Endometriosis Awareness Month: Expanding the Conversation Beyond the Binary || Episode 22

Endometriosis is often framed as a “women’s disease,” but the reality is more complex. In recognition of Endometriosis Awareness Month, this episode of Menopause Unscripted explores an area of care that is rarely discussed: endometriosis in transgender men and gender-diverse individuals.

Research on endometriosis in trans populations remains limited, yet many individuals assigned female at birth continue to experience pelvic pain, endometrial changes, or persistent symptoms even while using testosterone or pursuing gender-affirming care. These gaps in research and clinical understanding can leave patients navigating pain without adequate support or recognition.

In this conversation, we examine what current research reveals about endometriosis in transgender men, why this condition is frequently overlooked in gender-diverse care, and how medical systems can better support patients experiencing chronic pelvic pain. We also share educational resources and organizations working to expand access to inclusive care and information.

Below are several studies, educational resources, and organizations referenced in this episode for anyone looking to learn more or find support:

https://www.instagram.com/charliefrost222?igsh=NTc4MTIwNjQ2YQ%3D%3D
 https://pmc.ncbi.nlm.nih.gov/articles/PMC11274608/
https://pmc.ncbi.nlm.nih.gov/articles/PMC10501128/
https://www.mdpi.com/2227-9059/12/7/1481
https://pubmed.ncbi.nlm.nih.gov/33583596/
https://www.treatitqueer.org
https://www.uclahealth.org/medical-services/gender-health
https://www.endofound.org

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Menopause Unscripted is a women’s health podcast hosted by Dr. Heidi, the creator of Hey Dr. Heidi. Each episode delivers expert insights, real-life stories, and evidence-based information to help women navigate perimenopause, menopause, and post-menopause with confidence.

This podcast covers topics such as menopause symptoms, hormone replacement therapy, pelvic health, sleep changes, intimacy and relationships, osteoporosis prevention, brain fog, mood shifts, and healthy aging. With a focus on science-backed advice and approachable conversation, Menopause Unscripted offers clarity, support, and practical tips for every stage of midlife.

Whether you are experiencing early menopause symptoms or seeking resources for post-menopausal health, Menopause Unscripted is your trusted source for reliable information and open conversation.
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Want to be on the show?
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Transcript

SPEAKER_00 0:02

Thanks for joining me on Menopause Unscripted. Remember, the change is just another beginning. Welcome back to another week of Menopause Unscripted. I am Dr. Heidi and I'm thrilled to join my friend and former patient today, Charlie, who is here to share his story with us. Charlie, can you tell us just a little bit about why you're here and why we're talking about your particular personal journey today?

SPEAKER_03 0:29

Yeah, of course. So, I mean, I've been a patient and a friend of yours for a very long time, since I was very young, a teenager. And um, when I first started seeing you, it was about back pain, and a lot of my back pain was worsened around my period, and um, and so I started to get some support from you, and and throughout the years my pain and my experience with pain and disability changed so much. Um, but I feel like we always we had a very strong healing relationship, and um, and I have come to you when I saw that you were doing more trainings around, you know, and support for folks with pelvic floor physical therapy, and I just realized that I was getting to a point where I tried so many things with my symptoms that at the time were seeming like they were leaning towards endometriosis, um, that I decided to kind of explore pelvic pelvic floor PT. Um, and it just opened a conversation for us about, you know, what I experience as a queer and trans person dealing with the medical system, um, you know, being disabled from endometriosis and all of the different experiences that I've had navigating multiple countries of healthcare systems. Um yes, but you know, more recently kind of trying to orient myself within the California public health system. Um and it's been a huge challenge, but I've also like, you know, fought for a very long time to get a diagnosis of endometriosis. So um, so yeah, I just wanted to kind of talk a little bit more about what I've gone through and how I got here. And um I think for me, a big part of why I wanted to come on the podcast is because I think that a lot of queer and trans people have really negative experiences with healthcare providers and a lot of issues with reproductive health and genital health issues. So, you know, I think we have a particular subset of experiences that make it really challenging for us to get the care and the support that we need. Um, and oftentimes those spaces can just be really triggering for us. So I think, you know, when we first started having these conversations, and you came to me and you were talking, you know, talking about how we can make healthcare spaces more inclusive and welcoming for non-binary and intersex and trans folks. I was very excited because I realized that my experience was not just me as an individual in my experience, but it was actually something that could help other people understand how they can move through these systems with with care and intention for themselves and their energy and time, of course.

SPEAKER_00 3:16

And you do you are part of a community that I would say is quite underserved, and I think there is a lot of myth and misunderstanding. And frankly, us as medical providers, we are really trying to catch up with pelvic health in general, and I don't know if you know this, that it was called women's health until just a few years ago. So just the changing of that language, I think, has made just that be more inclusive, but it's just one small step, yeah, right? And knowing that everyone, regardless of their gender and their um like their status as a human, has a pelvic floor and get experience issues, and then the overlying hormones and maybe hormone therapies that people are experiencing are all gonna have an effect and play on that.

SPEAKER_03 3:59

Yeah.

SPEAKER_00 4:00

Can I ask when did you formally get your diagnosis of endometriosis?

SPEAKER_03 4:04

I got my diagnosis of endometriosis in March of 2024. Um, I was still living in Canada, and I was really having trouble finding someone who was a specialist in endometriosis and was covered by the health insurance that I was currently having, or right, that I had back then there. Um, so I actually came back to the States to get health care, and um I was still covered by my parents' health insurance for you know six more months when I was like, I've hit this limit with my pain. I can't continue like this. It felt like every day I was trying to show up to work and I was being overwhelmed by this level of pain, constant fatigue, none of the treatments or support or kind of tools that I was seeking out were helping. And um, and I told my parents when I was, you know, back in town for over the winter holidays of 2023 into 2024, and I saw a doctor and I made the decision like I need to get a laparoscopy. I need to know that I am this is what I'm dealing with because for so many years I was really, really misinformed about what was happening to my body, and um I was misled a lot. I have always had pain around my period, like since my first period when I was 13, I've always had extreme pain, bloating, back, pelvic, hip tightness. Um, and I was told, yeah, it's normal. This is just something you have to put up with, you know, as someone who's assigned female at birth. Um, and as a child, you don't know better than that. And um so, you know, I thought it was normal because it was normalized that a lot of young people were put on hormones and birth control to try and control the pain that they were having around their period. Um, but I was on that, you know, starting at age 13. And for years I would try a different birth control with my gynecologist and just would have so much trouble. There would be so much fluctuations in my skin and my weight and my eating and my water retention, feeling so bloated that I couldn't eat or drink water without feeling like I would get sick. So I was having all of these symptoms, um, but I was really misled because I had an ovarian cyst once. And so then every time I would come up with these symptoms to doctors, I would say, Yeah, you know, I had an ovarian cyst once, and they said, Oh, well, it's probably that.

SPEAKER_00 6:47

Really kind of a dismissive delving in.

SPEAKER_03 6:50

Yes. Um, you know, all the while not approaching the chronic condition of polycystic ovarian syndrome or anything like that, right? There was no addressing of the chronic issue. Um, so then, you know, fast forward years of kind of dealing with this, primarily pelvic and and bladder pain and pain around my periods, I decided to get laparoscopy in what did I say, March of 2024?

SPEAKER_00 7:16

Yeah. Somewhere in that range.

SPEAKER_03 7:18

Yes. Um, and I I woke up from surgery and my doctor said we found endometriosis on your pelvis, on the outside of your uterus, and the tissue between your pelvis um and your uterus, and and I was very much so affirmed in my experience.

SPEAKER_00 7:38

A little bit of relief knowing.

SPEAKER_03 7:40

Yes. Um, and it was also um at the time that I decided to have surgery, I started looking into online communities of people who experience endometriosis and have, you know, endometriosis symptoms, or are seeking or have gotten an a diagnosis. Um, and I just realized that there were so many people who were seeking out the kind of support and medical care that I was, and also people who were struggling with how to manage endometriosis and their relationships, and their friendships, and their romantic and sexual relationships, how to have these conversations. Um, and I just realized, oh yeah, I'm really not alone in this. Like this is this is both a cultural phenomenon, but it is also like a a social issue because the way that you know science and and research around endometriosis has happened has just been severely underfunded and um very done, very much so done under biased conditions because a lot of the medical field has been done that way. Absolutely.

SPEAKER_00 8:51

So if we're having a difficult time getting, you know, research done around just cis women, like trying to get into smaller groups of people who identify in other ways, and that just disproportionately, like the amount of funding just goes down and down and down, and there are studies now, and we both found some of these, but it is still like very small percentages.

SPEAKER_03 9:14

Yeah, and I think you know, we know a lot of the kind of statistics around endometriosis is you know, one in six women, you know, who experience periods experience endometriosis, right? And so I'm looking at this data and I'm thinking, okay, well, I don't identify as a woman. I'm sure, you know, my mark was counted in there by whatever doctor it would have been. Um, but I think it's um the way that queer and trans people experience pain and access to care is very different structurally and fundamentally because of the access, the limits we have in um in accessing health care that feels affirming to the point where a lot of folks in my community just feel like there's no point in going to the doctor because it's not only not gonna give me answers about my health condition, but it's going to be additionally traumatizing and dehumanizing.

SPEAKER_00 10:15

Yeah, who's exciting? And did you feel like at this point, I have to ask, did you feel like you almost said like disassociated from this part of your body? Like, had you gotten to that point?

SPEAKER_03 10:24

Yes, very much so.

SPEAKER_00 10:26

I feel like I kind of hear that over and over again. It's like very traumatic. I'm disassociated. It's really difficult for me to like even talk about this part of my body, let alone consider having it treated. Yes. Had you started testosterone therapy at this point or not yet?

SPEAKER_03 10:40

So I started testosterone right after I decided to have surgery. Okay. So it was before surgery. Um, I had a doctor at a clinic in in Canada who was helping with my treatments, and I was really clear to him from my first appointment with him. Hey, listen, I am, you know, I and my doctor in the States are quite confident that I have endometriosis, that I'm going to be having this surgery in March. You know, what would you recommend that I do? Because I want to start hormone treatment and um and I want to be transparent with my doctor. And he said, you know, I absolutely would recommend that you communicate with your doctor. It might impact the kind of um, you know, if you change birth controls after your surgery or whatever it might be, it's really important to communicate with your doctor what hormones you're using in order to maintain a healthy balance. Um and and so I was very nervous to have that conversation with my provider. Um I kind of shared and forwarded uh a breakdown of you know, a kind of summary from my my gender doctor in Canada um to my and my endo surgeon specialist here in LA. And um and she responded pretty positively, you know, yes, that is completely fine if you start treatment before surgery, you know, this is not gonna impact your your surgery recovery or anything like that. Yes. Um, you know, the only thing to consider is the kind of birth control that you might want to take or, you know, that you're on now. Um, and at that point I had been on a progesterone only birth control for at least a year, so um, it was not a concern for me, but I know a lot of people, you know, have just been on uh estrogen or progesterone combination pill for a while. Um, and it can be a challenge to make that transition if you are going to medically bring in testosterone to the mix and you already have uh, you know, a difference in levels of estrogen. Um yeah.

SPEAKER_00 13:02

So let's talk about that for just a second because I want to keep going with your story, but I think this is a great place to pause and talk about the balance of the hormones.

SPEAKER_01 13:09

Yeah.

SPEAKER_00 13:10

So, you know, with our conversation, things that we've talked about just like over coffee, is you know, how do trans and intersex people experience hormonal changes differently? And how what happens with those changing hormones as it pertains to just normal aging and experiences of perimenopause and menopause? Have you started any of this yet? Like, are you or are you at not quite?

SPEAKER_03 13:33

No. Okay, like no.

SPEAKER_00 13:34

I mean I have a really hard time remembering how old everyone is.

unknown 13:38

Like we are.

SPEAKER_03 13:39

No, it's all good. No, no, it's um, I mean, I can tell you like where I am, you know, how my body's responded, you know, with the testosterone. So basically, I have not had a period for over a year. Um so I don't know where that puts me.

SPEAKER_00 13:56

Well, I mean it's testosterone will do that, right? Yeah, it will certainly reduce that and make you so that you are maybe not ovulating in a normal way. But you or you could be ovulating, but just not having enough of a lining to shed.

SPEAKER_01 14:09

Yes.

SPEAKER_00 14:10

You know, where you're you know you're ovulating, but you're not really having like a lining to shed. So there's that. Have you experienced any other changes with pain, dryness, other things that we might associate with reduced estrogen, um, with any of those symptoms?

SPEAKER_03 14:25

Yes, definitely. I mean, of course, it's for me, it is all mixed in with what happened after I got my surgery and like my recovery from that because it all happened at the same time.

SPEAKER_01 14:37

Let's talk about it.

SPEAKER_03 14:39

Yeah, so basically when I had surgery, um I also had an IUD put in.

SPEAKER_00 14:44

Okay, that's the progesterone one? Yes.

SPEAKER_03 14:46

Okay. So um, you know, my gynecologist encouraged me to do it while I was already under, and I thought, how lovely would it be to not have to experience that while awake? Something that no one should ever have to experience awake.

SPEAKER_00 14:59

I had to have my first one put in under anesthesia because I fainted when they were putting it in. I fell through the stirrups on top of my doctor. And I thought it might have perforated my uterus, and I I mean I never had my cervix dilated ever. I didn't have a kid. Yeah, it was so remarkably painful, and I know this is not everyone's experience, but yeah, then they put me under, and I was like, they should all be done like this. Yeah, like they're so painful. Who says you can take like two Tylenol and this is okay? No, the answer is nobody's.

SPEAKER_03 15:26

Yes, literally. Yeah, so I was like, okay, you know, if if that's the quick and easy solution, you think it's gonna manage my and no after the surgery? Like, yes, absolutely, get it done. Um, and I was just very my first few weeks after surgery recovery, um I had very little pain. I was almost on like a high of like, oh my god, wait, I went from daily level 7, 8, 9, 10 out of pain, um, 10 out of 10 pain, and then all of a sudden it was gone, so I was like, wow, this is so much better. Um, you know, kind of just soaking up the affirmation of, you know, I do have this disease that I thought I did for so long, and then and then also the reduced amount of pain. So the first few weeks were really good. I started to have some stabbing pain, like, yeah, I don't know, two weeks in, three weeks in. Okay. And at first it was like once a week, but it was pretty debilitating, and it was distinct from my endometriosis pain. Different pain. Very different. You know, I mentioned to my doctor, hi, I'm having this pain, it's very different. You know, my other pain was radiating. This pain is very sharp, it's very specific, it's on one side. All I hear back is that's completely normal, you just had surgery, blah blah blah. And I said, No, I know that I know that there's something wrong. This is not um, this is not soreness pain, this is stabbing pain. So I ended up having that pain, and it became increasingly more frequent for six months. Oof. And alongside that, my bleeding was completely changed. Okay.

SPEAKER_00 17:14

So better, worse.

SPEAKER_03 17:16

Much worse. Okay. It was thin, bright red, and I would bleed everywhere. Oof. It was not like the normal texture of puri blood that I would have. It wasn't contained by any menstrual products that I would use, and it would feel scary to see that kind of blood and not know what is happening with my body.

SPEAKER_00 17:36

Absolutely. Did you have any experiences of anemia with that?

SPEAKER_03 17:39

Yeah. Okay. Yeah, so I have been, you know, iron, my iron has been low for a while.

SPEAKER_02 17:46

Okay.

SPEAKER_03 17:47

Um, so yeah, so I was I I was concerned about that, and I was taking iron supplements and they weren't doing anything. And I had been on iron supplements for years, and my doctors kept on checking my levels and they wouldn't do anything. Okay. And once again, they didn't do anything about it. I'm like, okay, so your treatment isn't helping. Yeah. And what was the end resolution then? So ultimately, I got the IUD removed because I had a feeling that that was the problem. Once that I had it removed, the stabbing pain was gone. Okay. But that was, you know, eight months after my surgery. It only felt like then I started to heal from that surgery. So I was having a lot of issues and pain. You know, that pain that I was having, it was around sexual activity, but it also wasn't. It was around urination and it also wasn't. It wasn't something that I could track. Oh, if this activity, if I do this activity, if I push my body in this way, if I do this kind of exercise, if I'm in this position, there was no consistency at all. Then after I kind of healed from the IUD extravaganza, whatever you want to call it, and hell on earth.

SPEAKER_00 19:01

So I'm gonna start calling it the hell on earth.

SPEAKER_03 19:04

The hell on earth extraction. Um, then it felt like I could heal and I got a better sense of what my actual pain triggers were around sexual activity. And it became pretty clear that penetration was a trigger for a lot of my intense pelvic pain.

SPEAKER_02 19:22

Okay.

SPEAKER_03 19:23

And what would happen would be after penetration, I would have this growing aching pain that would turn into a kind of crunching. It felt like my organs were being crunched. Okay. Um, and in my head, I'm thinking to myself, okay, I've just had sex with my partner, whatever, or masturbated, you know, I need to make sure I go to the bathroom because I have chronic UTIs. Right.

SPEAKER_00 19:50

And we've been told that forever. Yes.

SPEAKER_03 19:53

Please pee, you have to pee, you have to pee, you have to, whatever. Um, and so I'm like, in my head, I have this, you know, thing in my brain that's like, you have to pee, you have to pee. And I'm sitting down after having sex and I can't pee. This is feeling so anxious, and I'm feeling this amount of pressure on my pelvis, it's not normal, to the point where it's like making me lightheaded, making me nauseous, you know, extreme levels of pain. And I had like probably four or five episodes like that where I wasn't able to go to the bathroom, but I was so overwhelmed with pain that I didn't know what to do because it was either I was gonna have to deal with the pain now and push my body and try and go to the bathroom, or I would, you know, uh wait for UTI tomorrow.

SPEAKER_01 20:42

Okay.

SPEAKER_03 20:42

Right? So it was like which w what worse, you know, worst of the two evils.

SPEAKER_00 20:48

Um neither are good.

SPEAKER_03 20:50

Neither are good. For my nervous system, for my body, none of it, right? Absolutely. And then you have this association, you know, your embodied association with any sexual activity becomes pain, right? And then that can create such complicated dynamics in your relationship with your body and your relationships with other people.

SPEAKER_00 21:09

Absolutely, because it becomes that cause and effect, like it's like you have the anxiety leading up to the event, and then that amplifies the pain, and it's just a nasty cycle back and forth.

SPEAKER_03 21:19

Yeah. So, as you know, that was kind of like just about eight to ten months into taking testosterone as well. So I was experiencing a second puberty of some sorts, right? And what is typically associated with male puberty is you know, increased sex drive. And I was definitely experiencing that for the first time in my life. I was like, Oh my god, wait, there are people walking around with sex drives? I had no idea. Are you guys serious? Other people in my life were like, Oh yeah, you're like a literally, everyone's like, What is going on with him? you know, but it was. It was a very eye-opening experience for me because I realized that there was a you know a connection with my body and my sexuality that was I was able to access with this new level of kind of gender affirmation and gender euphoria and hormones. And it was really challenging because it felt like my body was doing something very different from what I was feeling.

SPEAKER_00 22:26

You know, you're having pain but also having this increased sex drive at the same time.

SPEAKER_03 22:30

Yes, and you know, having an increased sex drive, but having a decrease in lubrication naturally, and feeling like, what am I supposed to do with this? Right. You know? Um, you know, also anatomical changes in genitalia happen around that period of time, the first few months especially. So there's so much happening to my that, you know, that part of your body for folks who experience, you know, um who go on testosterone, it can be a big transformation, of course, socially, physically, culturally, emotionally. Um, and so it's really intense. And on top of that, I also had a surgery, an endometriosis surgery, and uh and throwing everything into the mix.

SPEAKER_00 23:12

And we didn't talk about what specifically did they do for surgery for you.

SPEAKER_03 23:16

Yes. So I had an ablation surgery. Um you explained just a little bit about what that entails. Yes. So from my understanding, an ablation surgery is different from an excision surgery. Both are laparoscopic. Um, you know, they go in through your belly button and the sides of your pelvis.

SPEAKER_01 23:34

Yep, little scopes.

SPEAKER_03 23:36

Yes, little scopes. Um, and they explore your pelvis to see if there are endometrial lesions. Um, and with ablation, they laser off the excisions or the they laser off the lesions.

SPEAKER_00 23:53

Yes.

SPEAKER_03 23:53

And with excision, they remove them completely.

SPEAKER_00 23:56

Yeah, they kind of get the root out of there, is a big difference.

SPEAKER_03 23:59

Yeah. So at the time that I was looking for a surgeon, um I came to an understanding that excision was the gold standard for endometriosis surgery, um, specifically because it has reduced rates of regrowth and there are some issues and more complications with the laser method, essentially. Um so I was going to my doctor's appointment with this surgeon with this initial consultation, and I was bringing up the topic, okay, are are you an excession uh excision specialist? Granted, I had already asked, I had emailed and asked ahead, are you an excision specialist? My understanding is that it's the gold standard. Um, no response. But they responded to other parts of my email. I was like, hmm.

SPEAKER_00 24:56

Question mark.

SPEAKER_03 24:56

Yeah. Um I get there and um basically say exactly that. And she said, you know, um there's a big misunderstanding about what is the gold standard, and um ablasion is is just as effective at, you know, reducing endometriosis as excision is. And I said, Okay, well, do you do excision? And she said, Yes, I do, but only on bigger lesions. And at that point, I think I was in a place where I was so desperate for care and for a diagnosis and with instability of my health insurance. I said, you know what? Okay, fine. I brought it up to my mom. I'm feeling a little nervous, I don't I don't know, because I know ablasion isn't always the best fit long term for reducing regrowth and whatever. And she said, Listen, I think we just if you don't want to do it, I completely understand, but I think we have to go with what we have. Like, this is the only surgeon that is gonna be able to see you in the next few months, and this might be the only chance for you to get a diagnosis in a year, and so I made that decision to go with the surgeon, the surgeon. Um, and you know, I think it was the right decision for me at the time. I think unfortunately, because of the healing, the IUD issue that I had after healing from the surgery, it took my my body was in fight in flight for a very long time after the surgery, and healing didn't actually start until like eight to ten months.

SPEAKER_00 26:37

Sure, you had to get that neurosystem like your neuro neurological system to neurological system to downregulate in order to finally be able to heal.

SPEAKER_03 26:46

Yeah. Because like I was talking about before, you know, I was starting to associate this part of my body with pain, and like it almost felt like there were consequences to my sexuality. Sure. And that is a horrible feeling to have. It's a horrible feeling to anyone for anyone to have, but of course it holds more weight for queer and trans people who already are made to feel constantly like their sexuality is a problem, and constantly like their bodies aren't permitted to have pleasure. So it it's interesting for me because I think a lot of the conversations I have with you know with people in general about my gender and um endometriosis, for me, the experience that I've had is so interconnected because these parts of my body, like that are very gendered, have you know, imposed gender identity onto sexual organs, have always caused me physical pain. And so they've always caused me psychological pain too, and distress and anxiety and depression. So it's really indistinguishable to me. You know, I've always had issues with body image and specifically around my pelvis, around my lower stomach. Meanwhile, I have been told, you know, maybe you have body dysphoria, uh bat body dysmorphia. Um, but what I wasn't able to communicate or understand was that other people's waist sizes didn't change by four inches in a day because of the bloating that they were experiencing. So there's all of these kinds of, you know, imposed meanings on on what my body was, what was happening to my body and what my body was doing. Um and it's really hard because oftentimes I think there are a lot of narratives around trans people and our bodies, around how you found, you know, found yourself and how you connect to trans identity, um, and and how you feel about, you know, certain parts of your body. And I think that it is oftentimes for folks who are disabled, and especially for folks who have uteruses and endometriosis, it is a very complicated relationship to your body. Um I feel very lucky that I'm surrounded by a lot of amazing queer and trans people and a lot of folks who have chronic pain and endometriosis because they understand that our experience of embodiment is just going to be so different than the average person for more than one reason, you know?

SPEAKER_00 29:23

And that's wonderful to give that support. Yeah. But also makes me frustrated that there you're you're basically stating that you have you're one of a number of people in your direct community that is suffering from this, and I'm sure that everyone is feeling like there's so many limitations on care and how to access appropriate care for your community.

SPEAKER_03 29:48

Yeah. It is a very vulnerable time, and I think I am very privileged in the way that I have experienced access to care because of my whiteness and because of my wealth privilege and my family who is very supportive of me. Um, and most people don't have those things, you know, and so I think that the fact that I am having such intense barriers to accessing care, and I'm a very privileged person, is very much so evident of what the average person is dealing with.

SPEAKER_00 30:26

Right. And how many hoops you're having to jump through. Yeah, yeah, and how psychologically difficult that must be.

SPEAKER_03 30:32

Yeah, I think I think that for anyone, it's hard to ask for help.

SPEAKER_00 30:39

Absolutely. Especially when it has to do with like this part of our body, which a lot of us have la been, you know, grown up with that this is a shameful fan area, anyways, regardless of where you are. Yeah.

SPEAKER_03 30:51

Yeah, there's so much stigma and and kind of taboo around pelvic health in general, and that only gets complicated for trans people who also have, you know, historically been used for, you know, medical experimentation and um been categorized as mentally ill and all of those kinds of things. So our history in in the way that we work in care spaces or are are received in care spaces is so uh violent. And and that exists, you know, regardless of our knowledge of history. I think I have like I did a gender studies degree, and and so I have a very strong understanding of like how these systems of power have functioned for queer and trans people. Um, but it's very evident just walking into any given medical space, um, you know, it can be really activating for folks to have to show their medical their license, their driver's license to a medical professional or receptionist that might not have their um gender or their name matching the expression that they have chosen. So it can be like that in itself is a barrier to many people accessing care. Is I don't feel like I'm going to be seen. I feel like I'm going to be doubted whether or not I'm actually the person receiving health care. Um, I'm gonna be doubted in my legitimacy of my experience of my body because of that.

SPEAKER_00 32:33

And I can imagine that that really does start at reception, like even in the waiting room, pulling out paperwork, that that could be a very difficult experience if you've got if people are looking at you going like, Why are you here?

SPEAKER_03 32:45

Yeah.

SPEAKER_00 32:46

I can imagine that being very challenging.

SPEAKER_03 32:48

Yeah. Yeah, it is. And I think um I think um a lot of gynecological spaces are not used to having visibly queer and trans people there. Um, because a lot of queer and trans people have restricted themselves from getting gynecological care. And um, you know, I always am hearing and seeing, you know, folks, trans folks specifically, elder trans folks, saying, please do not, you know, please do not forget to get your pap smear. It is so important. I know it can be really triggering, I know it can be really activating. It's a horrible experience, no one wants to get a pap smear. And it is so important to make sure that we are fully informed about our bodies and what is happening with them. But that requires a huge amount of emotional energy and a and a lot of vulnerability. Um and it's always a risk, you know? Entering those spaces that are supposed to be for care can always be a risk for for a lack of safety.

SPEAKER_00 33:55

And circling back to your own pain and the pain you're experiencing, I'm assuming that a gynecological exam, and please correct me if I'm wrong, is something that is actually pain-inducing for you.

SPEAKER_03 34:07

Yeah.

SPEAKER_00 34:07

Okay, so with the pelvic floor with physical therapy, you mentioned that earlier. What parts of that helped? And are you at the point where that has helped you be able to have penetration where it's more comfortable or get a pelvic floor exam where that is a more comfortable experience? I'm not saying perfect, but yeah, is it moving in the right direction?

SPEAKER_03 34:27

Yes, definitely.

SPEAKER_00 34:29

Could you share what parts of it, like of the two were like the most helpful?

SPEAKER_03 34:33

Yeah, so I I saw a pelvic floor physical therapist in Canada and I've seen you. Um and a lot of the foundations for the pelvic fluorophysical therapy that helped the most was um breath work and you know, muscle relaxation work. Um I think what my body has responded so consistently positively to that we've worked a lot on is um you know loosening the muscles that are connecting the pelvis around the hips, especially. I have had chronic hip tightness and pain for so long. Um and that has like the first few months of doing those stretches and activities consistently reduced my pain by like 40%. I mean it was like extremely drastic. Um the dilator training has also been a slow but steady improvement for you know for penetrative sex and pen penetration activities. Like it has definitely helped a lot. Um, and I'm noticing like yeah, my my pain around sexual activity has been reduced, which is amazing. Um, and a lot of that has just allowed me to reform those, you know, relationships in my brain around what sex and sexuality can be. And I think it it also took me being uh with someone who is not centering penetration in activity, someone who's like, if that causes you pain, we don't need to do that.

SPEAKER_00 36:16

In terms of a partner, yes, exactly.

SPEAKER_03 36:19

So having and and I think just like having someone else give that permission to me, I think it's uh it's something that I was like advocating for myself in that kind of sexual interaction is always gonna be challenging, it's always gonna have weight as someone with sexual trauma, but it also feels like something that I'm constantly working on, and it's also something that like being really open with you about has helped me to kind of like lower the level of intensity around those conversations because I have more clear language around how I want to achieve certain goals of you know performing certain certain sexual activities and things like that. I know what it what my body might need in order to make that an accessible thing for me. Um and yeah, like dilator training and and kind of like progressive muscle relaxation activities with that has been super helpful. Um I think that pelvic floral physical therapy is something that should be accessible for everyone, regardless of gender identity or sex. Um I just think that it's so important, and a lot of us have tension and trauma in these parts of our bodies, and it's important to have pelvic floral physical therapists who are also trauma sensitive and have an understanding of you know how different identities might experience pelvic pain, and that you know that that might be impacted by their experience.

SPEAKER_00 37:54

So please tell me what you think that we as providers be doing better. We can always improve, and we do, I think, as a group try to improve. But what are some things from your perspective that we could be doing better to support your community?

SPEAKER_03 38:09

I think that, like we were kind of talking about earlier, you know, making sure that the experience at from reception to follow-up is inclusive and welcoming for queer and trans folks. So in any paperwork that might be, you know, people might be filling in online or in person, making sure that there's room for legal name and chosen name, and um legal gender and gender expression or gender identity and pronouns. I mean, I think like those are some of the most basic things that you can do that will signal to trans folks and gender non-conforming folks that they are welcome here in their wholeness, in their fullness. Um and also, you know, like not just using the paperwork as a as a whatever, like not just having paperwork and having it be there. Actually just acknowledging, oh yeah, I saw that you wrote in your paperwork, your chosen name is, you know, Charlie. Thank you so much for sharing. Um is there anything else you would like to share with me about you that you think might be helpful for me to know about your health? And I think like just opening the door to that conversation is super helpful. Um being open to not getting it right 100% of the time, and being open to trans people bringing in their experience and things that they've heard through word of mouth in their community because we know that you know cis women are having issues being represented accurately in medical data and medical science. Um, and that applies even more so to trans and intersex and gender non-conforming folks. So choosing to welcome in their word and their lived experience as really important data and information for how you're gonna support them is gonna be key to not only building a sense of trust, but actually giving them the care that they need. Um yeah.

SPEAKER_00 40:24

Thank you.

SPEAKER_03 40:25

Yeah.

SPEAKER_00 40:25

No, I I love that. I think it's just just knowing that it's something even, I mean, honestly, like to me that sounds so simple. Yeah, but that something so simple could be signaling safety and trust and like a kind of a an open relationship that could be starting. Yeah. So I think that and I think that's something that we can all do very, very easily. It should not be a hard shouldn't be hard. Yeah, of course. So let's talk for just a minute, let's talk about a few myth busting things. Yeah, it is endometriosis awareness month.

SPEAKER_01 40:56

Yes.

SPEAKER_00 40:57

So let's talk about two myths about endometriosis with a trans man.

SPEAKER_03 41:04

Yeah. So one of the big things that I think people misunderstand or kind of tend to assume about trans men specifically or trans masculine folk is that we all want to or do remove our uteruses. That is not the case for everyone. It is the case for some people. Some people have dysphoria around their uterus and their menstrual cycle and don't want to carry children. Some people do want to have their menstrual cycle and carry children. I'm one of the people who wants to keep my uterus and and wants to carry children, and so that has been something that I've come up against a lot is doctors saying, you know, um, well, have you considered a hysterectomy? And I said, No, I haven't considered hysterectomy because I'm planning on having children and preserving my eggs. Um so that's a myth number one.

SPEAKER_00 41:56

And that's so valid that you want to have that experience or preserve the the option for, but also knowing that like a hysterectomy is not a resolution for endometriosis, anyways. Yes, right? So like you having your uterus and ovaries taken out doesn't mean it's gonna stop the endometrium in the beginning. So having that assumption, just knowing that it no one not everyone wants it, and it's not gonna be cured of anything that exactly there's better options, yes.

SPEAKER_03 42:23

Endometriosis can grow on any organ in the body, it has been found on every single organ. So remember. Um what's number two? Number two is that um not all you know, taking testosterone also does not prevent you from growing endometrial lesions. It doesn't stop you, it doesn't treat it. Um you know, I've experienced this as medical professionals myself, saying, Oh, your period stopped and you are no longer going to be, you know, you're no longer gonna have endometriosis. Just for them to follow up and say, hey, oh, you know what? I messed up. That was a big misunderstanding. And that's another thing. If you're a medical hair medical professional and you realize that you've said something that was misinformed, it's okay, it happens, but be accountable to it, look up the research, get insight from specialists, and make sure that you bring that information to your patients so that they are good advocates for themselves as well.

SPEAKER_00 43:21

I think it's really important. So, kind of that leads me perfectly into like the last thing I want to ask you, which is how can patients better self-advocate for themselves? How can someone be coming into an office better self-advocating? What are some things that have worked well for you that you'd like to share?

SPEAKER_03 43:37

Yeah, well, I mean, this is something that I've learned from from other trans people and just from my own experience, having someone else there is really, really helpful. Um it is also really helpful to have someone there who, especially if you're going into gynecological spaces, having someone who is a cis woman. Because it might help make you feel more comfortable being in the reception room.

SPEAKER_01 44:04

Okay.

SPEAKER_03 44:05

Um there's less question marks. You look like a helpful boyfriend if people are assuming that you're cis, which whatever, I am a helpful boyfriend, but I also need to go to the gynecologist.

SPEAKER_01 44:18

We just are going together.

SPEAKER_03 44:19

Exactly. Um yeah, uh, I think that's that that bringing a buddy and also it might be helpful if you are a trans mass person and you have a cis woman in your life, or even a femme more femme presenting, you know, non-binary person in your life who feels comfortable um showing up for you, being there, and also just consider like going into these appointments might be activating for you. So making a plan for how you're gonna take care of yourself before, during, and after those appointments. Um and writing everything down for me is really, really helpful. It's also helpful to go into these appointments with questions. Um, and there are a lot of resources out there that are specifically for trans folks looking for healthcare that is gender-affirming. So, you know, it might not be for receiving gender-affirming care, but there are gynecologists who have, you know, and and public floor physical therapists who have done training to ensure that their practices are inclusive and welcoming to trans and intersex folks. So look for the resources, they are out there. Um, and if they don't exist, contact your local queer and trans organization because it's worth, it's worth, you know, letting them know that that that resource is something that you need.

SPEAKER_00 45:42

Um let's make sure we we share some of that and we can kind of compile this and we'll put that in the show notes so that that way with this episode it's just incredibly accessible so people can see it right there. And then it just hopefully we'll take away one less barrier, things people have to do. If they're watching this just right in front of them. Yes. Perfect. Well, gosh, thank you so much for being here. I love having you. And I know we're gonna come back, and you're gonna come back, we're gonna talk more about the perimenopause menopausal experience, which I think will is a really great kind of other needed conversation this space.

SPEAKER_03 46:18

Yeah.

SPEAKER_00 46:18

So thank you for sharing so much of yourself with us.

SPEAKER_03 46:21

It's been such a pleasure, as always.

SPEAKER_00 46:24

Thank you so much. I want to thank you again for coming and sharing so much of your experience with us this month. It's so special to have you, especially with Endometriosis Awareness Month. So thank you for sharing your lived experience with us and really promoting that with me today.

SPEAKER_03 46:38

Of course, thank you. Thanks for having me and for making a space that I feel welcome to be open in and chat about it.

SPEAKER_00 46:45

Always. Like the doors always open for you. So we'll see you soon for another episode. And up until that point, I just want to thank all of you for being here for this conversation today and joining us for another week of Menopause Unscripted. If you enjoy this conversation today with Charlie, please follow, like, and subscribe with all of our channels. You can find us everywhere you love to follow your podcasts, and we'll see you next week. Now I have to end with the boring stuff. While I am a doctor, I am not your doctor. This podcast is for entertainment and educational purposes only. If something in today's episode resonated with you, please bring this to your own healthcare team and self advocate. You always are promoting that. I cannot wait for you to join me on next week's episode of Metapause Unscripted for another hot topic.