women off because of that So maybe that men don't use that language

[00:20:44] It may just be that they don't feel it the same way I'll tell you what I find really tricky on this show Is really tricky to talk about all of this stuff Without having a pop at doctors And I don't think that we should

[00:20:58] I don't think that we should have a go at our doctors I think some of them are mostly just doing All they can do, right? It's hard to be a doctor I really believe that I think most people go into medicine to do the right thing Right

[00:21:13] And there are some people who are just not nice people Because we live in a world where there are people Who are not nice people That's right But don't you think that this relationship Between a woman and her doctor is so crucial

[00:21:28] It is a make or break relationship And I don't know anybody I don't know anybody who really has got it right Or feels like, yeah, it's great Well, I mean, I should say my partner's a doctor So I obviously think he's a wonderful doctor Who really listens

[00:21:49] But I do have a fantastic GP And a really wonderful gynecologist Who I do think have it right And I am coming from an extremely privileged position Because I live in a big city Where I shopped around until I found someone who listened to me

[00:22:10] And knew enough to find a gynecologist Who I knew actually cared about his patients And my GP really listens to me And she knows me better than anyone else So she refers me to people that she knows will listen to me

[00:22:27] She interprets the things I'm being told by other specialists And factors them into my life And makes sure all these things that I'm getting Are not counteracting each other But studies do show that if you have a doctor who listens to you Your symptoms can improve

[00:22:46] It doesn't mean that you're suddenly cured Because someone listened to you Of course it doesn't But it does make a massive difference to the quality of life But on the other hand You are right There's no perfect relationship Because medicine lacks so much knowledge

[00:23:04] When it comes to women's health And that is a huge systemic problem That can't be easily fixed There is a massive knowledge gap Most doctors still today don't even know About the gender knowledge gap in medicine They are taught that women are a little bit hysterical

[00:23:21] They're taught to be on the lookout for hysterical women And still to this day Young doctors are coming out of medical school Going into emergency rooms And diagnosing women with anxiety And sending them home When they have major illnesses without investigation

[00:23:40] My partner still has to say to young medical students What would you do if she was a man And their whole approach changes So what are they being taught in medical school And what is society telling them about women's voices Yeah it's such an interesting

[00:24:03] It reminds me here and you say that Is when my mom was in the hospital for the first time And she was first diagnosed with ovarian cancer I started to ask why the doctors I started to ask the doctors why I would say to them

[00:24:16] Why are you choosing this instead of that You know I was like I wanted to find out what the decision tree was And there's me with zero medical background I think I got a B minus in biology in school or something

[00:24:28] So it was really it was challenging for me It was challenging for them And I just thought there's got to be a better way to do this But you know I don't think they were accustomed To being asked why Oh no Why is a big question right

[00:24:41] Because it's like so much of medicine I know now I didn't know then is a judgment call It could be misinterpreted as you know a challenge To that judgment when really all I was looking for Was a way to understand how they were sort of thinking about it

[00:24:57] So I think you're absolutely right And I think there's I think things are changing And doctors are doing that a little bit more now But certainly it's not the norm still I don't think There's this wonderful researcher in Australia A woman called Zoe Weiner

[00:25:15] And she has done a lot of research into heart attacks Because you know we know that we know that Yeah women present differently to men often with their symptoms And there was this 2018 study that found that People having a major heart attack What's often called a widow maker

[00:25:35] They studied it in tertiary hospitals in Australia So really big teaching hospitals They found that half the women presenting With this kind of heart attack would be treated properly At the time of presentation And they were twice as likely as men to die within six months

[00:25:54] Medicine has known for over a decade now That women have different symptoms to men And so she wanted to find out like why it was happening And she actually went into hospitals where all the doctors knew That there are different symptoms in women and men

[00:26:09] They all understood this And they were still having different outcomes with women and men And so she's like really trying to understand what's going on here So it's good to know that someone's trying to work it out But it's really naughty to understand Because like you said before

[00:26:30] It's not that doctors just don't care There's something happening in our society That means that we're just somehow can't listen to women In the same way that we listen to men Yeah if you look even if you look at that language

[00:26:44] The fact it is called a widow maker Yeah because it kills men Yeah and so they're gonna be left with a widow It's hilarious really Right yeah down to that If you want to laugh at it otherwise you can cry You can cry you can actually

[00:27:04] You can really you can just spend a lot of time crying over this stuff right So I want to I want to finish up by asking you It has so much actually this overlooked in women's health broadly What do you think is most overlooked

[00:27:42] And where is that inequality felt most deeply or most intensely Oh that's a really hard question because it's so wide ranging the way women's health and the way Diseases that are predominantly or solely

[00:27:58] Experienced by women are treated and I obviously think chronic pain is a major issue for women And there's so little treatment for that That I think that's a really major thing we have to look at Because I think so many things are related

[00:28:22] To how women experience chronic pain differently to men And even things like fibromyalgia long COVID chronic fatigue syndrome or ME I think there's something happening in our immune system That makes women more likely to have these conditions Incidentally a lot of doctors don't even believe in them

[00:28:46] That I think if we understand what's happening with information or the female immune system that is Creating these kinds of symptoms it could be it could unlock So much mystery about women's health But there has to be the research

[00:29:03] There's just not nowhere near enough research money going into studying these things You know medicine has known for a really long time that the female immune system works a bit differently to the male immune system And you know multiple sclerosis was once considered a hysteria

[00:29:22] They didn't believe it and then when they they did know More men were being diagnosed with it with women because the women who came with those symptoms were being written off as hysterics

[00:29:33] So it was only when they you know were able to diagnose it accurately. They were like actually More women have this than men So I do think there's there's something to do with the female immune system that needs to be studied

[00:29:48] And a lot of money needs to go into it Gabrielle, thank you so much for talking to me today. It was like just this full rich conversation And just really intense just just the way I like it

[00:30:02] So thank you so much. Thank you for sharing with me. Thanks so much gilda We're building a community around women's health so that no one is overlooked If you'd like to be part of it hit the follow button on this podcast wherever you're listening to this

[00:30:20] Or head to overlooked pod.com to find out more Overlooked is written and produced by me golda arthur Jessica martinez. Yo's is the show's associate producer You can get in touch with the show by emailing overlooked podcast 23 at gmail.com Thanks for listening