Endometriosis doesn’t just affect women

On this episode of the GenderGP Podcast, Marianne and Helen are joined by Jodie and Krystle from Endometriosis South Coast. They talk about why endometriosis shouldn’t be treated as just ‘a women’s disease’, and how we can improve access to healthcare for trans people.

If you have been affected by any of the topics discussed in our podcast, and would like to get in touch, please contact us via the Help Centre. You can also contact us on social media where you will find us at @GenderGP on Twitter, Facebook and Instagram.

We are always happy to accept ideas for future shows, so if there is something in particular you would like us to discuss, or a specific guest you would love to hear from, let us know. Your feedback is really important to us. If you could take a minute or two to leave us a review and rating for the podcast on your favourite podcast app, it will help others to discover us.

 
Links:
You can find out more about Endometriosis South Coast on their website.

Freddy McConnell also joined us on the podcast to talk about accessing healthcare as a trans man.
 

Get access to the care you need today

 
The GenderGP Podcast
Endometriosis doesn't just affect women
 
Hello, this is Dr. Helen. Webberley welcome to our Gender GP podcast, where we will be discussing some of the issues affecting the trans and non-binary community in the world today, together with my co-host Marianne Oakes, a trans woman, herself and our head of therapies.
 

Helen:

Hi everyone. Hi Marianne. Uh, we are here today with two guests, um, and I'm going to let them introduce themselves. So hello guests. Tell us all who, who you are. Why are you here? What's your interest? Why are you on a, a Gender GP podcast? What do you do? What would you like to know from us? And what, what would we like to know from you?

Jodi:

Sure me to take that one, Crystal, go ahead. So I am Jodi. I am from endometriosis south coast. I founded the charity in November, 2019, and we support all people with endometriosis and adenomyosis, which endo'suz evil twin sister. And, and we want everybody to know who we are, what we do and how inclusive we are. We're doing a lot of research at the moment, mainly me doing a PhD and I'm looking at endometriosis care in different sample groups of people, gender being one of them. And it's really important. Get as many people as possible to like come and get involved in this survey because we want to change the care that people with endo get, cause it's not good enough for the average person that has endo. And it's definitely, definitely not good enough for trans people with endo. And this is where Crystal comes in because she's our trans advisor.

Crystal:

Hi. Yes, I'm Crystal. Jodi asked me to come on board with the charity, just to look over everything that the charity were doing, all the resources we put out all the materials just to make sure it's really inclusive. The trans men that may be suffering with endometriosis and non-binary people with endo. So I've got a passion for this because my daughter is transgender. So it's really important that we do everything we possibly can to bring every voice, um, into the endo discussion and get people involved in the research and the support groups and yeah, make sure every voice is heard basically.

Helen:

Brilliant. Well, thank you. And, and welcome to both of you. It sounds really interesting work. I love it. When a charity or an organization who's really passionate about something is also really passionate about something else. And then they stick together and say, let's make this doubly passionate and extend the reach. So I think it's really great work that you're doing and, uh, and welcome to to our podcast today. So there will be people out there who don't know what endometriosis is, adenomyosis, endo. And um, I'm gonna just call them both endo now as you two do.

On this episode of the GenderGP Podcast, Marianne and Helen are joined by Jodie and Krystle from Endometriosis South Coast. They talk about why endometriosis shouldn’t be treated as just ‘a women’s disease’, and how we can improve access to healthcare for trans people.

If you have been affected by any of the topics discussed in our podcast, and would like to get in touch, please contact us via the Help Centre. You can also contact us on social media where you will find us at @GenderGP on Twitter, Facebook and Instagram.

We are always happy to accept ideas for future shows, so if there is something in particular you would like us to discuss, or a specific guest you would love to hear from, let us know. Your feedback is really important to us. If you could take a minute or two to leave us a review and rating for the podcast on your favourite podcast app, it will help others to discover us.

 

Links:

You can find out more about Endometriosis South Coast on their website.

Freddy McConnell also joined us on the podcast to talk about accessing healthcare as a trans man.

 

Get access to the care you need today

 

The GenderGP Podcast
Endometriosis doesn’t just affect women

 

Hello, this is Dr. Helen. Webberley welcome to our Gender GP podcast, where we will be discussing some of the issues affecting the trans and non-binary community in the world today, together with my co-host Marianne Oakes, a trans woman, herself and our head of therapies.

 

Helen:

Hi everyone. Hi Marianne. Uh, we are here today with two guests, um, and I’m going to let them introduce themselves. So hello guests. Tell us all who, who you are. Why are you here? What’s your interest? Why are you on a, a Gender GP podcast? What do you do? What would you like to know from us? And what, what would we like to know from you?

Jodi:

Sure me to take that one, Crystal, go ahead. So I am Jodi. I am from endometriosis south coast. I founded the charity in November, 2019, and we support all people with endometriosis and adenomyosis, which endo’suz evil twin sister. And, and we want everybody to know who we are, what we do and how inclusive we are. We’re doing a lot of research at the moment, mainly me doing a PhD and I’m looking at endometriosis care in different sample groups of people, gender being one of them. And it’s really important. Get as many people as possible to like come and get involved in this survey because we want to change the care that people with endo get, cause it’s not good enough for the average person that has endo. And it’s definitely, definitely not good enough for trans people with endo. And this is where Crystal comes in because she’s our trans advisor.

Crystal:

Hi. Yes, I’m Crystal. Jodi asked me to come on board with the charity, just to look over everything that the charity were doing, all the resources we put out all the materials just to make sure it’s really inclusive. The trans men that may be suffering with endometriosis and non-binary people with endo. So I’ve got a passion for this because my daughter is transgender. So it’s really important that we do everything we possibly can to bring every voice, um, into the endo discussion and get people involved in the research and the support groups and yeah, make sure every voice is heard basically.

Helen:

Brilliant. Well, thank you. And, and welcome to both of you. It sounds really interesting work. I love it. When a charity or an organization who’s really passionate about something is also really passionate about something else. And then they stick together and say, let’s make this doubly passionate and extend the reach. So I think it’s really great work that you’re doing and, uh, and welcome to to our podcast today. So there will be people out there who don’t know what endometriosis is, adenomyosis, endo. And um, I’m gonna just call them both endo now as you two do. So please could one of you just explain in simple terms what it is, who it affects and also why does gender come into it?

Jodi:

Yeah. So endo is a condition where cells that are similar to those that line, the womb grow outside of the womb. It could grow anywhere. It’s been found on every single organ of the human body. Now up until a couple of months ago, it had been found everywhere apart from the spleen, but now it’s been found on the spleen. So it’s official. It is everywhere. It can grow in the lining of your nose. So you get like monthly nosebleeds, or it’s quite common to find it in the lungs now. So that can cause like monthly coughing up of blood. And it’s just generally not a fantastic condition to have. The reason gender comes into it is because it’s up until like the last couple of years it’s been seen as a, a woman’s condition because it’s so often been seen as a gynecological con- disease condition that just affects the womb and estrogen and ovaries. We’re finding out it’s not, it is a whole body disease. It has been found in cis men. It is rare, but I think if more research is done into it in cis men, we’ll probably find out that there’s a hell of a lot more people out there with the condition. That’s why it’s always been a very gendered thing and people see it as just a female condition, which it’s not

Helen:

Brilliant. And, uh, a quick synopsis on adenomyosis seeing as we talked about that one as well. Yeah.

Jodi:

Adenomyosis is where endometriosis grows inside the muscle of the uterus. So it’s a little bit like fibroids, but not Fibroids.

Helen:

Thank you so much, Marianne. I hope that helped you. I’m gonna to test you on that later. <laugh>

Marianne:

I’m not gonna lie it. That was all new to me. So thank you for explaining. Just one question that came into my mind. If you don’t mind, how common is it or, or uncommon

Jodi:

the official statistic is that it affects 1 in 10 women. We don’t like to say that we like to say it affects one in 10 people that were born of female sex.

Helen:

So why not 1 in 10 people with a uterus or does it, does it also affect people who don’t have a uterus or a womb?

Jodi:

Uh, it does. It does affect people that don’t have a uterus or a womb. I have had a hysterectomy now and yeah, I still suffer with endometriosis horrifically. And we don’t like to say menstruates either because some people that don’t menstruate suffer with endo, it’s a really tough one because it’s been so gendered for so long, finding a sort of statement that we can use is quite a difficult one.

Crystal:

We’ve definitely been trying to find our feet around language and make sure that, you know, our LA our language just cover everyone with endo. And if we get it wrong, then we try and do better.

Jodi:

We always take, if someone says like, uh, you should be doing that, we will always take that on board. And we are happy to adapt.

Helen:

It’s hard, isn’t it? I find it very hard. We talk about this so often don’t we marry Anne. We are always so worried about getting the language wrong and sometimes it’s a barrier and the shouldn’t be there. Just speak freely. We don’t mean to offend. We don’t mean to hurt anybody’s feelings. That’s no one’s intention, but getting the language right is tricky. Isn’t it really, really?

Jodi:

And do you know what the trans community have been absolutely amazing with us? Haven’t they Crystal and absolutely they’ve been totally understanding and have completely worked with us and we have got it wrong. They have told us we’ve got it wrong

Crystal:

And really opened our eyes to a lot of issues that we hadn’t considered before. You know, you know, it was very common in the support group to hear from cis women with endo and their perspective on care, but to listen to non-binary and, and trans men with endo. Yeah. And really listen to what their experience is of navigating healthcare with what’s considered a gendered disease. Um, it’s been really eyeopening and it, I think it’s definitely propelled. Jody’s work in her PhD in Her research.

Helen:

Now you said that I’m gonna have to ask you, and what kind of experiences have people told you about Crystal? We know that it’s difficult to navigate healthcare as a trans person. And then when you’ve got something that is so specifically gynecological in the old fashioned sense, then that must be doubly hard.

Crystal:

We actually arranged a webinar around this whole experience. And unfortunately, a lot of people, um, a lot of endo sufferers in the UK didn’t wanna speak publicly about their experience because of how hostile the environment is at the moment. But we had a few people from the states speak to us and private messages from people in the UK. One of the biggest things that came out of it is not understanding or not, not being able to find information in regard to how endo treatments, which are typically hormone based estrogen and progesterone, how they would interfere with medical transition. So for someone who’s a trans man, who’s wanting to use testosterone, you know, to helping their transition. They in to be told they need their body pump full of female hormones as a treatment. You know, they had no idea how this was interact, how, how to get around this. And we still haven’t been able to find answers, um, to those questions. They’re so lit- little out there for us to be able to hand back to those people. So we are still seeking those answers at the moment.

Marianne:

I’m assuming listening to that Crystal, that research sounds like it’s very binary. Absolutely. Yeah. And this is the thing that trans people face, you know, even when we talk about the medication that we take, it was never developed for the purpose that we use it, therefore everything tends to be anecdotal. And it feels just listening to you, both talking there that whatever’s going on for the patient where endo is concerned is probably a little bit experimental.

Jodi:

Yeah. Yeah. It totally, there is so little research out there with endo and trans people. Obviously it’s one of the things that I draw the <laugh> the databases daily looking for information like towards the PhD and stuff like that. And there is just nothing me and Crystal have spoke about it before that actually looking at how trans bodies react to these hormones as they’re transitioning would actually be a really sensible thing to do because it could actually open up new treatment pathways for endo, because endo is such a estrogen dominant is surely looking at things that are taking estrogen out of the picture would be quite sensible.

Helen:

It’s tricky though, isn’t it? Because you’ve got people who for, for whatever reason that we must respect, didn’t want to talk on your webinar or, or share their personal experiences or don’t want to verbalize it can, can, might send you a secret message. And we’ve gotta ask ourselves in healthcare and in support groups. Why, why is that happening? Because how can we do research? How can we get better? How can we work out? What makes people better? What makes people worse? What makes people the same? If we can’t even hear the stories and it’s not their fault that they’re not able to bring forward their stories, what are the barriers that are in place that make people too scared to, um, to share their stories? Um, and so it’s just a terrible, a terrible situation that we’re in at the moment. And, um, it’s gotta start with breaking down those barriers and allowing people to the safe space to talk isn’t there. Really?

Jodi:

Yeah, definitely. That is a hundred percent. What we aim to do is provide us safe space for people in the support group. We have had a few issues with women that didn’t want to accept that there are trans people out there that have endometriosis and we have kicked them out of the group, quite frankly, because there are so many safe spaces for women with endometriosis. And that is not what we do. We are a space for everybody with endo, and we need to give people that safe space. If people did want to get involved in the survey that, and the work that I’m doing, it is completely, totally anonymous. No one can identify you by it. I don’t even know who you are. It’s totally, totally anonymous. And it’s just that fear. We need to break down that fear and let people be there safely on that

Helen:

Note. Tell us about, about your PhD. How can people who are listening, help inform your work because it’s through research such as PhDs, that we are gonna make some progress. So what are you studying? Um, and how far have you gotten what’s your hopeful end result?

Jodi:

So I’m in my first year of my PhD. It is one that I’ve come up with myself. So it’s, it is not, I’ve not joined one. It’s all totally me. And it’s looking at how related quality of life in different sample groups of people with endometriosis. So we are looking at the area that you live in the UK. We are looking at whether you are seen at a endo specific hospital or compared to a regular gynecologist. We are looking at gender obviously we already know the answers to the questions that we’re asking. To be honest, we already know that there’s gonna be a complete change in how related quality of life in all of these different subgroups, but we need it in black and white so that we can then lobby to change nice guidelines and government guidelines. So that treatment can be changed.

Helen:

Brilliant. And how are you going about your research?

Jodi:

So it is a online anonymous survey and it does also give you a link in there to my university email address, cause we are following some of them up if you want to with, um, interviews so that I can really like dig deep into what, what is affecting different people’s healthcare.

Marianne:

When, when you said about the numbers Helen, I was thinking our patient group, it must be prevalent somewhere within our patient group. And from what you’ve said, getting people to talk about this is really, really difficult. So the question of one that was going through my mind is what happens if it goes untreated, how does it actually affect people’s lives

Jodi:

Affects every single part of a person’s life. It affects the mental health of people because obviously there’s a pain sickness cycle. So if you are in pain, you tend to be depressed and then the depression will affect the pain. And then the pain again affects the depression. So there’s the mental health aspect of it. There is the daily pain. Some people are lucky. They only get painful periods. Some people are unlucky, they get pain all the time. There’s pelvic pain, there’s sciatic pain, there’s leg pain that goes along with it, which is a weird one pain. While you are urinating pain. When you are opening your bowels missed periods, heavy periods, it literally affects everything. And generally you tend to find when you’re talking to a group of people, it’s not until one person says, oh, I’ve got endometriosis that then you get like other people going, oh yeah, I’ve got that. And you’re like, why have you never spoke about it before? <laugh> and they’re like, wow, it’s just, we’ve always been told that it’s just something that we have to get on with. It’s just a painful period and crack on.

Crystal:

I was really shocked by that because I don’t actually suffer with endometriosis. Although I’m my trustee of the charity. I suffer with polycystic ovary syndrome, but I don’t have endo. But while I was training to be a yoga teacher, because you, you know, find out some health information from your students, I was finding more and more people with, of endo in my class until there were some classes where, you know, the entirety of my students had endometriosis. And I’d barely heard about this before meeting Jodi. So it’s, it’s really shocking and it’s not spoken about enough. It’s not spoken about enough by cis women. So to be trans male or nonbinary has got to be even even more difficult to broach these subjects, you know, to, to speak about these and to seek help. If you have symptoms,

Marianne:

I know I’ve worked with, uh, some trans males who suffer with acne, for example, and they won’t wanna speak to their doctor about it cause they fear the are gonna be judged. The biggest fear that a lot of trans people have across the board is that if I’ve got something and it means I’ve gotta stop my meds, I’ll just keep suffering. cause actually I’ll suffer more without my meds. And I think, you know, just listening to talk there, if it’s difficult for cis women to about this. And interestingly enough, you know, I’ve got friends who I’ve spoke to that have been to the GPs and they have heavy periods and everything you described and they just kind of get told to get on with it. And this little part of me just wonders, you know, is there a test that can be done that should be done when somebody complains about the periods are complains about the pain that they have.

Jodi:

Unfortunately it’s not that easy. The only way of diagnosing endo at the moment is through an operation, which is one of the big reasons why I think it goes undiagnosed for so long as well because it’s one of them, that’s a diagnosis of, um, elimination. So you go through every single test under the sun before they’ll go, okay, maybe we need to have a look. So I think that is one of the things that is a major barrier. Another one is the fact that GPs aren’t trained enough because GPs are amazing. They know such a broad spectrum of things they need to know. But sometimes like with endo, they don’t know enough about it. The nice guidelines aren’t fantastic with the pathway of diagnosis. It it’s really, really hard.

Helen:

It is hard. Isn’t it? And Marianne just taking you back to your point, I feel for those trans guys who want to go to the doctor with their skin, if they’re scared, the doctor’s gonna say, well you’re silly bugger why are you taking that testosterone for look at your it’s your fault, isn’t it? Do you know what I mean? And then I can imagine, you know, people going to their doctor with pelvic pain or heavy periods, and then you, you know, the doctor’s like working out what to do and if you’re trans, it’s like, oh, well look that will be your hormones. Stop your hormones. Then let’s see if it makes it better. We’ve gotta again, get away from the fact that the be all and end all is not your you’re taking hormones. It must be that or stop taking hormones. You’re silly, silly, fool.

Um, it must be that and it got to move away from that premise. Haven’t we? The other thing that struck me, Jodi, as you were talking was about GPs, you know, not being trained enough in endo. And it takes me back to my GCSE maths when you’ve got two things, but are compounding each other. When you put ’em together, you don’t add them, you multiply them. So if you’ve got a GP who’s not very well, um, knowledged about the endo and then also not very well informed about trans it doesn’t just add that it’s double isn’t it. I can just almost see their face when someone transman comes in and says, I’ve got, I’ve still got periods all over the place. I’ve got pelvic pain. Do you think I might have endometriosis and I can just imagine the GP going I’m out of my depth.

Yeah. Yeah. Very, very tricky. And then the other thing I was thinking as well is when you were talking about periods being painful or heavy or absent or erratic, it just sounds so horrible and painful. Um, and then you’ve got for trans people and some nonbinary people, or maybe the dysphoria that goes along with having periods anyway, and you’ve gotta have them. And then they’ve got to be a complete, utter nightmare for you because you’ve got end endometriosis on the top that gave me period dysphoria, nevermind, poor trans people out there who experienced that. It was really sad.

Crystal:

Yeah. Another thing that we found through talking to trans men was that it was extremely triggering to be sent to a gynecology department that although a lot of them said that medical staff, once they’d had that initial conversation of, okay, I’m trans were quite supportive. Generally there was a consensus that it was incredibly triggering even with support, just because of the way that the room set up. The fact that, you know, these guys are presenting very masculinely, a lot of the time and sat in, in a waiting room with lots of cis women, we even are considering setting up some sort of chaperone service for trans or non-binary people that feel uncomfortable sat in those rooms so that we can just sit alongside them and take a bit of the focus away if that’s, you know, something that would be beneficial for them.

Marianne:

I was thinking, just going back to when you said about the language and there reality is we’re living in a world that is very binary, but it’s changing and trans people are more visible now and there’s a big push back from lots of different areas in society about changing the language and that, you know, if you talk about gynecology that it is very well, it is female orientated, maybe, right. We sold to a degree, but it doesn’t mean to say that it cannot be inclusive of all people. And I think that’s, you know, it’s the same with it. Isn’t just about the language. It’s about the environments that we enter. I remember when we did the podcast with Freddy McConnell, Ellen and, uh, Freddy, uh, had a baby and was sat in the waiting room at the prenatal clinic and the nurse coming out and saying, what are you doing here? You know, how dare you invade this space type of thing? You know, actually I think you’ll find out having a baby, but you know, the awkwardness of that and how that makes people feel. So it’s just educating. We, I mean, me and Helen have been working with some NHS people to try and help change the mindset of, uh, employees of the NHS that, you know, don’t just automatically assume, you know, there’s a whole range of people now and that’s only gonna get more. So yeah, it’s difficult.

Crystal:

I think it’s just a case of slowing down and considering what’s being said a lot of the time, which it, you know, is probably quite difficult with the NHS under quite a lot of strain, but you know, this is really training that should be there for all staff, including staff that work in gynecology departments.

Helen:

I think the other thing as well is if we perfect trans healthcare so that people who have a gender identity history, that’s quite obvious from an early age and are able to make those decisions younger in their life about which gender transition pathway they wish to take at an earlier stage. And so therefore they avoid the wrong puberty. We’re going to be dealing with in healthcare, a group of people who you wouldn’t know at all, from looking at anything that they were assigned a different sex at birth and those people, like you say, um, Crystal need to be protected in waiting rooms and in hospital departments and in GP surgeries. And although I, you know, I think what you’re suggesting about chaperone is a really good idea. I’m ki- also kind of thinking, goodness gracious, it’s what a situation where we need to offer someone protection to go to the doctor or to the hospital.

But having said that we do at the moment we do. And I think you’re completely right. This is about education. It’s funny. I, I, it’s not funny at all. I was reading some newspaper articles about the cervical screening and you know, if you have a cervix, you need to be screened. It’s, it’s easier, isn’t it? Because how do you know if you’ve got endometrial cells in your body somewhere, you don’t know, do you and I was looking at some newspaper articles about cervical screening and you know, they love the shock picture, don’t they? So they had the picture of a trans man with a heavy beard and very masculine skeletal structure in the lithotomy position. So, you know, on their back with their legs up in stirs, uh, which is the, a very female, uh, medical examining position. And I looked at and I was like, whoa, oh goodness. Um, and you know, even someone like me, who’s immersed in this work every single day, that shock factor, it still shocked me, you know, and I’m sure the newspaper wanted to shock everybody and it, and it still managed to shock me. I think I’m pretty educated in this arena. I think I’m pretty open-minded and yet it is still out of the ordinary and we’ve got to break that down haven’t we

Crystal:

I think we can learn a lot from the trans and non-binary, um, community, especially where endo’s concerned, you know, myself and Jody have spoken about this a few times. We, we really can’t see the benefit of this being labeled as a woman’s disease in the first place. You know, as Jodi’s already said, it’s found all over the body, you know, cis men of, um, even presented with endos. So what is the benefit sadly, you know, is happening. Some, some women with endo are becoming very protective over endometriosis. It’s a woman’s disease. And we really, you know, we can’t see any benefit whatsoever, um, to leave in these people that have endo, they suffer with endo, they deserve to have a voice at the table. Why would they be left out? And you know, it may be that, you know, we’re having to expand our minds and think about things we hadn’t considered before, but surely that’s only gonna make us better people in a better charity

Helen:

That Marianne that’s just about an absolute zero policy on discrimination. Isn’t it, you know, women claiming that this is their disease, that’s just gotta be stamped out in the school playground. Hasn’t it? I don’t know what

Marianne:

You think. Marianne. The truth of the matter is we sit here talking to different people, Helen. And, uh, I remember when we spoke to, was it the royal pharmaceutical society and all the way through the conversation, they can say, well, you gotta understand, is that our me, some pharmacists are ignorant to this. You know, they’ve never, and towards the end of, I just got fed up of hearing, how can you be living in 2021 and not understand that we’ve got gender diversity? And it really is. I chose to be ignorant.

Crystal:

If there’s a gap in the knowledge, then feel that gap.

Marianne:

You Might be in a village pharmacy. So, and where, and you never see a trans person, it never comes into your awareness, but you can’t deny that, you know, we exist because it’s all over the media. We choose to be ignorant. And I think that’s one of the issues that I kind of have certainly with the medical practice, the people we trust to look after the health of the nation to be so ignorant about this and that this shouldn’t be about newspaper headlines of, oh my God, we’ve changed. You know, the maternity ward name, it isn’t about excluding anybody. It’s about more inclusive. It could be changed without a thumb fair that allows everybody to feel included in there. So yeah, I do sometimes really, really mad that people claim ignorance as some kind of defense. And the fact that somebody does have to have a chaperone kind of tells you how far behind we are, are a, I still believe that all trans people need advocates and that, you know, we, there’s not enough of us. Our voice isn’t big enough. So we do need it to be bigger, but to have a chaperone, just to go into a hospital, to get the care that you deserve and the respect and the dignity, it, it is it’s sad.

Jodi:

Yeah. It’s, it’s really sad. And like Crystal said, how hard is it to just fill a gap? If, if you don’t understand it, because I didn’t to start with, I was like, I need someone to come and teach me about it. And Crystal was the perfect person to just go, well, maybe you just need to open your mind a little bit. And once I did, I was like, oh my God, this is definitely a gap in the knowledge that needs fill in, but it shouldn’t be, it really shouldn’t still be a gap in knowledge anymore. What’s a half an hour e-learning module sent out to all your workers. It’s not hard.

Helen:

Let’s make that module. We need to write that module. <laugh> half hour lunch break on gender diversity and respect. Absolutely. Absolutely. <laugh> I’ve been thinking while you’ve been talking, I’ve been thinking about the research in the back of my mind, because what I’m gonna be really interested in is transmasculine people who come forward for, uh, gender affirming medical care later in life, who’ve suffered with endometriosis as a person who has a, an estrogen hormone profile and what happens to their symptoms when they switch their hormones, because it’s the kind of research we’re not allowed to do. You couldn’t say to a hundred women, cis women stepping gently over my language here, <laugh> you couldn’t, um, say to a hundred cis women with endometriosis. I’d like to swap your hormones and give you testosterone to see what effect it had on your endometriosis, because that just not, wouldn’t be an ethical study to do, but it’s almost like trans masculine people are going to be giving us that research. Um, and those answers willingly, if there are any people out there who have endometriosis in the past, whose symptoms have either stayed the same or got worse or changed when your hormone profile has changed, you know, we would really love to hear those stories because they’re gonna really help, um, inform medical research in the future.

Jodi:

Yeah. I would love to hear them stories because like I said before, me and Crystal have spoke about it so many times before that these people could be the key to endo treatment. And it would be really, really amazing for someone to do that research.

Crystal:

I think there was, there was a belief as well in some trans men that were medically transitioning that the testosterone would stop the endometriosis. And I know there’s a fantastic guy, um, in America called Corey Smith, who does a lot of campaigning about endometriosis. And he thought that his testosterone would stop the endo, but it didn’t. I think it calmed down for a little while and then it returned with a vengeance. So, you know, as we know, everybody is very individual and hormones affect bodies in different ways. So

Helen:

I think it depends as well, doesn’t it on whether the symptoms come back because of the damage that the endometriosis did and the scars that are there, or whether it’s because of the actual cells of endometrium that are still sparking and still causing difficulties in

Jodi:

Pain. The issue we have is if you have surgery for endometriosis and some of it is missed it’s then produces its own estrogen, which then feeds it, which then makes it grow. So if someone does transition and is put on testosterone, their endo that is present in their body could be producing estrogen. So it may be a case of these people. If we can research them, <laugh> not like a lab rat, but yeah, if we can research what is happening to their body through transition, I do think there are going to be a lot of answers in that, or a lot of discoveries at least.

Marianne:

I was gonna say, was that just from my past life, when I used to work in conference, we used to, to work on pharmaceutical shows and remember when drugs were coming out of patent, they would always try to find other uses for it. And I remember one in particular you might, uh, know I, well, I think I know the drugs EDEX yeah. I remember they found that, uh, it would help people with cataracts and suddenly we went from doing, I think it was heart. Uh, we was the main thing we’ve done in conference to doing suddenly optical because he wanted to get as much out of the drug they could, before it came out. Patent, the point I’m making is that when people are on certain medications, they find that there are other ways and how much the trans community could help on so many levels. You know, if we wanna say that their care is experimental, it is a golden opportunity for the medical world to become better educated on so many levels. I would’ve thought

Jodi:

Definitely. I really do think the medical community is missing a trick. <laugh>

Crystal:

there is another area where endo and trans, uh, medical treatments overlap as well, which is with puberty blockers because the puberty blockers are actually used as an off-label treatment in endo.

Helen:

And that’s one of my most often quoted things is when I’m saying to GPs who tell us that, you know, they have no experience of using a, a puberty blocker in someone of this age or that age, you know? And I’m like, well, you have people with endometriosis and you use it all the time. You know, it’s just switching off hormones that are causing problems. It’s kind of like, we we’ve talked about this before. It’s, it’s a shame. They got that name really? cause they don’t just block puberty. Yeah. They actually stop hormones of puberty and there are lots and lots of good reasons, um, why that might be necessary. The other group, of course, that be interesting to see develop are again, the young trans-masculine people whose uterine cells, their womb cells never experienced an estrogen hormone profile. So it’ll be very interesting to see the incidents of endo in trans-masculine people who haven’t been exposed to estrogen. So I’m actually really excited about <laugh> with, with my medical hat on my head. Sometimes I get very excited about, you know, what we can learn and

Jodi:

Yeah, yeah, definitely. There is so much that can be learned about things that have been traditionally seen as female conditions that I think we’re gonna find out aren’t necessarily female, just female conditions. Yeah.

Crystal:

That’s it. When communities work together, you can learn by much yeah.

Marianne:

As a trans person. And what I read on social media that the, the whole debate is very binary, that there are only men and there are only women and that these are big argument now about biology. And you know, if you’ve got this of that part, all depend and actually just listening to this, you know, you’re saying there are some cis men might have endo. And the reality here is that biology isn’t that cut and dry. And I think maybe some of the resistance from the crossover of research is that refusal to actually come away from the binary. They almost society likes the simplification of gender, but actually it’s holding us back from a medical perspective at the very least. And I’m sure there’s other areas. So the, you know, the refusal to the are the, the resistance to change is to just move away from the binary is so limiting actually on research.

Jodi:

It definitely is. And I love coming across new little nuggets of information that like, and it seems to be trans people that are doing the research because they’ve gone. Well, no one else is doing it. So I’ve gotta do it was the same with, with me. I went into endo research because I’ve got endo and there was nothing. Um, so it’s really, really exciting to come across these, these little bits of research that have really excitingly been done now that are looking at bodies as a body, not as a male or female, it is a body and just cause it has this bit or that bit, sometimes it doesn’t actually matter.

Helen:

I mean, I always say the croissant, I can never remember where the croissant is. French in French is female or male, but it doesn’t really matter because they taste the same. I’m sure if it was a male croissant or a female croissant, it would just taste the same. And they’re especially nice if they’ve been crisped up in the oven, but I really don’t think it, the gender of the croissant matters. And actually why does the gender of a human matter? You know, what is gender, why do we have to fit into one particular gendered role? I think some people have asked how can we help trans people lot to go to a very gendered hospital department? So, you know, the obvious example here is, is the gynecology department in a hospital. The majority of people in there are going to be cis women. Um, that’s the nature of the beast unfortunately and how do we help them?

And I was kind of thinking that pre-warned is pre armed if it was my department and I, and I, I was the, the medical team there. I think it would help everybody. I feel that I’m gonna give some advice, which I wish I didn’t have to give, but I think it might help just for now while wait, everyone’s catching up with the education side of things. And actually, you know, if there is a trans masculine person, who’s gonna have to go to a gynecology department, which feels very female gendered, then a, a letter in a, for an email, a phone call just to say, listen, you know, my name is this. I am on your, your list. I’ve got an appointment at 10 past 11 on Tuesday, the 10th, just to let you know, I am a transgender person. I appear to be on the outside visually very masculine.

And I know that this can sometimes be a shock for people when, when I’m presenting a very female, um, setting. And although they shouldn’t have to at all, I think in the interim, um, steps like that can help. And then, you know, when you’re in the waiting room, you don’t have to shout it out, but you could have it on a little bit of paper. I just want to give you this to the receptionist. I want to give you this. Please. Could you read it please? Could you share it with the nurse or with the, with the doctor? Just want to make you aware of the situation. And I think having that pre-warning might just help. I dunno what you think, Marianne, I mean, you’ve been in gendered situations in healthcare. Do you think that might have helped or do you think I shouldn’t have to do that? <laugh> and

Marianne:

In a broader sense, I have, uh, I hate to admit this, but I went on the speed aware course, which has nothing to do with transgender health. I actually did when I had to book on it, my license was in my old name, but I, I did kinda warn them and to be fair, they treated me fantastically. You know, I didn’t have to wave my license in front of everybody. They discreetly looked at it and yeah, they realized it was the right person. When I go to the doctor surgery, I’m always worried. Cause even, you know, some doctor surgeries put the name up in neon lights, don’t they, in our particular surgery, you can actually check in when we haven’t got a pandemic, you can actually check in by just typing in your date of birth. And then your name comes up and tells you where to go and see it.

And then the clinician walks out and shout your name. And even though they’ve got it right on the system, they’ve not read the system. Right. And suddenly the shouting, my old name out and I’m sat there surrounded by all these people. And I kind of, you have the walk of shame. Likewise, when I went for my vaccination, the text came through in my old name and I was thinking what they got, I, when I got down there, they asked my name. I said, it’s Marianne and oh yeah. So they got it half right. But I’m entering every situation, not knowing what I’m gonna face. And that is really, really uncomfortable. And I just think, you know, medical practices, I think all areas, whether it’s the, you know, speed awareness course, whether it’s the police station, whether it’s the doctor’s surgery need to just start and get their act together with this.

That it’s not that actually that complicated. It just means people need to be aware. Uh, so yeah, when you’re starting to talk about gynecology departments and something went through my mind, actually I was gonna say, when my children were born, you know, rightly it is all geared towards the mother. You know, you know, the fathers are definitely not catered for, you know, in the waiting areas and all of that. And I can underst that if you’ve got waiting room full of pregnant women who may feel vulnerable and they don’t want men, but actually the building designs are the waiting room designs could be better so that we don’t have to mix the, that if there was a, a trans guy going to the gynecology department, he’s not forced to sit with all the women. They could just have some chairs that are perhaps back to back, you know, it’s, it is not about building walls, but it’s about creating spaces with the floor space that we’ve got. And I seriously don’t think that’s that difficult.

Jodi:

That’s actually a really good idea. Like in our endo clinic where we go, there’s actually like a big waiting room <affirmative> but off to the side, it’s like just a little C-section bit that has more chairs in. And I’m guessing they could, maybe if we like spoke to them, make this like a little area for trans or non-binary people or people, it just didn’t wanna sit with a load of women. <laugh>

Helen:

Yeah. There’s so many solutions and Marianne, when you were speaking, then I was thinking, complain, Marianne, complain, complain, you know, write to the vaccine, people write to the, but then I’m thinking you must get tired of it. It’s like every situation you think, oh God, does that mean another letter of education rather than a letter of complaint? You know,

Marianne:

There’s a part of you. We just want to get on with our life. This is what equality’s about to feel valued, to feel that I’m not a problem in that situation. And yeah, I did stand the ground with the GP practice and uh, cause they refused to change my name at one point. Cause as you know, it’s well documented. I’ve never changed it officially cause I just choose not to for my own reasons, but actually I’ve got a preferred name and I know there are lots of people go to the doctors who, you know, the known as John, but the call out as bill, because they’ve always been known as bill, despite their birth name, everybody falls in line with that, God forbid a trans person asks for that same respect. But yeah, it is. This is where I say, actually this is about allies. There’s a parent said to me, you’ll know more about this and me Crystal. There was a parent that said to me, once I’m the bulldozer that goes and clears away from my child.

Crystal:

That’s definitely how you feel as a parent of a trans child.

Marianne:

Definitely. My child’s never gonna see this as long as I’m here to, but all the trans people certainly don’t have that bulldozer sadly. Uh, but I still think we kind of need it. So yeah, this is where allies come in. You imagine a cis person going into the, uh, my GP practice saying, can I see your transgender policy please? And you know, being able to question it because it would be far easier for them talking about, uh, healthcare for trans people. And I think this is linked to endo, but I’ve got a client who is non-binary and they only attracted to women. They go to the doctors for the, uh, to get the pill and they have to go through the same questioning as if they’re gonna have sex and have babies and treated as if they are a cis woman and the effort they go through. And it just linked it, you know, imagine dealing with endo the conversations and how they’re gonna be. So, uh, yeah, that, that’s another area where healthcare can change.

Crystal:

Yeah. About bodily autonomy. Really. Yeah. And, but you know, we shouldn’t have to jump through hoops to do what we want to do with our bodies. So

Jodi:

It’s the whole hysterectomy argument. Isn’t it like people with endo are quite often dished out hysterectomies left right. And center. But as a trans person, you are told that you’re not allowed. That confuses me like immensely.

Crystal:

There’s definitely a double standard going on here when a, a cis woman can get a hysterectomy quite easily because of endo. But yeah, trans people are being questioned ruthlessly

Helen:

<laugh> inequality in healthcare. And that’s why, that’s why the four of us are here today talking about it to, to make change. So that inequality is in the past. I think on that note, I’m just looking at the four of us here today. You know, we have gender diversity here today. We have endo diversity here today. We have parents of gender diversity and hormone diversity here today. So, and looking at us, we just look like a bunch of women. So you can’t tell what’s on the inside by just looking at the cover. And I hope that people who’ve been listening have learnt about endo and learnt about the interface between minority groups, again, coming together and educating those, those who are the majority, I guess. So I hope today’s, um, podcast has been interesting as always I’ve learnt a lot and I’ve really enjoyed talking to both of you. So thank you so much. Thank you. Thank you for having us and happy pride month.

 

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