Christie Margrave talks endometriosis, IVF, and the mix of emotions when a diagnosis comes decades after your symptoms first started.
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Transcript
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
So clearly I’m still not up to keeping a regular schedule, and I just want to acknowledge that. I’m shooting for biweekly but I’m publishing a little randomly whenever I have the energy. It is what it is.
And I don’t know how to talk on the podcast about everything happening in our communities because of coronavirus. I think it’s pretty obvious that this interview was recorded in 2019, before any of this was happening. That doesn’t change the importance of this story at all, but I found myself really startled by how much has changed so quickly in the world around us.
I know it’s impacting a lot of us in a lot of different and sometimes unexpected ways, and if you don’t have anybody to talk to about that, then I hope you’ll say hello to me on twitter where we’ve got a bit of space to honestly talk about all the fallout from this.
Anyway, this week I’m talking to Christie Margrave about endometriosis and IVF. This conversation was very technically informative but Christis was also really open about how this entire experience has felt for her. I think it will resonate with a lot of people.
And as a content note that might have been obvious, this episode includes significant conversation about fertility and pregnancy.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
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Note: The following interview transcript was generated automatically, and it will be updated as soon as we have a chance to edit. I’m so sorry some pieces are incomprehensible.
Brianne: So I like to start just by asking people how was your health as a kid?
Christie: my health was pretty good as a kid. sort of, especially as a young child, I had no more than, you know, the usual tonsillitis, few infections, and I’ve nothing to write home about really. my health was great. I guess my only problems really stuffed did when I got to about 12. Well, just the fourth, 12. so as a teenager, I had quite a lot of problems, with, what has now turned out to be endometriosis, but what, you know, wasn’t diagnosed for 22 years. So, I had a lot of problems with my periods, basically. was what I was always told. I was, and a lot of pain. I was bonusing, I’m fainting. I’m getting anemia all the time. so I was backwards and forwards to the doctor having blood tests, and backwards and forwards to a specialist as well. but I mean, at that age, sort of, they said, you know, she’ll grow out of it. and this kind of thing happens sometimes. She’s too young for us to do anything about it. So, yeah, until I was about 12. I was pretty good.
Brianne: and then did it kind of take off right away with your period, like your period came with difficult symptoms and side effects immediately?
Christie: the very, very first one I ever got actually is very ironic that it started just after a sex education talk. My buddy was sort of saying, Oh, this is appropriate. but. Yeah, pretty much. and yeah, so from the very first I was in quite a lot of pain. I missed, the rest of that day of school. because so I went to school, about an hour and a half away from where my parents lived. I used to get the bus to visit. My parents worked. I couldn’t go home immediately. so I ended up spending the day in lying down in the sick room. I’m feeling really ill and in a lot of pain. and fortunately there was a lot of help there. I had a really nice head of year. and the lady that had come in to do the sex education talk was full of free giveaways. That was pretty helpful too. and. Yeah. so yeah, pretty much from the get go. and you know, that wasn’t a particularly great one, but from then on, things just spiraled down with Bailey. within a couple of months I was fainting.
Brianne: Yeah. And did they, I know you said they were like, you’re really young. There’s nothing we can do. Was there anything that they did like, I mean, I guess they must’ve checked your iron levels if they told you you are anemic, but was there anything that they were looking for or did they have any suggestions for you beyond like take ibuprofen or something.
Christie: Really, I mean, they said, so they, Yeah, they checked my iron levels and they treated the anemia. and it was pretty bad, but they managed to treat it with iron tablets. I didn’t have to go into hospital. they put me on the pill, so the specialist put me on the pill, from being 12. and, they gave me Ponstan well, mefenamic acid. Same thing. It’s just basically a stronger version of labor, both. And yeah. so I was thinking, I’ve been taking that ever since. and I’ve worked reasonably well, I’ve got to say, it, controlled, how heavy things were, so I didn’t get any makers often. And it helped quite a lot with the pain. I didn’t completely get rid of it, but it made life functionable. and the older I got and the more the pain got worse, the more I realized that I could take slightly more than it said to take on the packet and still be okay. So I managed to regulate things. Okay. with that, they’d still be a lot of incident, a lot of embarrassing incidents though. And especially when you’re a young teenager, you know, you get . Bullied all of and stuff like that. and they’d still be incidents where, you know, nothing would work basically. and pretty much everybody who knows me really well has seen me at some point, either throw up in public or pass out in public or be in so much pain, I can’t get out of bed or, yeah. So that there were always times when, you know, nothing was going to work.
Brianne: Yeah. Yeah. And one thing I guess when as a kid it’s embarrassing and stigmatize and all of that stuff. And I feel like when you transition out of like a school environment into a work environment, you run into a whole new set of. Difficulty in managing, like how do I have a life when I also can’t function however many days, every 28 days. So what was that like going from high school to everything that came next? Basically.
Christie: Yeah, I, in many ways, I suppose I’ve picked one of the only jobs I probably could do. So I’m an academic, and a lot of the time I can work from home, not obviously on teaching, you know, teaching days or days when I should be in for. Informative meetings or, yeah, teaching is as the main one that I can’t really mess without having to get cover for. but as an academic, because I originally trained as a high school teacher, when I would have to be an all day everyday. And, as an academic, I, I don’t, you know, if I teach three hours in a day, I can go home and rest afterwards, or I can stay in bed until 11 if I’m just teaching in the afternoon. So it has a lot of flexibility with it, which makes it perfect. really. and obviously it also meant that a lot of the time, until I was 28, I guess I would student more or less. Aside from the one year that I worked as a high school teacher. so yeah, so, again, I could more or less work in my own time. A lot of the time it does mean that I don’t always meet deadlines. especially if the, you know. short term things. you know, if I have maybe a week to write an abstract for a conference or for a paper that I’ve written or something, I don’t always make it. friends and colleagues have been really, really supportive though. and particularly since I started telling people about the diagnosis. And. You know, and, I’ve had, I had two lovely callings recently that I was, I’m publishing an article. I was giving them an article for a journal that they were co-editing and they even helped me with, cutting words out of it because I was in hospital and I didn’t have time to do it myself.
Brianne: Yeah. Just not functional.
Christie: It’s a, it’s a supportive environment in that respect, and it’s a useful profession to be in. In terms of flex flowers. Yes. I’m very, very lucky. I don’t know that I would be able to constantly turn up to a nine to five job.
Brianne: Right, right. and then you mentioned diagnosis. So at what point did it go from like, you’re young, we can’t do anything. Like, you know, that you’ll stabilize or whatever they say to young people about this stuff
Christie: Yep.
Brianne: get used to it. We used to this debilitating pain
Christie: Mmm. Fancy lights actually. so things started to get a fair bit worse about where are we? 20, 19 and maybe late 2015, early 2016. so three or four years ago. where I started with some new symptoms, I was getting a lot of, IBS kind of symptoms. and I had to start, going for a run, which I totally, I’ve never been very sporty. but I did quite enjoy, you know, putting a podcast on and, you know, going out for a run. I stopped doing that because, I was getting a lot of intestinal symptoms.
Brianne: cyclical as well, or were they kind of constant
Christie: Staying. I don’t think they were actually, no. I think that that was pain that I was starting to get outside of my cycle. Here, you’d rather, yeah. By that point though, I’d more or less stopped going to the doctor. I’d kind of given up really after so many years of saying the same thing over and over again. and just getting, Oh, I’ll take the pill and you’ll be fine. You know, this happens to every woman. I’ll try you on a different pill. And, you know, for a while, those kinds of things did help a little bit. So. I thought, okay, fair enough. You know, this is what I have to do. This is what I have to do. and yeah, the most reasons, suggestion had been, well, if the pill’s not working, then you should really try an IUD. which I never wanted. and the doctor I kept going back to, you said, I don’t understand why you don’t want this, you know, this, this might really help you and I, the concept of a foreign body inside me all the time, especially as like just couldn’t bear to be touched, was just, there was never going to happen. And so I more or less stopped going. and, when I eventually did ask for some help, I just sort of was told her, we’ll take some bus. Kapan. You know, and things, it’s a little bit of, you know, IBS, things will settle down. They didn’t, and the vomiting got worse. And, yeah, I did manage to sort of control that fairly often with Bouska pan, but I was missing more work and I was actually having to run out a couple of times in the middle of my own lectures. yeah. So things only really started to improve actually this year. so from January, February this year, I moved out to Australia, to start a new job over here. and I started seeing a new doctor. I don’t know if this had anything to do with it, but I started seeing a female GP for the first time. or perhaps it’s just that awareness a little bit greater over here. And the very first thing that my new GP said to me was, do you think this could be endometriosis? And this is not the thing. I’m sure somebody would have mentioned that to me before. I didn’t know what it was, and this is just a brand new words. And I thought, well, actually I, somebody would’ve mentioned a disease to me if it could possibly be a disease. so anyway, she prescribed the medication I was used to taking, and I went home, I looked up this endometriosis thing and I went back a couple of weeks later and I was like, I think you might rewrite.
Brianne: Yeah.
Christie: No.
Brianne: sounds like exactly what I’m experiencing.
Christie: Literally down to almost the left. I guess there are only like maybe one, two symptoms on a list of about 12 that I didn’t have. And yes, as she referred me to another specialist this week, he’s like the third or fourth time I’ve seen a specialist. and this time especially said I’m pretty much 99% showing you. Do you have any charities? But obviously the one way we can plan that is through diagnostic laparoscopy. and they did that in July. and found that not only did I have it, but it was severe. It was everywhere. I had, , basically online, lot of bowel, everything was stuck to the side of my abdomen. My left ovary was this tangled mess stuck to my, insides. and I had, endometriosis patches everywhere. I had an endometriomas. so. Yeah. I came out of that with a little, Oh, correction report, sayings, tape for endometriosis and why did, why didn’t anybody pick this up in 22 years? So then I guess it was just another sort of spiral cause he, I mean, I expected, I thought I’d be going before going into the surgery, that either I would wake up feeling relief, I’m at a diagnosis or that I would wake up feeling, Oh, okay. Well it wasn’t that, what an ask could it be? I did. I woke up feeling scared and alone and completely overwhelmed, and just completely worthless basically because, I couldn’t make myself heard for 22 years. I’d been crying at valve and nobody was there. And yeah, because I wasn’t actually, originally I wasn’t allowed to talk to anybody when I was in the hospital, you know, like expecting somebody to come and discharge me. and they said, Oh no, it’s fine. You can just go home. Here’s the opera. And again, I burst into tears. Like, what is nobody going to come and explain what happened to my body? Like I don’t under, I was asleep. I don’t know what, I don’t understand half the words on this paper. And at the very bottom of the operation report, there was a slightly confusing section, at least for anybody with no medical background anyway, whereby there are a bunch of codes and things written next to the codes, but it doesn’t tell you that in order for that code to apply, not everything on the left has to have been done. So I was reading things like insertion of device for sterilization and smell. Oh my goodness. Well, like, what’s happened? You know? so I mean, I was, yeah, completely terrified. Completely frightened, and just felt like I really didn’t met this. So I guess, although physically things have been starting to improve, a fair bit since maybe August, September, mentally and psychologically, things have still been really difficult. They got worse for awhile and, you know, they’re, they’re a fair bit better now. I have a really good treating team around me and I’m seeing a psychologist to, to, mainly for counseling sort of sessions, just to help me come to terms with things. But yes, so that was a whole side of things that I hadn’t really expected to come out. I hadn’t really expected my mental health to be affected as much as it was by the diagnosis.
Brianne: Right. Right. Especially because, I mean, kind of like you said, you thought, this does sound like me. If it turns out that this is what it is, I imagine that it will feel like a relief
Christie: Yes, I really did.
Brianne: Yeah, and I think, excuse me, I feel like part of that, that it’s kind of. Unfortunately, universal is like exactly what you said. Like I have been talking to doctors about these symptoms for years or decades, and nobody even mentioned that this was like a possibility. And especially like endometriosis is increasingly looking like pretty common. And.
Christie: let me, sorry. They say one in 10 women have it, which makes it as common as diabetes.
Brianne: and it’s not, it’s not suggested. And I like, I actually did just get an IUD put in this summer because my pain is so bad as a, like, let’s start by trying this before investigating anything else. But it was the same, like my experience is really similar in that I’ve been talking about painful periods. Since I was a teenager and I’ve been given, in my case, a Neproxin prescription, which is also just like a stronger version of ibuprofen. But like nobody was ever like, Oh, have you heard about endometriosis? And I have now, and I know that you need a laparoscopy. So the, I was like, I will try the IUD before this other invasive thing in my case. But like. Why aren’t people asking about this? It’s not normal to be in debilitating pain with your period. That’s not a normal part of your period, but
Christie: no. It’s not right. I guess to be told that it is normal because it makes you feel inadequate. You know, that you can’t cope with it. That somehow every other woman in the world can cope with the same level of pain that you have. And you kind of, you know, you know yourself that something is not normal. Right. You know, you, you, you break a bone or you trip over or, I dunno, you have dental work or whatever and you know, it hurts, right? it’s not. As debilitating as, you know, feeling like the bottom half of your body has been molded by a crocodile or something.
Brianne: Yeah. And especially when there are the like secondary symptoms, I mean, like you’re talking about fainting and vomiting and . Still absurd. But it’s one thing when you’re just describing cramps and someone and saying, Oh, all women experience pain, and they’re just coping with it. And it’s another thing to look around and go, yeah, but nobody else is fainting from the pain. Or like, Nope. You know, like that’s not happening to most people that I know. So being told over and over again for decades that.
Christie: Right.
Brianne: Yeah. That you’ll get used to just like fainting in public because of your menstrual cycle is like, I have questions, but it’s not until you find out that that’s not normal, of course, that you are able to contextualize it. It’s so frustrating.
Christie: I M I S I’ve been seeing, actually, I, I’ve stopped seeing now, but for a little while I was seeing a, Physiotherapist, just for sort of neck sitting at the computer, kind of wrong problem. that’s, I mentioned at the same time that I had this tens machine and I didn’t know like where to put the electrodes and how well it would work and so on. and so he showed me sort of where it should set and how it might work. and, he asked me a couple of questions. he has a lot of clients. You have. Instead of severe pain with their endometriosis to the point where they can’t work. and, he said, how did you find out you had it? And I said, well, I had this diagnostic laparoscopy, where they wasn’t just diagnostic. Actually, they managed to remove quite a lot of it at the same time. And that he said, you know, sort of shook his head and said, I really don’t understand. You know, like with all the medical progress that they have these days, why they still have to do an invasive surgical procedure and cop people open to diagnose this condition. when they realize how many women these days, actually these days, they do realize how many women actually have it. and I, it was a fair point, you know, I’m not quite sort of thought about that, you know, he said it’s a real shame they had to do that. And I said, well, that’s the only way they can diagnose it. And he said, well, I know that, but why? You know, why is that no blood test? Why is that? I think, I believe that somebody has probably been working on developing one, but, yeah. Why is there no,
Brianne: or like ultra sound. It seems like something that you should
Christie: Mmm.
Brianne: realized we haven’t talked about what endometriosis is and I am assuming that most people know, but maybe some people don’t. So tell me what it means to have endometriosis.
Christie: So endometriosis is when, cells similar to the lining of your uterus or the endometrium, grow outside of your uterus. so in your abdominal cavity. so they could be growing on the outside of your uterus or on your uterine ligaments, on your ovaries, your fallopian tubes, your bowel, your bladder. There are even, I think, rare occasions where it makes it. And your chest or you know, elsewhere in your body, but largely speaking, it’s when it grows, I’m sort of in your, in your abdominal cavity. and those cells, attempt to bleed every month at the same time as you shared your endometrium. So, obviously there’s nowhere for those, bleeding cells to go. so they become inflamed, and cause a heck of a lot of pain. and, they can grow. and particularly if you end up with it on your ovaries, you can develop what they call endometriomas, which are cysts, basically of endometrial cells. So cells similar to the endometrium. And, they, if you sort of develop them for quite a long time, they are sort of dark Brown and they call them chocolate cysts. I think I’m sort of, old blood, I guess. So those, we often do show up on ultrasounds, at like any other cyst word or any other decent sized cyst would, but endometriosis anywhere else. More often than not. Doesn’t.
Brianne: Yeah. And so then back, because I have talked about it with a couple of people on the show before, but the two people that I can think of both had like a larger overshadowing issue. So in those conversations, endometriosis was like, Oh, and also this awful painful thing. so he just didn’t, I think, talk about the mechanism as much, but, but yeah, so to the point that, like right now the only diagnostic tool is like putting a scope in there to see if they can see that tissue, which. It’s
Christie: And if you’re lucky, you get somebody, like I did somebody who’s skilled at removing it as well. you know, you can deal with them both at the same time. You can get the diagnosis and you can have it treated. Which is great. but it was nice to be able to have the diagnosis and to know for sure. well you sort of sign up to, to have yourself could open, but
Brianne: Yeah. Yeah. Cause it’s one of those situations where like you have to, as you discovered with your paperwork, you like are consenting before you really understand the question.
Christie: Yeah. Which means you have a lot more questions when you wake up. as nice as they are and as great as they are at dealing with it. You know, that they’re very busy people, you know, and they’re probably delivering babies, you know, an hour or so later or something. So they don’t always Unquiet understandably half the time to go into any detail with you. and it’s a real shame because it’s not just a physically debilitating condition, that emotional instability one as well. particularly as most women who have the diagnosis have had it for several years. If not decades before finding out that that’s what it is. so you know, people maybe when they wake up from surgery, don’t always remember everything that everybody’s going to say to them, but what they do remember is how they felt. and more often than not, in my experience, the women I’ve talked to said that they work up and felt scared. They felt, you know, confused. Relief is not always the first feeling. it’s what happens next. how bad is it? What did you find? What did you have to remove? Do I still have all my working parts? and you know what an S did? These long Greek words on my operation report me.
Brianne: yes, yes. All of those questions. Yeah. and so let’s talk about kind of the ones that we can talk about answers too. So. So basically this, the laparoscopy is when you’re diagnosed and also when, as it turns out, they do, they remove some tissue. And so now that you hopefully have a little bit more information, what do they tell you after that? Like what does treatment look like? What do they expect? Kind of, how do they expect things to go from after that laparoscopy?
Christie: So I, and I think this is standard, I had to follow up about. Six and a half, seven weeks after their, laparoscopy, to go over the report with me, which I actually already been over with my GP, because I really needed help with it. and my GP was amazing. But anyway, yeah, so to go over the report and to tell you in a lot more detail what they found and even occasionally to show you some photos, which I found really helpful actually to know what it looks like. You know, it’s all right saying you have this thing, but it could have been Mickey mouse growing inside me. You know, it’s like really helpful to know what it looks like.
Brianne: Yeah. That it was real
Christie: Yeah, for sure. it does make it more real. and I, I don’t know if this is the case with a lot of people that you speak to, but I find it a lot easier to process something once I understand it. so yeah, so that was useful. and at the same followup, I was given two or three treatment options, which was great. so my gynecologist already knew that I didn’t want an IUD. that option was there, but she knew I didn’t want it, and there was no way she was going to push it. the other options were, so strong levels of progesterone. I’m going back on the pill, possibly or stronger version thereof. I cannot, I can only take the progesterone only pill, because I have migraines, migraines with aura. And so I had to stop taking the combined pill quite a long time ago. and obviously with now they know how I have endometriosis. It’s progesterone and that they need to control it with, anyway, rather than estrogen. then there was, basically chemically induced menopause, which I’m told is 100% reversible. but it’s still not something that I’ve ever been happy going with because, I don’t trust my body now, essentially, I think like, take this and run with it. I am 34. I want children. and you know, despite the fact that my periods have been debilitating and problematic, I’m not ready to lose sort of that part of my womanhood. you know, I’m, I’m not ready to, to finish being fertile, basically. and although they, as I say, they say it’s 100% reversible, I’m just not sure that that would be the case for me. As I say, I really don’t trust my body. so I was always going to reject that too. and the, the third option, option is probably the wrong way to put it both. So she said to me, you know, how they thought about, having children, you know, a new and a position where you think you would like to have children. And I said, well, I’ve always wanted to be a mommy, and I desperately wanted to be a mum. My relationships have largely been affected by the fact that physical contact is painful. Mmm, Mmm Mmm. Yeah, I’ve, I’ve had a lot of problems committing, not necessarily committing to relationships. I’m a, I’m a very kind of romantic and intimate person, but, wanting that sort of side of things. and yeah, it sort of, it means that a lot of relationships while at the first hurdle, basically. so I am single. so I said, you know, I’m not really in a position to have children unless it’s, three using, I spend on it. and, she said to me, well, look, given the severity of your endometriosis, following the, excision surgery that you’ve had, you have a roughly a decent six month window, in which to think about having children in which to try and get pregnant, pregnancy will help. And that you won’t be, obviously you won’t be menstruating for nine months. you won’t be producing. the hormones that cause you know, the, the grip of the endometrial cells within your abdomen. yeah, which basically what, what you want. so your other option if option is the right word, as pregnant. And I said, well, look, you know, I’ve always wanted to be a mum and if I’ve got six months in which to try and make it happen, let’s do it. So, yeah. What I eventually decided was to, go through the process of IVF.
Brianne: which is like, cause you’re absolutely right to say, can I get an option is maybe the right word, because obviously it sounded like an option that interested you. And at the same time, like. Very big deal that that is not a treatment choice. Right,
Christie: Do it as a treatment option. You do it, but that’s really one children. And because you’re told that you’ve only got a small window in which you might ever be likely to make this happen. but at the same time, I would have the advantage of, you know, calming things down for a little while.
Brianne: yeah. Yeah. And I want to actually like talk about that for a second. The first part. So she told you that there was a window and what makes that, why is that.
Christie: That is a great question that I’m not sure I have the best answers to not being a medic. but, what I, from what I understand, because of the, because of what they were able to remove, it means that, the, the damage is, sort of less. Less severe than it was, or the pain is less severe than it was. The problems are less severe than they were, but that they will come back. you know, no matter how much progesterone you take, and this is not a condition that’s curable,
Brianne: tissue will grow back.
Christie: yes. And there’s no guarantee of where it will grow back. you know, if it’s a, so at the moment, my left ovary is very problematic. It’s not really functioning very well if it were to happen with the right as well. You know, I might lose all chances of having children. my fallopian tubes currently work if endometriosis were to grow there and to block them, that would stop my ability to have children. so yeah, because it’s so unpredictable and because it’s completely incurable at the moment. this window, basically from when they’ve removed it, to when it really starts to create problems again is the best time to, yeah. So that’s, that’s what I understand. we’re watching that.
Brianne: they also, obviously like medically, I think don’t understand why either, but, but it’s that thing, like they remove it. Yeah.
Christie: But you know, given how right. She’s been with everything so far, to be willing to, you know, I have to trust what,
Brianne: yeah, yeah. And I just mean that, like they don’t know why it happens or like why it grows back. But obviously experientially can say like, here’s what typically happens. It starts to come back kind of at this, right. And if it was this invasive before, we can expect that after that time period. It will invade again. That’s okay. Strange language for me, but.
Christie: I’m lucky in that, I didn’t have a sort of, any, fibroids or any, growths within my uterus or anything. So my body is in a decent situation at the moment to be as decent as it’s ever going to be. It’s not perfect. but to be able to carry a child, you know, there are still doubts about that. you know, because of the endometriosis that I’ve had in the amount of time it’s been in there. Growing and getting worse. there are still obviously a lot of doubts about how successful it could be. Excuse me. yeah. it isn’t a better situation now than it was a few months ago, and it will be in a few months time.
Brianne: Yeah, so actually I still have more questions. So you said you’re in Australia now. And how is like health insurance coverage for this kind of stuff? For gynecology, gynecological house health. Oh my goodness. And
Christie: Wow. There have been a few articles recently actually saying that women in Australia spend upwards of, I think it’s $31,000, on the endometriosis. I’m, you know, medical bills, whether that be hospitalization, doctor’s fees, I’m medications, that sort of thing. was that the women spend that or did it cost the economy? That I can’t quite remember because I’m not, I think it cost the economy a lot more than that actually, because of the number of days that that women take off work. Yeah. but, yes, so. The situation for me here is slightly different than the situation for, sort of other, economic migrants from other parts of the world would be, and that Australia and the UK have a reciprocal healthcare agreement. which means that I have, Mmm. So, Australians have Medicare cards. and that means that that health care is, cupboard, largely speaking. By the government. Anybody that, charges above the level of what the government pays. Obviously they have to pay the out of pocket difference, but the vast majority of things are covered. My reciprocal Medicare card, which is a slightly different color, because, of my status as a Brit in Australia, again, covers anything that is, that can’t wait until you get home, basically. is there anything that’s urgent? and given that my contract over here is, well, several years, I was able to have the laparoscopy, On the public health system. So that didn’t cost me anything. it’s possible to see, GPS over here, that bulk bill, so that again, you don’t have to pay. I made the decision to, to see a GP who doesn’t build bill. but again, the out of pocket difference is very, very small. And it’s completely worth it. I think I would pay 10 times as much as I do to keep seeing like our GP, being the first one who ever actually listened to me. So, yeah, the, health insurance system, you can also obviously get private health insurance, which would cover, you know, all of those, all of those differences and would allow you to get treated in a private hospital as well. but I don’t have that at the moment until I get. hopefully I will at some point get permanent residency. then I’ll, you know, get private health insurance on top of it. But, pretty much everything that needs to be covered is covered by the, yeah. Bye some. Yeah. if you see a private, specialist, then again, you pay some out of pocket costs. which is what I do in order to see my gynecologist, you know, I can’t remember exact numbers, but say for example, it’s a $300 consultation. I might get, say, 160, $170 of that back with them things. So, yeah.
Brianne: gotcha. Okay. So I’m just always curious about that because it can be like, it can be so different place to place. so, so then before I interrupted you for a whole bunch of tangents, you said, so you decided that you’re going to pursue IVF, and have you started that process.
Christie: Yes. so I started that process in October, beginning of October. with the, follicle stimulating hormone injections, it turned out to be a lot more difficult than they had anticipated. and again, they’re putting this down to the endometriosis and probably quite rightly so, because I don’t know that there’s anything else to put it down to. so, Yeah. They were expecting or hoping to get between six and 10. I’m follicles, six and 10 eggs. by the end of the, the, the process. and I went for an ultrasound. So actually I went for a blood test about a week after I started having the injections. and they told me that I wasn’t really responding very much to their medications or they were going to increase the dose. So we did that. and then another. Not quite week after that, maybe five days after that. I went for an ultrasound so that they could, to ascertain how many follicles I produced, as I say, expecting hopefully around 10, maybe six. if it wasn’t looking so good and they found three. So I was pretty upset. and they said, your Dr. May want to cancel this. You know, there’s not a whole lot of point in charging you, you know, more than $10,000, for an egg pickup or an egg harvest if there aren’t going to be any. and, my gynecologist was very kind, and she called me in person, and said, you know, very gently. Look, I don’t ever see this getting any better. you know, your fertility clearly has been affected. and, particularly, you know, my left ovary was never really going to produce very much anyway. so let’s, you know, obviously it’s entirely my choice. but what I would suggest to you is that, you know, you do go ahead, with, Giving yourself the ovulation trigger and we go ahead with the egg pickup. and just see what happens. You know, hopefully each of those three follicles will produce an egg. No, I went into the hospital for, the like retrieval surgery. And, they, so they give you, they sedate you. They don’t, it’s not a general anesthetic, but I was out of it. I didn’t, I didn’t know anything until I woke up afterwards. I had this little sticker on the back of my hand, that said one egg. they’d only managed to get one. so I was devastated that it was bad news because the chances of one, making it all the way through the fertilization stage, the division stage, the blastocyst stage of very, very small. but also who’s devastated because I’d had bad news given to me with a sticker on the back of my head. Nope. Well, I wondered, especially after the, Operation in July, all I wanted was for somebody to break news to me in person. Again, I had to read it on this little piece of paper. so yeah, I told my GP afterwards and she’s like, you know, a little bit horrified. I have not heard of that happening before. so yeah, I was pretty upset. that, that, that’s, that’s how it had happened. and also obviously more upset by the fact that, it wasn’t great news. So, yeah, they, the fatality clinic were very kind, I went back there, a few hours after I woke up from the, at egg retrieval surgery, and they gave me the forms necessary, told me what was going to happen next. they were going to fertilize the egg doesn’t eat well. They were going to hope that the egg would fertilize the same day. They would put it in a Petri dish with 20,000 donated sperm, from the donor that I picked, and hope for the best, and call me the next day to let me know if it had been successful. so, my best friend stayed with me overnight. they don’t, they don’t want after anesthetic. They don’t want you sort of on your own. So, yeah. And another friend came over to spend some time with me in the afternoon as well. And between the three of us, we talk things through and I had some support and that’s really nice. And yeah, they called me from the fertility clinic the following day and said, the good news is the egg is fertilized. so we’ll call you again in a couple of days time. So this was on a Saturday. We’ll call you again on Monday, and let you know. If it’s developed any further, if it’s the life of the weekend. so that Sunday was the longest day of my life. they called me back on the Monday and said things were looking good, that I had survived the weekend. It was doing really well. It was what they called a grade one. embryo. I had to ask what that meant because I had no idea. and they said that there are four full grades basically. and the first three, transferrable. and the, only the first one I think is, if you wanted to freeze, it would be a freezing quality or grade one, two, and three, a D F decent enough quality for them to be able to,
Brianne: To implant.
Christie: Trump you. Yet in Poland. And, and yeah, again, they said, look, we’ll book you in for the, embryo transfer in a couple of days time. If you don’t hear from us again, then it will all go ahead. If we do call you in the meantime, it will be to let you know if obviously see that this embryo is passed away and you won’t be able to have it. and then they didn’t call. so on the Wednesday I went in and they did the embryo transfer. And then I had the longest nine days of my life after that. even longer than that first Sunday, waiting for them to do a pregnancy test. although I did buy one at the chemist, I didn’t dare take it. they, they say that, you know, for a few days it’s going to be too early anyway, and I was just, my body was useless. It was going to be negative, you know. No. And even if the embryo is very healthy and have a decent quality, my body was going to kill it. so I didn’t, I waited for the blood test. and anyway, it was successful so far. I am pregnant. I remember. And yeah, just hoping for the best. I’ve had a lot of cramps though, which they’re putting down to, the endometriosis still. sort of the, I know they say that it’s not unusual to get cramping, mild cramping in the first few weeks of the pregnancy. but these haven’t been particularly mild. so I was in hospital on Friday, so that they could do some investigations because I was convinced I was , you know, having miscarriage. but. So far, so good. It’s just, it looks like it’s, it’s more endometriosis cramping, so.
Brianne: Just like hormones are changing and that tissue doesn’t like that. Yeah.
Christie: it has grown back. all, some of it has grown back because the ultrasounds that they’ve done in the past three months have revealed, another endometrium on my left. yeah. Okay. There are still problems, but cross fingers, step boss it good? Yeah.
Brianne: Yeah. And like something that’s super striking, especially about your story, is that with endometriosis, it’s like there’s a couple of different things, right? Like there’s how it impacts your quality of life. For everybody that has it. And then there’s also how it impacts your fertility if you’re a person who wants kids. Exactly. And, and I feel like as you’ve demonstrated really, really well, the way that you try to manage it like is directly related to kind of what your goals are in both of those things. Cause they can be at odds with each other. And that’s difficult. Yeah.
Christie: London and don’t find out that they have endometriosis actually until they struggled to get pregnant. Okay. And that it’s infertility that, is the first thing that I’m sort of the adopters pick up on. Yeah. I am. And it’s, the fatality investigations that eventually reveal the reasons why they’ve had pain.
Brianne: yeah, yeah, yeah. That sounds familiar. I definitely know a few people who found out in that context, and that’s, yeah, it’s loaded it’s own way of course.
Christie: Absolutely.
Brianne: And so how was the IVF process, cause you did just describe it in a lot of detail, but basically it’s like you take a hormone to stimulate more follicles, which for anybody listening who has not learned that much about the cycle, that’s like the little nest that the egg develops in. So. We’re born with. Anyone who is born with ovaries is born with all of the eggs that they’re going to have. Right. And then they mature cyclical Leigh over your fertile years, I guess. and
Christie: yeah. Develop that a little, fluid-filled cyst basically. every month. Which your ag develops in, and when that little SIS bursts your egg, it comes out and travels down the fallopian tube and normal circumstances. and IVF, they give you hormones to produce more than one of these little follicles. Cysts. During the same month, and instead of, allowing an egg to appear in each one and burst and traveled down the fallopian tubes, they give you a second, didn’t know what you’d give yourself a second injection, which, halts egg production until about 36 hours before they’re ready to collect the eggs. And then you give yourself a trigger, injection. Which hopefully will, feed each of those little follicles that you’ve developed with the fresh egg, that they can then, use a needle to, to extract the fluids with the thing inside it. Yeah.
Brianne: Gotcha. And then to just like fun facts. Fun is definitely the wrong word, but a fun fact about biology, I guess is that, those little fluids that which I’ll have another name that I forget what it is right now. It’s something like long and probably Latin. Yes, Corpus luteum. And so that is, where the egg develops and PCLs, which is like a different gynecological condition. Polycystic ovarian syndrome, or is when those cysts don’t rupture. And so people with. The, like polycystic being many cysts. The cysts are not real assists. They’re actually just on ruptured. unruptured egg paddles, follicles. and then the other piece of just fond information, because we were talking about hormones so much, is that the Corpus luteum or luteus.
Christie: Yup. It’s alluded to lithium.
Brianne: Yeah. Corpus luteum is what produces progesterone. So that’s where people get the bulk of their progesterone, which is why if the cycle is disrupted in some way, people can become, like people with PCLs typically have high estrogen levels and low progesterone because their body is just literally, most of their estrogen source has been messed up. So, and that makes sense. Cause that’s such a, that’s like the end of the cycle when we produce progesterone. And so. If that’s being messed up in some way. Maybe that’s why taking progesterone helps in some cases, I don’t know, but just like diversions of explaining things that we’ve kind of talked about in passing
Christie: And I, I don’t understand much medic. but, from what I understand, endometriosis feeds on estrogen. And so, yeah, progesterone, helps to calm it down and helps to stop it. Developing quite so quickly. and, obviously helps with the pain for that reason too. Mmm. But yeah. so the, the last Eastridge and you’re producing, then, they’re, the less problematic, it will be. but obviously as you go through ovulation, you do produce estrogen. So if you’re having, injections to stimulate ovulation, then. Yeah. for a little while, actually the pain gets with yeah. Because you’re, you know, you’re encouraging, the, that, the hormone death, that causes things to, to problematize. yeah. although, you know, afterwards, if things are successful, then say it does come down, but yeah.
Brianne: And so now I’m just thinking of, right, so the shots, because I think everyone, and just in my own life on the podcast, everyone who I’ve spoken to who’s been through IVF definitely say that the shots are a real ride because of that, because of the hormones, of course. and then. Aye. The sticker. That’s unreal. To find out news that way or get an update on your own house, like that’s the most bizarre.
Christie: I can see to be honest a little bit why they do it and that, they know that when you wake up, you’re going to be groggy and they probably want to avoid you asking the same question 10 times, with your piece of paper before you leave the hospital with a number written on it officially. So even that would be enough to confirm it. it would have been nice, to, to have that broken to me gently.
Brianne: Yeah. They could tell you and then give you this sticker to refer to
Christie: Exactly. Yes. I think that would be a much better way of doing it. Yeah.
Brianne: and so, so it’s okay. I want to talk about this like, and I know that there’s some, there’s so much more to it than that. So I’m trying to like think about how I phrase my own words, but
Christie: Hmm.
Brianne: As we’ve already talked about, obviously like Craig, Nancy isn’t just a like tactical cure for a health issue. Yeah. Right. and so I want to talk about pregnancy kind of in both of those contexts. So pregnancy, you produce a lot of progesterone during pregnancy on this practical side.
Christie: you’ve done it. Yeah.
Brianne: Yeah. And so there’s like, as a way of, okay, sorry, my brain is really fried. So they had recommended it.
Christie: I see in the morning.
Brianne: no, it’s very early for you. Right. I actually am talking to someone else who is in Australia today, so I assume everyone will be groggy of different directions. so, so it’s from the, like. How, how this interacts with your body. Basically it was about like one, this can actually have an impact on the endometriosis itself because there it will be a time that is so progesterone dominant and that could be a good thing from your body to after the laparoscopy. If you have fertility goals, this is a good time because we removed so much of the tissue and it will come back. And three that endometriosis can also directly impact your fatality, like you’d said, because it can cause it can wrap around your ovaries. It can just like
Christie: Okay. Yeah.
Brianne: Yeah. So all of that is in play at once. And then how does it have any other impacts for pregnancy? Like you had mentioned that your cramping is still bad is obviously, I know you don’t know a lot of this, but what do you know.
Christie: But this, I have to find out a lot more actually when I have my next appointment. but having been in the hospital on Friday, they said to me, the, the, so they did obviously blood tests and an ultrasound to make sure that I wasn’t having a miscarriage. and they said they were very happy with both the, through the results of both of those tests. and that, All right. So obviously my first question was, well, what’s causing the pain? You know, this is not normal pain. This is quite intense. you know, when I woke up in the middle of the night, this is very definitely like a seven out of 10. By the time I got to the hospital and taken a few Panadol, it was maybe more like a five or six, but still, you know, it’s not. Mild. so they said, well, you know, all the markets are still there for your endometriosis. It’s likely that that could be what’s causing the problem. so I don’t know, to be honest, what the implications of that will be further throughout the pregnancy or in the initial stages of the pregnancy, whether it will cause cramping, that might, trigger a miscarriage. Oh. Whether it’s simply just means that the cramps that normally a mild in early pregnancy and somebody with endometriosis very often and not loud, I’m not sure, whether it’s something that’s simple, simply explained, or whether it’s something that is potentially dangerous for the baby. I don’t know.
Brianne: Yeah. Yeah. And I don’t at all mean to like fearmonger. I just am wondering kind of what, what information do you have going into this with this thing about your
Christie: No.
Brianne: you’re learning?
Christie: How would you like that be? To be honest? yeah. It’s not something that really, opinions and pregnancy books. Even those which are really great and do talk about endometriosis. and so there’s a famous Australian one actually called up the death, which I guess is the Australian equivalent of what to expect when you’re expecting. And it does actually have quite a lot in it about endometriosis. But even that doesn’t tell you, to what extent your endometriosis is likely to cause a miscarriage or is likely to cause you extended pain and the stage of pregnancy, whatever trimester
Brianne: Right? Just how they play together kind
Christie: Yup. And also how, endometriosis affects fertility, and slows down, you know, the likelihood of you being able to, conceive. Yeah.
Brianne: Yeah, and I would think, like one kind of to go in a slightly different direction for a second. One of the things about endometriosis, I feel like there’s a huge Instagram community. I don’t know if you’ve looked at that at all or spent any time there. and like, Oh, all directions with chronic illness, it’s a huge Instagram community full of like dietary and lifestyle advice that is maybe dubious. Like it’s very anecdotal of like how people, what people think has helped them, that they are now recommending as like universal. And so,
Christie: Yeah. I haven’t a lot of time on Instagram, but I have account encountered the same things on Facebook and, you know, other media outlets. yes. Particularly with forums. Actually, there’s a lot of, I’m going through this. Can I ask at the advice of other people, or, somebody who finds something useful and puts up a new post saying, Hey, everybody tried this. obviously not everything works for everyone. For starters. Mmm. And you know, the best advice you can possibly get from any of these is like, talk to your doctor before you do anything. you know, if you’re going to put yourself on some magic diet, you know, speak to somebody first because, yes, it might help, but. It might make things worse, you know, everybody is completely different. I found those forums both useful and not useful. certainly useful in terms of building a community, in terms of meeting other women who’ve had this, because I, until I had my diagnosis, I didn’t know anybody else who’d had it. which is partly, a fault of the. Social convention system, I guess that people don’t talk about periods that much
Brianne: Cause you probably do and you probably have,
Christie: and the matriarchs S you know, we’ve met friends, who have had it for years and who obviously don’t introduce themselves with that to you. and yeah. I’ve obviously met new people through forums, who have, you know, been looking for suggestions for doctors or, trying to, deal with the frustration of I’m being treated like a drug seeker when they ask for pain medication. I’ve not had that, very least to say. But obviously a lot of people do. So in terms of community and support, it’s very useful. there’s a lot of, there are a lot of problems that come with that though. For starters, you can never compare yourself to somebody else. Know if somebody else is taking the same medication you are and doing a lot better than you on it. It makes you feel down. And also, if somebody else sees the same, specialist you do, and gets, answers that you haven’t been able to get because maybe that they’re just not there in your case, that makes feel down to, Mmm. Yeah. Or you know, somebody else has been able to speak to somebody after their operation and you weren’t able to do that. Or even if, so in my case, I eventually was, but only because I got so upset that they didn’t Dell it leave the hospital in such a condition. that I felt very inadequate in the end, that I’d had to ask for something that I wasn’t technically supposed to have asked for. Whereas others I’ve spoken to have said, Oh, that was just normal. That was a normal state of affairs. Somebody came to talk to me like an hour after I woke up or whatever, or. And that’s after I woke up, even just for 30 seconds, just to say, we found it, but you’re going to be okay. so that level of comparing yourself with other people is probably never a good idea. that’s, that’s where the social media falls down a little bit, but you know, that’s, that’s just the way things are with it. You know, it’s another, that’s never going to change, you know, you have to take with this move basically.
Brianne: Yeah. Yeah. And I think like when you what, cause I agree. Like what, what can be helpful about it is even just. When you have that emotional reaction, kind of going to other people feel this way. Cause it’s less like what is the standard of care, which like you’re saying, you can kind of get into like weird conversations about that, but just knowing that you’re not the only one.
Christie: that’s him. But yeah, as you say, knowing that you’re not the one helps. I think the one thing that has. And again, and it’s, it’s a double edged sword in many ways. But, so a lot of my friends who, obviously have known that I’ve had problems with my periods for years, but none of us knew why, have looked into endometriosis since I got my diagnosis, which I found really kind and really helpful. Look things up. They’ve made themselves aware of what it is. I’ve got, and have sent me links to, you know, various, useful websites or articles or, episodes of radio podcasts or whatever, that have talked about it. And that’s been great. But it is, it is a massive double edged sword because, a lot of the links that I’ve been getting recently are to, BBC articles has been a BBC survey actually, that I took part in. One of the biggest thing I’ve ever done as far as I’m aware, of several thousand women. and, it’s leading now to, an inquiry in the UK, led by MPS, as to why, endometriosis has taken so long to diagnose for so many women and why it’s not as treatable or as researched, as something like diabetes, which is just as common. so those articles, although I find it Comforting in a way that nobody else will ever have to have, you know, go undiagnosed for 22 years. and kind of people descend to me. It. It breaks my heart a little every time I read them. because, when I’m looking at them and it’s average length of a diagnosis and seven or eight years, I think, well, you know what, that would be a 15 year improvement for me and I don’t really understand why it’s 2019. this inquiry is only just taking place. okay. Obviously awareness is much greater over here in Australia. Why has it not been in the UK? Why have the specialists that I’ve seen over the course of the last 20 years, not been exigent exiting specialists or not hunt? the inkling to suggest endometriosis to me. why is it not more commonly discussed. And with, within sort of the GP community, in the UK. Why was that not the first thing suggested to me, maybe not when I was 12, but when I was 22, or, you know, even back in 2015, 2016 when my symptoms started to get worse, why was that not suggested to me then? you know, the third or fourth time that I ended up severely anemic, why was it not suggested to me then? So, yeah, all of these articles are really great, and I think it’s wonderful. The BDC is doing this investigation or this survey of so many women, and they’ve, they’ve actually put videos out online. I’m interviewing several women with endometriosis, and I think it’s all great, but every time I see it, it has this psychological sort of impact of making me feel that that worthlessness again.
Brianne: Yeah. Yeah. Cause it is. It’s like it’s enraging and one thing that I also get really frustrated with about gynecological stuff that we’ve kind of talked about a few times. Like sometimes it will also, people often only find out when they’re going through fertility, like as you were saying, when they’re looking into infertility, but it’s also the fertility issues are not the biggest problem here. Like it’s the quality of life issues, and so I’m just as frustrated that like. A lot of discussion around it kind of is like, yeah, well maybe it causes painful periods, but like it’s interfering with these people’s ability to get pregnant and like, yes, and that matters. I am not saying that doesn’t matter, but like that is not,
Christie: It’s something that you know you desperately want and you’ve always wanted. But obviously, as you say, it has massive implications before that, and it probably wouldn’t have, I mean, again, I’m no medic, I’m not gonna, you know, don’t quote me on this, but I’m willing to bet that it wouldn’t have quite the same impact on fertility if people discovered it earlier.
Brianne: and cause you can make choices like.
Christie: Yeah, you can. and also hopefully you would be able to, you know, prevent it before it got severe. yes. OK. you know, you might not be able to prevent it completely. Of course not. it’s not curable. It’s certainly not right now, but you might be able to prevent somebody fallopian tubes from becoming blocked, or you might be able to. Get that before it was necessary to remove an ovary or whatever.
Brianne: yeah. Yeah. It’s all of this stuff is mixed up together. It is. Yes. And, and I wonder, like, cause I feel like I hear the same kind of general discussions here or in North America. I mean, I met. Like, not as my doctor, but I met a doctor, a gynecologist in Toronto recently who was like, my thing is that I want people to know about endometriosis. It is not that hard to diagnose, like really if you have debilitating periods, you probably have endometriosis and you should never be going for 10 years of not being able to function because your periods are so painful. Without someone bringing that up to you, that should never happen. And this was like her soapbox that she’s getting on, but because it. It shouldn’t. It’s a huge problem for a lot of people.
Christie: Yeah. energy, you know, you rightly say it. It isn’t just, it’s not just about the fertility, it’s about the quality of life. And that includes not just physical pain, but emotional pain too. And the longer you leave it, the worse those psychological problems become. And the worse they are when you eventually do have to confront them, you know, like full on. I, I’m confronting things now that I should’ve confronted when I was a teenager. Yeah. You know? If I’d known that there was a severe medical condition for some of the things that I ended up getting bullied for, I could have dealt with it a lot better back then. and you know, maybe you wouldn’t have had. The same kind of impact on my life that it did. and yeah, I know you can never sort of spend your time looking back and saying, Oh, if the past had been different, blah, blah, blah. but to some extent, that’s inevitable. You know, you always say, would my life have been improved? If, What would have happened if, and certainly when it comes to, you know, the desire to have children, as you say, you could, you could make choices if he knew, you know, wouldn’t necessarily have waited till my mid thirties, to think about having children if I’d known that. I was going to have fertility problems, you know, I could have started 10 years ago. knowing that it might take a long time for this to be able to work when I still reasonably decent egg reserve. you know, cause obviously on top of the endometriosis, I now have my age. so yeah. It is, it’s, it’s something that, it doesn’t just need to be dealt with in terms of pain, in terms of pain management, in terms of better diagnostics, techniques. it’s something that needs to be dealt with. Hmm. In terms of psychological health too. obviously the earlier you deal with things, the less you have to deal with difficult problems.
Brianne: And I think like on the most basic level. Like what really resonates with me with what you’re saying about those pieces is just like when you are in pain and experiencing kind of related symptoms as well, and you’re getting the message that it’s. Not being like you’re not getting the message that something is causing it, I guess. And then there’s all these like related ideas, which is that everyone’s going through this and you’re not handling it, or it’s all in your head because there’s no physical X-Plan. Like there’s so many kind of parallel things in there. And it’s not just how that shapes the time that you’re like, that time when you’re younger, it’s also how that becomes, or it can become. Like your own internal voice and so later, even when you do have an explanation, this is one of those things that I think like everyone I talked to is working through a version of this is like, I know now why it’s happening, but if I don’t, if I’m not vigilant about like recognizing my thoughts, there’s a voice in my head that keeps telling me like, just suck it up because that’s the voice that I heard when I was 13 or whatever.
Christie: Yeah. As you’re developing. You know, and this is sort of the, the sort of thing that I’ve been discussing with the counselor. it’s, yeah, I’m that developing voice as you call it, or trauma or whatever they want to call it, is what shapes you, especially if it happens at a young age or you know, as you’re developing as a teenager. and it is really hard to shake it off even though, you know, that. You should, and you know that you have been vindicated and that there is, you know, a decent reason, a medical reason for what you think going through. there is still this voice in the back of your head that says, I’ll come on. You know, you really need to be at work right now. You haven’t got to be laying here in pain. You know, you’ve got a deadline. or, you know, I’ll. Maybe my pain threshold is so much lower than everybody else’s. You know, maybe I’m struggling right now because what my, what I’m describing as a level nine pain as what somebody else would say was a level three or something, you know, it really makes you question what is mild, moderate, and severe pain. and it’s massively subjective.
Brianne: yeah, definitely. Yeah. And it did all, I’m just thinking about it. It all gets mixed in there. It’s like cooked into our coping mechanisms and our everything.
Christie: In the hospital on Friday, you know, how bad is your pain right now? And I was having the cramps. and I said, it’s about a five out of 10. and then I said, I know that doesn’t sound very much. but a, you know, I’m used to getting 10 out of 10 with the worst of my periods, and B, I would say a five out of 10 is. Enough for me to panic that I’m having a miscarriage. It’s not called mild pain. as soon as they, you know, Google or pregnancy books or whatever, say to you, as long as it’s not mild pain, that’s what, as soon as it’s not mild pain, that’s when you need to contact your doctor. So I know a five out of 10 doesn’t sound massive right now, but she’s like, no, no, no, no. This is your pain scale. You know, like nobody is gonna judge you. and it was really nice to hear that because I’d felt that for so long, people were judging me, whether it was directly or indirectly. Mmm. Just by virtue of not being taken as seriously as I would like. yeah, I did. I still judge myself.
Brianne: Yeah. And pain scales separately, depending on the practitioner are also not useful for all of the reasons you just described. And it’s like some people will never say 10 out of 10 cause they’re like, no matter how much pain I’m in, I can theoretically, yeah, I can always imagine more. And so I’m not doing it. And some people are like, I’m in such excruciating pain that I think it’s a 12 and I don’t think that either of those people are wrong, but it
Christie: No, I don’t remember.
Brianne: Someone. There are some people who never say higher than eight and there’s some people who scale actually goes up to 15 and so as far as information goes, it’s like imperfect. And like you say, especially when you were like, it’s a five out of 10 so I, which I’m not saying you shouldn’t need pain relief at that time, but you weren’t going in because you wanted pain management and you were going in because you were worried about this other, about your pregnancy. Of course.
Christie: They did give me morphine for the pain, very small amount. They said they actually helped me, worked up for more if I needed it, and they kept coming back and saying, how is the pain? Do you need more pain medication? I must have been asked about five times whether I wanted more pain medication. And every time I said, no. I was, as you say, I was not there as a drug seeker. I was there because I thought I was losing my baby.
Brianne: yeah. Which, and that’s a whole separate kind of complicated conversation about when they think that people deserve pain relief, but we can table that as complicated.
Christie: that? Yeah.
Brianne: And is there anything else about this whole thing that we haven’t talked about yet? Since we’ve gone through? Obviously we’ve caught up to the present, of course, with you
Christie: Yes. I think now, I mean, uncertainty I guess is the big one, but I guess we’ve covered that in several other manners. but no, I mean, I’m, I, I think, yeah, pretty much we’ve, we’ve covered most things.
Brianne: Yeah, we’ve been thorough. It’s usually the answer is no, I think, but sometimes people kind of are like, Oh wait. I know. I had one idea that I wanted to bring off and it just didn’t come up in the, in the narrative. So
Christie: not that I can think of.
Brianne: Yeah. Well, thank you so much for taking the very early in the morning time to talk to me about all of these things. It’s important.
Christie: Yeah. Thank you very much for talking to me about it too. I have to say this is one of the most useful things to do, actually, to, firstly, to sort of work up the courage to discuss this publicly, because until people do discuss things like this publicly, it will remain a taboo subject and it will become harder to get diagnoses, which is one of the reasons I love the fact that they, they’re starting to talk about it on the radio a lot more and to have, so that these podcasts are conversations, about it. And I believe that novels and so on and beginning to be written about it too. that is a really useful thing. but it’s also really nice and it’s obviously also really nice. Does that get the word out there? So that, some 12 year old somewhere who is collapsing and vomiting in public, and have to wait 10 years or 20 years, to find out what’s wrong with them. but it’s, it is also really nice just to chat, you know, just to know that, there are. Forums where you can say, look, this is how I feel. and I am massively appreciative of all the work that’s been done for me. especially in the last, like. Eight, nine months, and so on. and the treating team that I have now, the counselor, the GP, that gynecologist, the fertility clinic, the nurses, they’re all absolutely amazing. and it’s nice obviously to be able to, to give them recognition too. but yeah, it’s just nice to be able to sit here for like an hour row and I heard a half or whatever and chat about things that you don’t get chance to in like a 20 minute appointment or whatever. So.
Brianne: Yes. Cause I think most people, I’m in a weird position now where I talk to so many people about their health, but most of us in our daily life, like. Even with people who really care about us sometimes, like partly I think because if they don’t have an experience that relates, it’s like there’s a lot more explaining the kind of underlying stuff as opposed to just like talking about the experience and the feelings, if that makes sense. I, again, I’m kind of like foggy to them, but yeah, I, it’s important. It’s important to be able to talk about it and talk about it. Your experiences instead of always, I think people who advocate get in kind of a like a spokesperson place, and that’s important too, but it’s different.
Christie: Yes. Yeah. They’re absolutely two completely different ways of, of dealing with things. It is very important obviously, to, to make, government bodies aware and to make, you know, the, health care. The system in general, more aware of, of what women have been going through and to make the public aware, to make family and friends aware. that is, you know, absolutely awesome present, necessary, but there is always going to be this little personal sort of aspect of things that people desperately need to, to confront.
Brianne: Yeah. Yes. Okay, thank you.
[guitar riff]
Thank you for listening to episode 65 of No End In Sight!
You can find Christie on twitter @c_margrave and on instagram @cymru_to_canberra, which I hope I didn’t butcher too much. You can find me on instagram and twitter @bennessb and nd you can find this show on instagram @no.end.in.sight.pod.
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As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And also, my cross stitch pattern store, Digital Artisanal, is back online! I’m giving away unlimited free patterns right now with the coupon code NEIS.
Thanks for listening.