Uncovering Inequalities in Endometriosis Care: A Global Discussion with Jen Moore: A Continued Discussion

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 my guest and I, Jen Moore, at the table as we continue with our unfiltered conversation. Just as a reminder, this is where we left off and where we're going.

Speaker 2:
0:55

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, a different race, a different religious background. All of these things will implement how or impact how we can access health care, and I get stories every single day from people saying things along those lines that there was one lady in India and she actually gave me permission to share this and she messaged me saying that she was refused a transvaginal ultrasound because she wasn't married. So she was an adult, but she was unmarried and they refused to even perform one on her. So she couldn't even get past that kind of level to get to the next level she was. It was just an immediate no, so she was sent away and told deal with it why would a race, a religion automatically disqualify you from proper care?

Speaker 2:
2:08

religion automatically disqualify you from proper care, like it shouldn't. It shouldn't, but racism and bigotry means that it does. And I think black women are twice their sort. Of wait to diagnosis time is likely to be twice as long here in the uk. I don't know about elsewhere, I'm sure it's the same. You know they could wait twice as long as I did, purely just because the color of their skin and outdated ideas that they feel less pain than we do, or you know all these other things, and it's just.

Speaker 2:
2:34

It is so wrong. Yeah, so so wrong. And I think I do think it's really important that, no matter how difficult my journey was and it was an exceptionally difficult journey to get access to health care, it was way too long, 22 years no matter how difficult that was, I didn't have those other barriers. That puts me in quite a privileged position. Obviously didn't feel like it at the time, but I do try and remind myself of that, because I'm just humbled every day by messages telling me how difficult it is for people all around the world, but in the UK. How difficult it is for people all around the world, but in the UK, how difficult it is for them to access care.

Speaker 1:
3:08

Absolutely. I mean, I think that's true around the world. Care for endometriosis is so hard and I do think that those who specialize in endometriosis and excision of endometriosis are doing their absolute best to meet patients where they're at. But it's hard because you're seeing patient after patient after patient and these doctors, especially in the US, still have to keep the lights on and they still have to feed their families. So I understand why they have to do private pay to be able to afford to practice. Otherwise it becomes really not advantageous for them to do it, because they can't pay their staff. And you want a good staff when you're dealing with these high intensity, high complexity surgeries, and then you also want to be able to make a living, but you also have this passion and this drive to help those with endometriosis, so it becomes a very complex issue that they are dealing with and they're confronted with on a daily basis. And then they get the patient backlash, so to speak, because they're like why do I have to pay so much for the surgery? Shouldn't it be covered by insurance? Well, ideally yes, but because of the way that our healthcare system works and the way that the insurance system works, it's not and it comes down.

Speaker 1:
4:27

So here with insurance, they have billing codes and the billing codes are the same whether you do excision or ablation, whether you are a general GYN or if you're a specialist GYN. So the billing codes for insurance are the same. But that's like saying an oncologist who does breast cancer oncology is the same as doing prostate oncology. They're very different subsets but they're still oncology. So they're still doing cancer, but they can't operate on prostate when you're a breast cancer surgeon, you know, or an oncologist. So it's very similar to that, but the codes just don't align with it. So it becomes a restrictive measure for both the doctor and the patient. And there are certainly quite a few still that are trying to work within the healthcare system and take insurance. So again, I think true, specialists are doing their absolute best to meet patients where they are. It's just really hard across the board.

Speaker 2:
5:30

Interesting. There's an interesting parallel actually in the UK in that obviously if you're an NHS surgeon you get paid by the NHS, so you don't have that needing to keep the lights on. But I've spoken to quite a few endometriosis surgeons who do private as well as NHS and I asked them why they do that. Because again, they get often get a backlash like well, shouldn't your time be in the NHS? You know, we've trained you in the NHS, why are you now profiting off it?

Speaker 2:
5:57

And they say they actually said something so interesting and it was because we weren't allowed to offer the treatments that we wanted to and that the disease requires with the nhs guidelines, and the nhs guidelines was very much ablation is fine, surgery isn't really required for the vast majority of cases. You know they're fine, hormonal treatments are best. You know all these kind of things. And they were saying we're not allowed to practice the kind of medicine that we actually want to practice in this specialism unless we do it in this environment and unfortunately that is in the private sector. So there's an interesting parallel, like you say, and I work with clinicians a lot and I always say they don't go into medicine to make your life miserable.

Speaker 2:
6:42

There are so many easier, quicker, cheaper ways than getting a medical degree right if you want it to make someone's life a misery or harder or be sexist. You know all these things. They don't do it. They go into medicine because they're either really fascinated by it or they want to make a massive difference, right? So I always try and remind myself of that and I mean there obviously are just some misogynists practicing in healthcare. They're just are, but the vast majority of them are just. They know what they know, right, and they don't know what they don't know.

Speaker 2:
7:16

But how do we fill in those gaps? And how do we do it with empathy? Because if you've been doing a 12-hour day in an operating theater and then somebody comes at you and says, you know, you've made my life a misery, you've done this wrong, you didn't listen to me all very, very valid things, right, but of course the reaction is going to be defensiveness. So it's, how do we do we get into this system and try and diffuse this historic baked in sexism so that they can actually start to believe us when we go with our symptoms? If we can get them to believe us when we go, how different would that be? That would be amazing, wouldn't it?

Speaker 1:
7:56

It would. And you know, I think that is kind of at the core of a lot of the issues surrounding endometriosis is that it's definition at its core. What it is, its definition I mean truly, and I don't understand the challenge with this is that it is so ingrained. It is so ingrained within the medical system abroad. I don't think this is specific to country. I think this is largely misunderstood, and so that is where education kind of gets a little gray, because when you start with the wrong definition and only touch on it in medical school for a period of like two hours maybe a day, you're going to miss an entire subset of disease yeah, I actually went and sat in the university of cambridge medical library.

Speaker 2:
8:50

I went and sat in there and it had they have a whole gynecology stack and I sat on the floor in between these two stacks and I looked in every single book, every single. There was a lot. It took me like three days and I can count on one hand the number that had correct definitions of endometriosis. Three days worth of books, one hand. And out of those I think that am I right in saying only one? I'm pretty sure it's only one then went on to give correct treatment options. So even the other ones that had the correct definition. They then went on to give correct treatment options. So even the other ones that had the correct definition. They then went on to give misinformation about how to treat it. They went on to say a hysterectomy is a cure. There was one book in this whole entire library and the hysterectomy doesn't solve like thoracic endometriosis.

Speaker 2:
9:41

It doesn't solve diaphragmatic or any it doesn't solve it, or bowel or bladder or any, I mean, unless you have it on your uterus somewhere on the outside, it's not solving it.

Speaker 1:
9:53

No, but I mean just even thinking on a logical scale, like it just does not make sense. And it was interesting because, you know, I had Dr David Redwine on right before his passing and he will be greatly missed. But just when he even brought this up, he's like it doesn't make logical sense because the way that the body is formed and I just sat there, it was so funny in that conversation, he just was so passionate about it, but it was interesting because he was sitting there he's like why can't we think outside of the uterus? Because he was sitting there, he's like why can't we think outside of the uterus, you know? And, and it's so true, because just the way that our bodies are formed, it doesn't make sense to just cut out the uterus, like just here we are, extra piece of black market material, like it doesn't make any sense and it's always talked about so flippantly as well, like before mine.

Speaker 2:
10:44

The surgeon hadn't noted it on the sort of what they were going to do the plan and so I called and I said, oh, I've noticed the hysterectomy is missing. And he was like oh, it's fine, don't worry about it. Three cuts straight out 20 minutes. Don't you worry about it, we can add that. And I was like you're talking about my organ, not just my organ, but my like. Have a little bit of compassion or respect or something like I was. So about it, and so many people have said the same that it's just kind of like oh, yeah, we'll just get rid of that, that's fine. Like it's a piece of you know, I don't know, like junk mail or something.

Speaker 1:
11:21

Right. It's treated that way a lot of times and yet they will be so ready to get rid of that organ, which means a lot to us, but not the disease. It just doesn't compute for me on why that's the case. But again, I mean, I think I look back at my journey and the misinformation I was given and it came from a place of wanting to help me but with the lack of information or knowledgeable, accurate information, and it is an issue. It's a huge issue and I think just in our conversation we're realizing it is everywhere.

Speaker 1:
11:58

It doesn't matter where you live, it doesn't matter what healthcare system you live in. It is a very, very big deal. This is hard for everyone, and then you add additional components to that, whether it's race, religion, sexual orientation, all of that and that makes it increasingly harder to get good, proper care, and along the way, it's not hard to gain more medical trauma.

Speaker 2:
12:26

So yeah, collecting it. I think yeah. My husband always says, like you're collecting it, like pokemon, you need to stop. But I don't want to collect it though they just keep throwing it at me yeah, it's the gift I'll give back.

Speaker 1:
12:41

Can I re-gift this?

Speaker 2:
12:43

yeah, yeah, definitely Leave the label.

Speaker 1:
12:46

Right, yeah, it's the one thing I don't want to take the price tag off of and pay.

Speaker 2:
12:50

Yes, yes, you have the receipt, please For sure.

Speaker 1:
12:55

Which is true. I mean, like it's so funny that we're joking around about that, but at the same time, you're like you should get a receipt, aka your medical records, from your providers and be able to look back and understand what was done and what wasn't done and have a better picture of your overall health. So if you need to see another provider, you do have that to say look, I've already gone down the road that you're telling me to go down. You need to come up with a better solution and better knowledge around care so that we don't have to go down this road again, because I do think that a lot of us are confronting more and more practitioners. It's whether they're open to that confrontation and learning A hundred percent yes, and we are fully within our rights to do so.

Speaker 2:
13:38

I mean, there are bodies, at the end of the day, and if we're not being the proudest advocate of our own bodies, then we can't really expect anyone else to be either. But there it has to be met with a decent level of education on the other side as well. It's kind of like a two-way arrangement. We should be able to go in and say what we want and what we think is going on and all these kind of things, but they should be bringing up-to-date education to the party you. It shouldn't be a one way street in either respect. Yeah, so I do like you say.

Speaker 2:
14:08

I think we are getting to a point where we've just had enough and we're just refusing to internalize it anymore. You know, with medical misogyny, for example, we're just expected to put up with it, to access care half the time. We're just expected to be told you know, you know, oh, it's just a bad period and it's just that we're just continually absorbing this and internalizing it and normalizing it and we have to reach a point where we say no, enough's enough. Yeah, and for me that point was before my hysterectomy and the surgeon who thankfully did not perform. It said to me me, jen, I've got three kids. Maybe the fact that you can't have any will balance out the environmental impact of mine.

Speaker 2:
14:49

Wow no yeah, this was shortly before my hysterics, me. So I just I focused on healing and I focused on getting through that surgery and that recovery. But the whole time that that interaction just kept circling back into the front of my brain and I, just when I was strong enough, I just said no, I'm not internalizing that one anymore. And I thought for a while I was like, how, what do I do with that? Do I go to pals, which is like our NHS complaint sort of system? Um, but he has openly mocked that procedure to me, the pals procedure, so I'm not going to do that because that obviously means nothing to him. And I kept going around, what do I do with this? And in the end I did what? The only thing I know how to do. I set up an Instagram account. Um called both, said what, and I thought do you know what? This is bigger than me, it's bigger than that one man, it's bigger than that one comment.

Speaker 2:
15:45

So I started a project to collate and bring into the light this phenomena of medical dismissal and gaslighting across women's health care, not just random metriosis and the response has been humbling and harrowing and enraging it's. We've had hundreds and hundreds of submissions already, and the idea with it is that we will then compile them and take them to the people in charge and try and get them to wake up and realize what's happening, because it isn't about just a sexist surgeon. It's something that is so ingrained into our medical system that they think it's okay or they don't even realize that they're doing it. But that's worse, in my opinion, if you don't even realizing that you're being like that. I mean some of them, though it sounds really awful when I say this, but some of them make you laugh, not because they're actually funny, but because they are just so ludicrous. There was one woman who went to her GP because she was having adenomyosis symptoms, really suffering with them, and he said to her have you ever considered that they could be? You know symptoms from a past life.

Speaker 1:
16:55

Yep, that tracks right.

Speaker 2:
16:58

Right and it's kind of it's so ridiculous until you think that was actually the level of care this woman received. She was then sent away and told to research regression therapists. Now, no matter what your beliefs are in terms of past lives and all that kind of thing, that is not appropriate care for a very real disease that she needed help with. It's yeah, it. It's just we are getting to a point where enough's enough, it's just. What do we do with that? What do we do with that level of emotion, that level of frustration and anger and motivation, and the best way that I know to handle it is to try and channel it. I'm not saying that's for everybody. Some people just want to go to a rage room and smash things up. I have days like that too, yeah, but for me, if I can make a difference to like the lives of my nieces growing up, so that they don't have to go through that.

Speaker 2:
17:58

If I could do that, or at least be part of a society that tried to do that, then I think I would have done something good from my journey, yeah.

Speaker 1:
18:07

What is your project? Can you explain that a little bit as far as the name and where people can get involved in this project if they want to?

Speaker 2:
18:17

so it's called. They said what's project and that's the handle on instagram and tiktok although I haven't actually done anything with tiktok yet um, and then you can also access it on my website, which is genmore forward slash dot. Co dot. Uk forward slash.

Speaker 2:
18:30

They said what project and it's at the moment we're in collation stage, so we are gathering all of these experiences of women's health dismissal, gaslighting, just anything across all of women's health, so menopause, menstruation, anything, and uh yeah. So then when we've done that, we will collate it all, make it into a report. We're also working with psychologists to create resources for people that are going through medical gaslighting because, like we said earlier, it's just trauma upon trauma upon trauma upon trauma and everybody has their breaking point. So it was really important to us that we um, we created some resources as well for people that are going through this, and then we will also create recommendations of how we can hopefully start to chip away at that in the future.

Speaker 2:
19:12

But yeah, the name actually came from my friend because when I told her, I sent her a voice note about the comment I told you a minute ago about the environmental impact and she literally sent one back to me being like hey, sen what. And then, like she was so like angry about it and I was like that's a really cool name, yeah. So yeah, she's a graphic designer, so she designed it all for me and stuff. Um. So yeah, it came from my friend's outrage.

Speaker 1:
19:37

I don't know anyone who has done advocacy that hasn't said they. They've said, they said what like? That's so brilliant, it's so brilliant actually this is brilliant it is great.

Speaker 1:
19:50

Yes, it's so wonderful. I that's such a great idea. It, I mean, I hear it all the time. I think much like anyone who is really ingrained and embedded within the endometriosis community. We hear some of the most asinine things. Sometimes I sit back and say how do these people think up those things? To say Like that is not a normal thing to even consider for most people. Why did that come out of your mouth? What made you think that? You know? It just is appalling.

Speaker 2:
20:22

Well, a friend of mine. She submitted one of her experiences and she suffers horrendously with bowel and bladder endometriosis, along with others.

Speaker 2:
20:33

And surgeon said to her if you were a horse, you'd have been put down by now they said what yeah, again, kind of one of those things of on what planet did you think that was an appropriate thing to say to somebody? Yeah, especially somebody who have gone through so much and who was facing a second um stoma. She's had to have two stomas, so she's come through so much and you think that's an appropriate thing to say to her no, it's not.

Speaker 1:
21:13

in case you were wondering. It is not okay to say to someone like that yeah, oh my gosh.

Speaker 1:
21:19

Oh, I can't even. I mean, I want to come back a little ways, because we were talking about the time it takes to get into proper care or even any care for endometriosis, and I think that when we get answers like this and then we have to go sit on another waiting list and we have to find someone else, that's going to take us serious and we're trying to navigate the next part of our journey, and then again it's another year to two years out potentially. What are you seeing people do in desperation Because I feel like this is a big component of endometriosis and how we struggle so bad because we are desperate. We are desperate for some relief, we are desperate for answers, we are desperate for just being able to function and have a quality, some quality of life for some people. What have you experienced over there as far as the desperation piece goes? What are people doing Because they have to become so desperate at this point?

Speaker 2:
22:19

Yeah, so the average diagnosis time over here has just gone up. So, depending on which nation of the UK you're in, it's either just under nine years or just under 10 years, and that's the average. I did a poll on my Instagram and actually it's looking much, much higher than that. I think those are vastly under underestimated. And then, like you say, that's only one half of the picture, because okay, you've got your diagnosis, but now you've got to wait again for treatment, and is that treatment good? So you know, we there's a lot of media and government focus on this diagnosis time, but and reducing that, which is hugely needed, but we also need to reduce the other piece too, and we can't forget about that. End of it. But in terms of what people are turning to, there's a big thing online.

Speaker 2:
23:07

I love online advocacy and whenever people say to me, oh, what about the misinformation online? I say, well, hold up a minute. You have to ask why are people going online in the first place? And that's because they're getting misinformation from trusted sources. Whether that's a charity, whether that's a government body, whether that's the NHS or the GP, you know they're getting misinformation from these sources. So they're turning to social media first. So again, you've got to take a step back and see it from a little bit higher above. But once you get onto social media, there is a lot of misinformation and there's a lot of people unfortunately targeting those with chronic illness and obviously the algorithm sends me a lot of endometriosis related stuff. So right when I say and I'm not just talking about endometriosis, but I will just talk about endometriosis if that makes sense and there is a lot of people trying to sell supplements or programs or all diets, all sorts of things aiming at targeting people with endometriosis or PCOS or adeno or fibroids, no matter what it is. I saw one and she was selling a program and it was thousands of pounds, um, and it was about healing your womb and that would help your endometriosis, because our womb energy was hurt by past traumas or you know, I couldn't even make sense of it. I'm quite an educated girl. But basically, if you did this magical thing with your womb then you would heal your endometriosis. And I actually messaged her and I said would it work for me, because I haven't got one, I've just got a void, does it work? But she didn't reply. Add, I know. So there is this danger of people I mean I assume they genuinely believe these things, they're not just that much of a snake oil salesman but there is this risk of people that are willing to take advantage of people who are desperate and in desperate need of relief. And I've been there where I have been so desperate for relief that I will try anything. And some things are great for symptomatic relief, some things can be brilliant, but they're not going to treat the disease.

Speaker 2:
25:18

And that's always the little caveat that seems to be missing from all of this stuff. You know it's not actually going to stop the disease growing. It's not going to stop it affecting your organs. For example, and the one I see a lot at the minute in the UK is diet related. There is no endometriosis diet. There is not one that is going to work for everybody. It is an exceptionally individual disease and our triggers will all be. You know there might be some overlaps and some common ones, but generally they're all going to be unique to us and our symptoms and where our disease is growing and what type of endometriosis it is and what you know all these things I mean.

Speaker 2:
25:57

Yeah, there are some guidelines that a lower inflammatory diet is can be helpful to lower the inflammation in the body, but, again, it's not going to reduce your disease right, and that always seems to be the piece that's missing. And I think, particularly with social media, it can get dangerous quite quickly and we can get into a state of frenzy almost like, oh, this is going to help, this is going to be amazing, and we, especially with food, it can create a bit of disordered eating in an already very vulnerable group of people. Yeah, so yeah, it's. It's something to be really aware of. I think if you are spending a lot of time online, especially in chronic illness communities, is fact checking, source checking, making sure you know that if something is giving you symptom relief, that's fantastic. Keep doing it if it's not harming you or anyone else, but it isn't treating the disease and there always needs to be that element of getting to the root of the disease. Yeah, but yeah, we're just. We're all so desperate for relief, haven't we? We've all been there with this disease that we will try anything. And and then you see something pop up on your algorithm that's promising you balance in your body and all these buzzwords, and it's yeah.

Speaker 2:
27:13

It took me a while. Quite a few times I was like to my husband. I was like, oh babe, do you think shall I try this, or should I do that? Or, and he is like, why, why would you right? Because it might work. And he's like, yeah, but look how much it costs, right? So, yeah, it's. It is difficult. I think. Yeah, diet and supplements seem to be the real ones doing the rounds at the minute over here. Everybody seems to be bringing out a supplement that's targeted at endometriosis, that's meant to deal with various aspects, and if they're good for symptom management, then cool. You know they work for that. But there was one that said it reduces lesion size and I was thinking that is a bold claim. No, kidding, I mean, if it's going to be see that I want to see the research on that one right.

Speaker 2:
28:02

It's a bit nefarious, and I mean I'm looking on my desk because I actually ordered some, not because I was going to try them, but because I wanted to see what it was like. There's a lot of unsubstantiated claims going on right now, unfortunately, and they always seem to be attached to a product.

Speaker 1:
28:19

My thing about this is and this is maybe just some of my advice to those who are looking for, maybe, symptomatic relief, and I don't know how like your physiotherapy is there and how long you have to wait or how accessible it is to you over there that's always to me that should go hand in hand with endometriosis care.

Speaker 1:
28:41

Every single time I wish Right, but that's even hard to come by, even here in the States, I think I.

Speaker 1:
28:47

I mean, I know in our little community here there's pelvic floor physical therapists, but how well do they know endometriosis Like I have one in the area that I'm in that I know of, not to say there aren't more. So it is challenging, right, but then when you're talking nutrition, when you're talking supplementation, when you're talking all these things that either you're going to put in your body or you're going to spend money on, it should be an individualized plan for you, because you are an individual person dealing with individual needs Somebody and you and here's the other part of that too that I think maybe we should consider is the fact that most of us have other co-challenges or, as some say, comorbidities that could affect our diet. So it is not a one size fits all approach and unless they can prove to me the research that says this diet is going to eliminate lesions or shrink them, then really it's kind of a red flag. They cannot back that up with actual, good, validated research.

Speaker 2:
29:52

Yeah, definitely, and I think, with the diet thing as well, if it's coming from somebody who has no background in this stuff, then do your research before going on it. Some of these diets can be really quite extreme and they aren't designed to be done long term, especially, you know, anything kind of an elimination based diet. They're not designed to be done long term. They're designed to be done under the guidance of somebody who actually knows what they're talking about. Whereas you know social media, I feel like sometimes followers, the number of followers, gives this false air of credibility sometimes and it just can be be dangerous. It can be very dangerous and it can create this sense of, oh, I can't eat that or I must eat this and it. It's just another form of disordered eating in. In essence, yes, um, it's, yeah, it can get out of hand pretty quickly, for sure yeah, and I think too, like we shouldn't be living in fear.

Speaker 1:
30:47

No, right, and if we can't follow a diet or a plan, we shouldn't live in fear because we can't do it, that our symptoms are going to come back or that the endometriosis is going to get worse.

Speaker 2:
31:00

Endometriosis is never your fault, never. There is nothing that you have done or not done, or eaten or not eaten, or taken or not taken, or said or not said or whatever it is endometriosis or endometriosis recurrence never your fault, like end up, and I feel like sometimes that's the line, this very fine line, but a lot of these things are treading is that they're edging on saying if you don't do this, then you know, are you taking it seriously? I've actually seen one pretty much say that um, yeah, it's just no, no, no, endometriosis is never your fault, never your fault and it also these supplements.

Speaker 1:
31:45

If you take supplements, I know for myself I have adverse effects of supplements like reactions to supplements is very real, specifically in the endometriosis community, we tend to be pretty sensitive to certain foods and certain supplements, and although some people are like, well, they're meant for good, that doesn't necessarily mean they're good for you, and so you have to keep that in mind, and that's why it does need to be individualized and personalized. I don't that, just as someone who's very sensitive to those things, I'm very aware of them, and so I think it's important to keep that in mind. Although it's a supplement or an herb, it can still have an adverse effect for your health.

Speaker 2:
32:26

And again, that's not your fault if it does. No, no, never your fault, never, never, never. But you're right. Right, I think any blanket approach treatment to endometriosis is a little bit destined to fail, to be honest, because it is so individualized, um, and that includes a medical approach. I don't think you can say that what works for one person will work for another person, and you know, you can't say that because they might react very, very differently.

Speaker 2:
32:52

They might have different goals. They might there. Could you know a thousand and one reasons why? But yeah, it needs to be an individual approach.

Speaker 2:
32:59

And going back to what you said about physio, yes, pelvic floor physios, I wish they were more readily available here. They just aren't. You can sometimes ask and they're like, oh okay, you want that and then they'll refer you, but they're always kind of surprised, um, it's quite rare that it will be included as part of your kind of recovery, despite the fact that those vsge endometriosis centers that I mentioned, they're meant to be multidisciplinary, they're meant to be this great, in theory, multidisciplinary team, um, but very, very, very few of them have any kind of physio attached to them, despite all we know about how much that helps, not just endo, but I don't know any kind of issues in the pelvic area. But yeah, I wish they were more readily available. They're mostly private over here, especially if there's any kind of real focus on any condition. They do tend to be private and geographically located in london or big, bigger cities. I think it's becoming slightly more known.

Speaker 2:
34:01

The benefit of it uh, but it's again it doesn't seem to be coming from the doctors telling us or the medical group you know institutions telling us. It seems to be what we're telling each other, right, um, and that's where the information is coming from. So it would be nicer if they acknowledged that and pushed that as part of endometriosis recovery, because it does make a huge difference, massive difference.

Speaker 1:
34:24

It's definitely changed my quality of life and that's even like post-operatively I've had good excision and, you know, I don't have the endometriosis pain. I've had a hysterectomy but my body went through years of growing something that shouldn't have been in there and forming around what shouldn't have been in there, and so everything's kind of been rearranged rearranged. And that's why I think that it's so important that we see providers that can help us kind of navigate, rearranging our body in a way, you know, and pain for so long, right, so when you're in pain, your muscles clench and then they're designed to release when your body is no longer in pain.

Speaker 2:
35:10

But if you're in chronic pain for example, 22 years in my case like, your muscles are never going to release, they're just going to be permanently clenched and that has huge impacts in your pelvic area and the muscles in that area, your pelvic floor, your hips, you know all of these things are hugely affected by it and yeah, like you say, then they have the thing growing in there as well and rearranging around it. That's hugely affected and that doesn't stop after surgery. Like you say, it's the next step and I think um Ray, great advocate, yeah as well, she, she always says you know, surgery is step one, excision surgery is step one, and I think that's where physio comes in then as well. It's like doing what we can do after that surgery to to really continue it going.

Speaker 1:
35:56

And I actually would counter that by saying physiotherapy is step one to help recover from step two, excision. And the only reason I say that is that if you, by and large, look at patients who have started pelvic floor PT prior to surgery, their recovery tends to be a lot better and you're already in with a pelvic floor PT who can help with adhesion, like breaking up adhesions post-surgery, and so I would even counter that a little bit. I mean, I think for, um, maybe for like treatment of the actual endometriosis, I would say surgery, excision is step one, but I would say overall treatment, physio might be step one in my opinion.

Speaker 2:
36:44

Oh, I like that yeah.

Speaker 1:
36:47

Because that's a support tool.

Speaker 2:
36:49

Yeah, makes a lot of sense. For sure, I had the opposite, and so this is why I'm agreeing with you so much. Actually is because I was. They called it a pelvic physio, but it was definitely a physio who was just working on my pelvis, if that makes sense. It wasn't a specialist, um. And I said, oh, I'm due to have surgery pretty soon. It was the second surgery, so quite a major surgery and she basically discharged me from the service and said well, there's no point us doing anything, then come back when you've had your surgery. And so now you're saying that I'm like, yes, actually I agree with that like yeah, that should not have been what happened at all, should have been the other way completely. I mean, she should have been a specialist to start, but I wasn't sent to a specialist, unfortunately. Yeah, um, yeah, physio is definitely a big tick in my book.

Speaker 1:
37:38

Yeah, and I do think that there's room and space for getting mental health therapies. I think we all need that and I think it will help us even downregulate our bodies a little bit better from holding on to the tension and the pain and everything else that kind of comes with endometriosis. It's a whole body disease and that includes your mental state, like it takes a toll on us so much and it's hard to break out of some of those traumas that we've experienced or even processing what's been said to us before and when we internalize a lot of that said to us before and when we internalize a lot of that, our overall health is not as great either, and so I mean, I think there's room and space for it, and I think we need to acknowledge that a little bit more.

Speaker 2:
38:25

I had therapy last year and it was brilliant, but it was my choice to go, so I didn't. It wasn't because the surgeon said I think you need some therapy. It was my choice.

Speaker 2:
38:36

I couldn't see my life beyond the pain that I was in at that point and it got to the point where my husband said, like you know, I love you, but I don't know how to help you any like beyond this. He was like maybe we could look into that. So we did and, um, you can self-refer here. So I self-referred and it was so, so helpful. I mean it what.

Speaker 2:
38:54

I wasn't necessarily there because of endometriosis. I was there because of the effect it had had on my life. I'd given up my career, that I'd lost all my confidence, that my body had changed so much that I felt like I was missing out and that all my friends were overtaking me like it was all these things and they weren't because of. You know, the endometriosis wasn't what we discussed, it was all of these different effects and, yeah, it was a huge, huge help.

Speaker 2:
39:20

And I say as well that the symptoms of endometriosis aren't all physical and that a lot of them are emotional and mental, and I think it's hugely important that we recognize that and are able to access help and support for that. But what's not good is when we're told that those treatments, those therapies, will solve our physical issues. They won't. Stress can be a huge trigger and a huge inflammatory trigger which can then trigger all sorts of other things as well, but it's not going to get rid of the disease right. And I think when it's it's pushed as that which it can be a lot here in the UK, I know it that's when it's not cool, it's it's not meant to do that either, you know, and I think that's when it almost gives the mental health therapy and mental health service almost like a bit of a bad crap, because it's like, oh well, I tried that they didn't work and it's like, yeah, but you weren't actually given the right tools to help with what you needed.

Speaker 1:
40:19

If that makes sense, yeah, absolutely yeah you're not crazy, but it this is the way that I've kind of explained this to people, because I've experienced it myself it helps you identify what's actually hurting and what's a what's a trauma response in your body. So, because I think pain is it's your brain's way of and what's a trauma response in your body? So because I think pain is it's your brain's way of saying something's wrong. So they're all connected. So if you are upregulated within your system, you're at a heightened state. Everything's going to hurt, it's going to radiate.

Speaker 1:
40:49

But when you walk through the process of what experience did this have on you mentally? Where were you able to find relief when this happened? Then it allows your body to release a little bit of that fight or flight and identify what is actually hurting, not if you are hurting, but what is actually hurting. And I think that might be the biggest help for some of us as patients who live with pain all the time, because pain is a memory too. We remember the pain. Like you do something, say, you're riding your bike and you hit your knee on something. Anytime you go to ride your bike, certain past, certain areas, it's going to automatically trigger your brain to feel pain, because it's a memory. So it's interesting how a lot of this does correlate. But again, it doesn't mean that you're not having pain and that it's not severe. It's how do we isolate what is actually hurting?

Speaker 2:
41:49

And for me, I'm a massive overthinker, especially when I'm stressed, and so for me, when I was in having a really bad flare before my hysterectomy, I'd be like is that my endometriosis pain or is that my adenomyosis pain? And I would actually try and isolate it right down to like areas of my body, organs, even like a cellular level. My brain was trying to visualize this pain and actually what I learned was that doesn't matter in that moment. What matters in that moment is what type of pain is it and what do you need to do to soothe that pain or get yourself comfortable or as most comfortable as you can be in that moment, because all I'm doing by doing what I was doing, is just creating this cycle of stress pain, stress, pain, stress, pain, stress, pain, stress and it was just like spiraling.

Speaker 2:
42:34

And so that was like a really key thing for me. It was learning almost to take a step back and be like, okay, I'm in pain, it's that type of pain. I know that that helps with that type of pain. Right, and it wasn't until therapy that I was able to kind of have that clarity of thought over it. Before that it was just like I'm in pain and my husband would be like, okay, what kind of pain, I don't know, it's just painful. And it was, you know, between us. We were in a cycle and just kind of like, what do I do? What do I do? But yeah, it was learning to kind of like I say, take a step back and and think, okay, but what can I do for myself in that moment?

Speaker 2:
43:13

and that's not always easy to do. I've actually taught my husband the same thing. So I'm like, if it's this pain, this helps. So if I can't verbalize it because the flare is particularly bad or whatever, then he's like, okay, I know I need to go and get this and help her in this way, which has been such a support. But yeah, it's definitely not to be underestimated, the power of therapy. I just wish that it wasn't used so dismissively or as a tool to dismiss, which it often is here and I'm sure is the case over there too. Yep.

Speaker 1:
43:41

I would agree with that, I think, if it said to you there's nothing else I can do for you. Your pain is in your head.

Speaker 1:
43:48

That is dismissive, that is the number one red flag that you need to see someone else because it is not in your head all the time and that is dismissive. If someone were to say to you you know I'm not dismissing, that you have pain, but maybe let's try to find a way that we can help identify when this pain is happening and how it's happening, and that might help our treatment plan moving forward.

Speaker 2:
44:15

Yeah, totally different If it's multidisciplinary is that even a word? As part of a multidisciplinary team, then yeah, fantastic. But what it can't be is that it closes the door to your treatment pathway because they're just shunting you off into the kind of emotional, mental side of it. It has to be like this unified response.

Speaker 2:
44:36

Um, because our medicine and our medical system has become so siloed, the more we've learned over the last however many hundreds, thousands of years, right, we, it's become impossible for one person to be the doctor.

Speaker 2:
44:49

Right, it used to be that one person was the physician for everything, because they didn't know as much about the body as we did. And as we've learned so much more, we've had to split them off into all these different specialists because we know so much more and that means we can treat people so much better. But what's happened is that we've created these silos that mean that a multidisciplinary disease such as endometriosis had nowhere really to sit, so we've had to put it into the kind of the closest fit, and it's kind of. It's still then shut off from all these other specialisms and knowledge and treatment approaches and it's kind of how do we approach that? Because one person can't know everything about everything. So the closest way that we can do that is a multidisciplinary team and a multidisciplinary center, but it's then making sure that those are up to scratch and that the bar is set high enough and held high enough.

Speaker 1:
45:44

So yeah, a long way to go, unfortunately, but I do think there are moves in the right direction we just need to keep the momentum you know, where I see the most impact is within the advocacy and in the support arena, because that is honestly where you're going to get a lot more well-rounded information, because you're hearing it from people who have experienced it firsthand.

Speaker 1:
46:07

And that's where I think we underestimate the value of community and community support, because more than likely, you're not the only one that's experienced this specific thing, maybe in a different manner. But if you reach out to people within the community and advocates, I can almost guarantee that you're going to have a better outcome of the next direction, because a lot of us have been in that position. So that's why I love what you're doing. I love that you are present and you are visible and you are helping so many people navigate their journey in a positive way, but in a realistic way. It's not the toxic positivity, it's the honest, real way. But there's hope within the community and here's how we can improve endometriosis care.

Speaker 2:
46:57

Yeah, yeah, thank you, that means so much.

Speaker 1:
47:01

Yeah, I mean, it's patient driven at this point, and and patients are starting to demand better care, and I think we should. Oh, yeah, for sure.

Speaker 2:
47:11

And so yeah, exactly, and most of these providers have never experienced what we're experiencing, that's true, I always see those ones where they stimulate those little things that's meant to stimulate period cramps. Have you seen those?

Speaker 1:
47:26

videos.

Speaker 2:
47:28

And I'm like how do I get one of those Right so I can whack them on all the like future doctors and get them to feel a fraction of what it?

Speaker 1:
47:37

is A very strong TENS machine.

Speaker 2:
47:40

Is that all it is? Yes, oh, oh, future doctors, watch out, watch out, jen's coming for you. I'll just be outside in Cambridge just like flapping TENS machines.

Speaker 1:
47:56

It's for research purposes, educational research. I recently enjoyment yeah, exactly, I recently saw where they did this. It was like a I think it was eight or ten year old boy did this and he wanted to because his mom had endometriosis. He's like well I want to do, and he wanted to because his mom had endometriosis. He's like well, I want to do it.

Speaker 2:
48:21

He got to a 10.

Speaker 1:
48:21

I was shocked, okay, and I was like that's torture. He goes I don't like this. He goes this is what you go through every month. And she's like, yeah, can we turn it off now? And he didn't cry, but he was like that was too much. He's like you can't work like that. And it was interesting to see it from a young child's perspective and a boy who clearly loved his mother. But I've also seen it with like law enforcement, where they put it on.

Speaker 2:
48:46

They got to like a four yeah, yeah, I think I saw one and it was like an army couple of army guys tried it on and you could see they were trying so hard to be like I can do this, I can do this, I can do this and like outdo each other, but in the end they were just like I think they got to like six, I think, um, but yeah it was. It was very, very amusing, all that poor little boy, though I know special ops training Apparently that's all you need.

Speaker 2:
49:14

That's all you need.

Speaker 1:
49:16

That's great, oh, my goodness. Well, jen, thank you so much for joining me today and just sharing your story and your advocacy and your heart behind endometriosis and allowing your experience to help guide you through helping others, and that's so impactful and it will be impactful for years to come. So thank you for sharing your heart and your journey and so much of your time. Thank you, I was happy to have you and you, of course, are welcome to come back anytime and update us on everything.

Speaker 2:
49:44

Thank you, I'd love to yes.

Speaker 1:
49:48

Well, until next time, everyone continue advocating for you and for those that you love.