Transforming Pain into Purpose Jen Moore’s Advocacy for Endometriosis Awareness

Speaker 1:
0:03

Welcome to EndoBattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery. Grab your cup of coffee or your cup of tea and join me at the table as I'm joined by my guest, jen Moore, for a raw and vulnerable conversation.

Speaker 1:
0:52

Jen is an Indo warrior who, through her journey, found it empowering to speak up and build community. With the help of Instagram, she's become a passionate endometriosis advocate, championing for change not only in the UK but around the world. Jen recently started her next project in advocacy, called they Said what? Please help me in welcoming Jen Moore. Thank you, jen, so much for joining me today and I'm excited for our conversation. You are the first person from the UK that has joined me.

Speaker 2:
1:22

I am honored, doubly honored. Thank you for having me.

Speaker 1:
1:25

Of course, I was so excited that we were able to get in contact and to be able to do this because for me, I have a fairly good sense of what's going on here in the US and people's stories. But I've been following your story for a while and the reason I felt like it was important to have you on is because you have the perspective of being over in the UK having to deal with some of the trying issues of navigating care over there.

Speaker 1:
1:55

And then adversely. Your story is impactful in and of itself. Can you fill us in on some of your journey, Sure?

Speaker 2:
2:05

Gosh, never know where to start with that. So my journey started when I was 11, along with my first period, like so many of us, and it was just. It was awful from the start. I mean, I never knew fully what to expect, because it's your first one, but I definitely did not expect what happened. I was in so much pain, losing so much blood. I couldn't stand up straight. I was just curled up on the floor of my parents bedroom. It was horrific from day one.

Speaker 2:
2:35

So my mum took me to the doctors and they basically said you know, she's young, this will smooth itself out, she'll be fine. It didn't, um. So again she took me back and again they said look, she's really young, they're gonna even themselves out. She just has painful, heavy periods. They're perfectly normal and you know, if you really want to do something, here's the pill. This will sort her out, she'll be fine. So I went on the pill aged around 12, I think. Um, so I was very young when I went on the pill and there, 12, I think. So I was very young when I went on the pill and there was no follow-up, there was no investigation, there was no even try the pill and come back and have a review in a few months' time. It was literally just here's the pill, off you go. And that was my story for 22 years.

Speaker 2:
3:19

Pretty much Every single time I had a period or a bleed during those 22 years it was horrific. It was like horror movie scenes in the bathroom pain so bad that I would vomit or pass out. I'd be bed bound for a few days every month and, of course, I would go back to the doctors. So many people now are like oh, why didn't you say something? I didn't know you were suffering so much I did, I did. Nobody goes for 22 years and doesn't say something. I didn't know you were suffering so much I did, I did. Nobody goes for 22 years and doesn't say something. But every time I did, again it was. The painful periods are normal. Why are you so special?

Speaker 2:
3:54

Half the world deals with this. You know I had one woman when I said that it was stopping me from doing my job every month and a female doctor said to me well, I'm on my period right now. Of course, you can work on your period. Okay, that's great for you, but that wasn't for me. And yeah, that went on for 22 years until I think it must have been a bit of lockdown madness this is the only way I can really justify this is that during lockdown I realized that I had never experienced a natural cycle, really ever since I was 12. I had no idea what my cycle was or what it felt like to have a cycle. So I thought, well, let's give that a go. So I just stopped. I stopped taking the pill completely and again I wasn't sure what I was expecting, but it definitely wasn't.

Speaker 2:
4:46

But within two to three cycles, the symptoms that I used to feel, just within my period, they were every single day and I was basically crawling to the bathroom from my bed, screaming in pain. I had to give up my business, which I'd run for eight, over eight years. It just got to a point where I was using mobility aids because my legs would give way and it was just in so much pain. It was just. My life was completely pain. And you know, like in the Barbie movie where Ken's life is beach, my life was pain, yeah, and it got to a point where I was just like, right, no, I cannot live like this anymore. I genuinely cannot see a life beyond this.

Speaker 2:
5:26

So I rang up my GP. It was when you couldn't actually go to see someone still, because it was all over the thing and I'd written everything out, like absolutely every symptom that I was feeling anywhere in my body. Didn't matter if I thought it was related. I just wrote it all down on piece of paper. It was like two sides of a four and I just read it out. This poor woman. I don't think I even gave her a chance to read, let alone reply to anything. I just read it and when I got to the end she went quiet and she said okay, I think we need to sort a scan, um, because that's obviously not not normal, right? So I had a scan done, um, they referred me and I went for my scan.

Speaker 2:
6:02

It was a transvaginal ultrasound scan. It was one of the most awful medical experiences I've ever had. It was so painful. The person performing it was just so unsympathetic and was literally just like ramming this thing around in that because she couldn't find my ovary. So she was literally like jabbing it in trying to find the ovary, was literally like jabbing it in trying to find the way, um, and then she asked me to go and empty my bladder and I I did. You know, I am in my 30s, I thought I knew how to empty my bladder and when I got back she basically told me off. She had a go at me and said I told you to empty your bladder and I said I I did. And then she said well, it's not completely empty, do you not know how to use the bathroom? Oh my god, and I was just like, okay, so that's the day I learned I had bladder retention issues and that scan ultimately came, came back clear.

Speaker 2:
6:52

I got a text on half five on a Friday evening and I don't know about over in the states, but over here you cannot get a hold of a GP at that time on a Friday. They have all gone home. And so I tried to make this text said, um, that it was an abnormal scan and I need to call them sort of as soon as possible. So I tried ringing. They'd closed, gone home for the weekend.

Speaker 2:
7:14

So I had this horrible weekend of like, oh my god, what's what's happened? What's wrong on the scan and it. So I rang on Monday morning and the guy was like, oh yeah, there's, there's definitely something not quite right, but no further action is needed, it's fine. And I was like, oh okay, so what next? And he was like no, it's, it's fine, no further action needed. So I was kind of just like pushed off into the ether again and I'm really really fortunate not everybody over here is fortunate enough to do that but my parents basically said no, not having it very private, and we'll cover it. And so I went privately for a scan with a surgeon and there was some question marks over whether it could be cancer based at that time. So I went to see a gynecological oncologist and he performed the scan and he was the first person who actually said to me you've got endometriosis and also adenomyosis which I had no idea what it was at the time, but unfortunately now I know better.

Speaker 2:
8:08

He should have said there's no cancer. Unfortunately there's these things off you go to a great person who specializes in these. But instead he was like I can do that, I can sort you out, it's fine. So he performed a surgery in May 2022.

Speaker 2:
8:24

And he unfortunately ablated all of the endometriosis and again, I had no idea at the time. I was not told the differences or that it was important, so he ablated it. He also missed a huge amount of endometriosis, including like an eight by two plaque of endo that had wrapped itself around my ureter and was choking it and basically putting my kidney at risk of kidney death. But he missed that somehow. Um and he also put he was very, very insistent that he would put the Mirena IUD in um for the adenomyosis pain that I was suffering. He did say, if I tried it, I didn't like it wasn't helping, that we could then talk about hysterectomy. So I said, fine, okay, try it Again.

Speaker 2:
9:06

I didn't really know what I do now and after that surgery I was still in so much pain, so much pain. I think I ended up in A&E two weeks post-surgery because the pain was just through the roof. I know now it's because everything had been missed. When I had my post-op with him, I said all of this and he said to me Jen, jen, I'm the surgeon, I went to medical school, I know what I'm doing, you're good, you're good. And I said, okay, but I'm still really concerned about this adenomyosis pain. I would like to talk about the hysterectomy.

Speaker 2:
9:40

No, no no no, no, no, no, no, adenomyosis does not cause this much pain. I think now it's a little bit psychological. You need to look at maybe getting you some therapies and also being aggressive with your pain relief. So I walked out of there and I was furious. I was so angry but I thought, oh my God, this person's finally believed me. He diagnosed me and I thought he was kind of on my side and then I felt like I was back at square one and it was just so, so frustrating. Um.

Speaker 2:
10:08

So I found a second opinion and then, within a few months of that appointment with that surgeon, the second surgeon said to me yeah, he missed a lot of disease. There's still a lot of disease in there. We need to operate. Both your kidneys are now at risk and we'll do the hysterectomy because that's a very diseased uterus. Um, so that happened then one year, less than one year after my first surgery, which was last may, nearly a year today, wow, um, and then, yeah, so that's kind of where, medically, my journey.

Speaker 2:
10:41

I still have, unfortunately, a lot of problems with the endometriosis. I was in A&E a few weeks ago because of it, um, and I'm sort of being investigated now for like, bowel endo and bladder endo and whether all these things are back. But it, yeah, it's a little bit more difficult once you've had a hysterectomy. I don't know if you found this like when I went to A&E they said, oh, it can't be gynecological though, because you don't have your gynecological organs. And I'm sat there being like you're so close to realizing that endocenters should not be in gynecology.

Speaker 2:
11:14

Yes, um, so yeah, that's kind of my medical journey really, and it's sort of in between all of that, I set up an Instagram account because I, like we all do felt like I was the only one and I just, I mean, I felt a bit sorry for my husband, who must have been so sick of me talking about all of this 24 7 bless it. So I set it up to try and find other people in the same situation and this community has kind of bubbled up and yeah it's. I want to support them and validate them so much because their messages are just so so powerful and haunting at the same time and they're just so desperate for accurate information. And if I can try and provide that, because it's not that forthcoming over here in the UK then I will try and do that. So, yeah, I'd say that's my.

Speaker 1:
12:09

I don't even know if that was quick but I was going to say that was my quick journey, but I don't know if it was overly fast. I don't think anyone's journey is all that quick. I think you know, for people who are diagnosed and the delay in diagnosis there can't be anything quick about it. And I think you highlighted something so prevalent, which is the lack of knowledge amongst GPs and what's the lack of knowledge amongst healthcare in general? And then when they can't figure out the answer, it's all of a sudden back on us, like it must be us.

Speaker 2:
12:43

Yeah, yeah, there is no curiosity in health care. From my personal experience and the experience of thousands of others I've spoken to, there's no. I mean, I know there are individuals who are like this, but as a whole there is no. I don't know, but let me find out for you, or I'm not sure, but I know a great person who will, so let me put you in touch. Or even let's get to the bottom of this, because it might not be that your scan might be clear, but something's clearly going wrong. So let's get to the bottom of it.

Speaker 2:
13:13

And that seems to be missing from pretty much all of the healthcare practitioners that I've spoken to over the last 22 years. Yeah, and I don't know why, I speak to the clinical school at Cambridge University a lot, because I'm working with it on a project with them there and it's something they're really trying to instill. But what we're kind of not sure is what happens once they leave university and then there's something that drops off, and whether that's stress budget resource, we don't know, but there definitely needs to be something to discover that, because it's just not not there. It's almost like oh, your scan's clear, off you go. Or that blood test is fine, you're good, like there's no. So why are you in that much pain? Why are you losing that much blood?

Speaker 1:
14:02

there's just no questions and it's yeah, it's definitely a contributing factor to the delays, I think and I do think there's that calloused piece of it too, because I can't imagine for those who are repeatedly unsure of what's happening. They don't have the education they need and they're hearing these people come in and out of their office with the same issues, but it's all in their head. This can't be a systemic issue at all. It's in their head and kind of like emptying your bladder. It's in their head and kind of like emptying your bladder. There's a way to say something that is less hurtful and less triggering than it's your fault. And I think that we do hear this sometimes from providers, because they don't know how else to communicate what they don't know.

Speaker 2:
14:53

Yeah, and I think there's a little bit of ego in that. I think medical students by nature are very competitive, very driven, very um, you know, successful and intelligent, and so it's almost a bit of an affront if they don't know something. It's kind of like and I get that, I do get that. You know, I hate not knowing the answer to something, but then I'll go away and find out it's not. I wouldn't then turn it on the other person, but unfortunately what we're getting is that I know gaslighting is thrown around a lot, but it is a real issue in the medical community, especially with conditions like endometriosis, and it's almost using those tools of reflecting it back onto you.

Speaker 2:
15:30

It's like the gaslighters handbook. You know it's very victim, blamey language. Why didn't you speak up? You know we see all the time governments promoting their plans for women's health care and it's always let's educate the women and girls. Well, why don't we educate everybody? And why don't we educate the doctors so that they actually know what these conditions are and how to deal with them? Because we are speaking up, we're just not being listened to, believed, and then, when we are, there's not the appropriate treatment to have.

Speaker 2:
16:01

So it's, you're right, it's very much just twisted and turned back onto us all the time, and the effect of that is that we start gaslighting ourselves and we start saying maybe it wasn't that bad, maybe I just have a low pain threshold, maybe I'm just weak, you know, and it's all these things. And I know I certainly felt like that, especially when I was in school and I was kind of the only girl missing class because of my period. It was just sort of why can't I just deal with it? What's wrong with me? And I started to think there was something wrong with my head rather than something wrong with the rest of my body. It's, yeah, yeah, it's a real tough one and it's very deeply ingrained into the medical system and I don't know. It's actually really interesting how are they dealing with it over in the States, because over here we obviously have this centralized NHS.

Speaker 1:
16:52

You know, I think in some ways it's very similar, because I would say there tends to be a subset of providers who lack knowledge and who don't have the time to learn more or have the desire to learn more, and so I think that it can be very similar in a lot of ways, because you know you go to a provider here and they take your insurance. Well, they're booked back to back to back to back to back with patients, so they get 15 minutes in the exam room that insurance will pay, and so they're very much guided by the dollar bill. And that is where I feel like a lot of healthcare goes wrong is that they allow the dollar bill to guide the moral compass and ethics of medicine. And that's what's so tricky about this disease is that this isn't a 15-minute consultation. This isn't a 15-minute diagnosis plan. This isn't a 15-minute. We can help you with this. Help you with this. This is a hour, year long journey, years. I mean.

Speaker 1:
18:03

It takes a long time for us to explain our cases most of the time, and when you are young you don't know how to explain that. I can't imagine. I look back at when I was 15 and missing school during my period. How do you communicate that with a doctor when you don't understand it? You know, and I think about this disease as a whole, it primarily presents itself during adolescence, and so you're not even fully developed mentally, emotionally, physically, and so for us to be able to understand that at a young age is a lot to put on the patient and to put on the endometriosis patient for years, and that's when the formative years in our development start. So when you think about the trauma early on, you're developing with trauma, and so I mean there is an element of needing mental health support, but it's not in the same way as a lot of the providers have made it sound.

Speaker 1:
19:03

Our pain is real but it's also trauma is real, so I don't know. I think a lot of us are experiencing the same things. It's just the way that how we navigate our individual healthcare systems is a little bit different, because here we get to choose the doctor we want to see, whether we want to use insurance or not, or whether we have insurance or not, because there's multiple companies that have insurance here and different plans and everything else. But in the UK it's a lot different. How is it for you to navigate and for those overseas to navigate health care?

Speaker 2:
19:42

so ours is is quite complex in that we have this central national health service, or the nhs, which provides health care free, at the point of need, so you could rock up to any hospital if you, you know, needed A&E or ER I think you guys call it and you could get help. You've got GPs which are like the primary health care practitioners, so those are kind of like your gatekeepers. So you would go to your GP with presenting with symptoms, so with endometriosis you would probably go because, for example, you were experiencing painful periods at a younger age, and then they would decide whether you could be treated with medication, for example, or whether you need a scan, or whether you need a referral. So they really hold quite a lot of power. And then, if you then get a referral, you would go to a hospital where you would then see the gynecologist, for example, or, if gp knew what they were doing, an endometriosis specialist, um. So that's kind of like the nhs system.

Speaker 2:
20:40

Then we also have a private health care system where you can, either, with insurance or pay out of pocket, go and you can access. You can then choose your doctor that way as well, um, which a lot of people with endometriosis are turning to that, it doesn't mean they can afford to turn to that. Unfortunately, a lot of people are taking out loans, putting it on credit cards. I know some people who have taken out mortgages just to try and access healthcare because there is so much um delay, uh medical dismissal, um ineffective treatments being offered and promoted through the nhs. So there's a lot of reasons why people are filtering out to the private healthcare system, but that doesn't mean that they can afford it and so many people that isn't even an option to be able to afford it. So it's really important that in the UK we look at how the NHS is operating and how we improve access to it and how we improve the quality of what they provide. And you were saying about how in the States it's kind of the dollar bill really leads what's offered, and in a lot of ways it's exactly the same here.

Speaker 2:
21:52

The NHS is hugely underfunded. Gynecology always seems. I know endomet nhs is hugely underfunded. Gynecology always seemed. I know endometriosis shouldn't be under gynecology, but it very much is here for now. Um, and it's gynecology is always the one that is at the bottom of the pile. We have the longest waiting lists. I think a report came out recently that I think it's like 600 000 women are waiting for gynecology appointments in the uk. It's absolutely the nhs is on its knees.

Speaker 2:
22:17

Basically, it's an amazing, amazing thing and we should be protecting it. But it's also not a perfect system. It's a system that was designed by men, based on medicine and research done by men on men for men, very misogynistic structure, um. But that doesn't mean we shouldn't be protecting it because it is also amazing. But so, in terms of navigating it and accessing it, sometimes it is very much like we are trying to shoehorn a square peg into a round hole.

Speaker 2:
22:45

And you know, when it comes to our bodies, women's bodies, girls bodies, bodies with endometriosis, they're, you know, they're not designed to fit into this system. That just sees it as a period problem, which we know it categorically isn't. But that's the way it's seen and unfortunately, it's not even really taught in our clinical schools for future doctors. That's the project that I'm working on with cambridge university is to get endometriosis formally onto their medical school curriculum, because that's meant to be like one of our top universities, one of the, you know, leading ones in the world, and it's adjacent to one of our leading hospitals in the UK and one of our leading biomedical research campuses in the UK, and yet they don't teach anything about endometriosis, and it's so. If we don't even have our doctors knowing what it is and how to treat it, what hope do we have? Right?

Speaker 2:
23:38

you know, we're kind of like how do you even begin? So it's a very difficult system that is hugely under-resourced. It's filled with amazing people that want to do amazing things. They're just not really given the resource to be able to do that, and it's also a structure that is inherently historically misogynistic and that's something that I mean. How do you change it?

Speaker 2:
24:06

there are lots of people working to change it right but there are questions of do you, you know, metaphorically burn it to the ground and rebuild, or do you keep tinkering around the edges? And I don't know the answer to that. We're very lucky to have a system like that. You know, nobody in this country technically has to worry about accessing healthcare. That's the idea, and we are extremely privileged to have that, because not many countries do. But yeah, it's certainly not a perfect system and it is certainly not one that endometriosis is designed to operate within. It's not set up to support that very much, even we so we have these things called endometriosis centers, the sge endometriosis centers. They're kind of. They're held up as the centers of excellence for endometriosis care in the uk.

Speaker 2:
24:56

Now there are all sorts of issues over whether that's true. You know, the standards for what you know, the barriers for what you can call yourself one are shockingly low, to be honest, but that's a completely separate issue. But they sit under gynecology and that leads to a whole host of problems. Yes, one we know it's a full-body disease. So you're constantly being shuttled around a hospital to try and get to all these different appointments and and then sometimes months apart, years apart, the waiting list can be horrendous, and that's if you get one that actually believes it's a full-body disease. Um, I was in a recently and they literally said I've had hysterectomy but I still suffer with endometriosis symptoms. And they literally said to me it can't be gynecological because you don't have your gynecological organ. Um, yeah, I was just like you're so close to realizing, so close to getting it, but we're still not there wouldn't that be an indicator?

Speaker 1:
25:50

that's like an indicator. Well, yeah, you're having symptoms.

Speaker 2:
25:54

You know if everyone's having these symptoms still and have hysterectomies yeah, but so many of us are being labeled as drug seekers. When we turn up to any, for example, in so much pain, they're like, well, she can't possibly have endometriosis anymore, so she must be drug seeking, and that's kind of like, no, I'm just here because I can't manage this pain at home. So, yeah, it's, it is not a great system at all. And and then you also you. So you go to your waiting um room for your appointment and your endometriosis appointment, but because it's in gynecology, you're sat with the maternity waiting room and so when you're there, because you might be having hysterectomy or you're just having fertility troubles with this disease, and you're sat with all of these parents to be it's hard, it's hard. So even if you sort of take out the scientific, you know it just shouldn't be there.

Speaker 2:
26:48

The human aspect of it is not great either. Or I could talk about the state of the NHS for days is not great either. Or I could talk about the state of the NHS for days. Yeah, we kind of always brought up to treasure it, not question it. You know they're amazing people doing amazing things and we're lucky to have it, and it is true. But at the same time it is not currently fit for purpose, especially in endometriosis care, yeah, in my opinion, it's similar.

Speaker 1:
27:15

I would even say here, because you know, for us, even though we have access to insurance, a lot of endometriosis care not all a lot of good endometriosis care is private pay. So a lot of people are taking out second mortgages on their houses, they're taking out loans they can't really afford just to get proper care, and because here endometriosis is not recognized, the same for excision versus ablation, and so they'll pay out for a lot of doctors for ablation but they won't do excision, so excision's just not recognized really within the healthcare system, I mean within the insurance system.

Speaker 2:
28:00

You can access care, but not good care and appropriate care.

Speaker 1:
28:05

I think you can still access good care, depending on the doctor and depending on the education. However, if you want to see a surgeon who specializes in endometriosis excision, that's where it gets a little tricky, and there are certainly doctors that I know of that are phenomenal surgeons for endometriosis and do carry insurance. So it is possible. It just is dependent on if you want to travel, dependent on if you want to travel, and then also if that person takes your insurance or if they operate within your need set. So if you have deep infiltrating endometriosis, there might be surgeons here that do endometriosis, but maybe not to the extent that you would need. So it really is very convoluted within our system and it sounds very similar in a lot of regards to yours. However, I will say that I think here we do have a lot of great surgeons. It's just how do we access them, how do we afford them and how do we not wait a year and a half on the wait list to see them?

Speaker 2:
29:14

Yeah, the waiting lists are absolutely. I think the hospital that I'm closest to their current one is around 18 months to two years and that's for any endometriosis, unless it's, you know, really affecting a vital organ and you need to be in their asaps. That's the kind of standard waiting list that you would be expected to wait for and that's why so many people are turning to the private healthcare sector over here. But again, that's such a privilege that not everybody can do and can access, and I think sometimes we can be so in the trenches with our own journey and with our own environment that we sometimes forget that there are lots of other people that don't have access the way we have access. I think access is such a layered and complicated thing, so my access will be really really different to somebody from a lower income, a lower level of education, a different cultural background. You know a different cultural background, you know a different race, a different religious background. All of these things will implement how, or impact how we can access healthcare.

Speaker 1:
30:25

This conversation isn't over yet. We continue to be vulnerable with our experiences and the things that we've learned in our prospective countries. So join us next week as we continue in this enlightening conversation and, until next time, continue advocating for you and for those that you love.