UterX Episode One - Transcript
UterX Episode One (project page)
Content Warning: discussion of suicide and transphobia
Description: 2016 MedX Student Advisor, ePatient Delegate, and In Sickness + In Health Junior Uterus Correspondent, Charlie Blotner, joins Cara to discuss issues related to accessing gynecological healthcare for transmasculine individuals. They talk about coverage exclusions for transition-related care, gynecological cancer rates, and the exclusionary nature of the gendered language of reproductive health issues.
Guest: Charlie Blotner
Charlie: So, not everyone who is trans is trans within the binary. So some people might identify female-to-male, a trans man, some people might just identify as trans* so not with the gender they were assigned at birth. Some people might identify as transmasculine. Some people might identify as trans non-binary. There’s no set way to be trans.
[cut to intro]
Hey there, and welcome to Sickness + In Health. My name is Cara Gael. I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more. This episode is part one of UterX, a multimedia project produced in collaboration with Ask Me About My Uterus for the 2016 Stanford Medicine X ePatient Storyteller Track.
In these UterX episodes, I'll be talking to In Sickness + In Health Junior and Senior Uterus Correspondents, Charlier Blotter and Abby M. Norman, about broadening the conversation around gynecological healthcare to include more than just “lady problems.”
If you’re new to In Sickness + In Health, welcome! This is a podcast where I talk to people about their relationships with their bodies and issues at the intersections with chronic illness, disability, healthcare, and mortality. I usually make the following disclaimer at the beginning of every episode:
Nothing said on this show should ever be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.
While that disclaimer doesn’t apply directly to what we’re talking about in the UterX episodes, much of the same can be said about gender. Like Charlie was talking about in the clip at the top of the show, everyone’s experience of their gender is different, and there’s no “right” way to be who you are.
In this episode Charlie and I discuss issues related to accessing gynecological healthcare for transmasculine individuals. We talk about coverage exclusions for transition-related care, gynecological cancer rates, and the exclusionary nature of the gendered language surrounding reproductive health issues.
If you’re interested in hearing more about accessing healthcare as a transmasculine person with chronic health issues, you can go back and listen to episode 27 of the podcast. Among other things, I talked to S. Leigh Thompson about the hurdles to diagnosis he’s faced as a trans person with complex health issues, and healthcare insecurity.
In addition to being an ePatient Delegate on the Storyteller Track and Junior Uterus Correspondent for In Sickness + In Health, Charlie is a 2016 MedX Student Advisor, co-moderator of the brain tumor social media Twitter chats, and a Cure Forward precision medicine team member.
You can find resources and more from us in the show notes and on the project page at insicknesspod.com/UterX. Follow In Sickness + In Health on social media @insicknesspod, and keep up with the podcast by subscribing to us on iTunes, Stitcher, Soundcloud or wherever you get your podcasts. If you can, please take a moment to rate and review the podcast on iTunes, it helps other people find the show!
We recorded this conversation back in July when it was still too hot to record without the air conditioner on, so sorry about the audio quality on this. There’s also a few things we talked about that didn’t make it into the episode, and so many more things we didn’t get a chance to talk about at all. So when we got a chance to meet up in Palo Alto before the official start of MedX, we wanted to record a little more about that...
[cut to update clip]
What we didn't talk about in the episode; realization of masc privilege upon listening back
healthcare for trans women
STI rates, HIV rate 4x national average
the economics of transitioning
The Art of Trans Bodies photo project
Where can people find you?
“We hope you enjoy this episode”
[cut to interview]
Charlie: Something that I was thinking about when I was looking at the photos too was that you know obviously people are choosing to share the types of photos that they’re sharing, but some people are looking at the camera straight on, some people have their backs turned, some people are covering up certain parts of their bodies, and so when I saw that I kind of started to think about the different gender affirming surgeries, who has access to those and who doesn’t. And when we start to think about that, they’re still predominantly not covered by insurance companies, these surgeries, and providers still aren’t categorically required to cover transition related care so that included hormones, you know, mental health services, especially not gender affirming surgeries.
Cara: Yeah, yeah. And a lot of people think that the Affordable Care Act made that illegal, which it’s like a gray area, not totally true. Based on the Affordable Care Act healthcare providers cannot deny trans people appropriate preventative care but providers are not required to cover the transition related stuff, which includes hormone therapy, mental health services, and gender affirming surgeries. Which is just, bananas! I mean, the whole mental health care thing and like getting covered or not covered by insurance is a whole separate can of worms but the fact that mental health services for trans people are not part of preventative care is ridiculous. Because there is so much social - I said I wasn’t gonna swear, but like social bullshit - that like, I mean everyone needs mental healthcare services and you know dealing with transition either before, during, or after there’s a lot of mental health stuff. There’s very new research, because obviously this is a subject that hasn’t gotten a lot of funding or attention previously, but newer research is showing that trans kids that have their gender affirmed from a young age have the same or similar mental health outcomes as cisgender kids.
Cara: But, because so many trans people have to deal with transphobia, and transphobic violence, and you know just all sorts of stuff throughout their lifetime - and a lot of that is internalized - that can cause a lot of serious mental health issues. Including a suicide rate that I think is four times higher than the general population? That might be an incorrect statistic.
I really dropped the ball on the statistics here, which if you’re a regular listener to the show I’m sure is no surprise. I never get the numbers right!
According to a report from The Williams Institute and the American Foundation for Suicide Prevention about the Findings of the National Transgender Discrimination Survey, 41 percent of trans or gender nonconforming respondents have attempted suicide. Compare that with 4.6 percent of the overall population who self-reported a suicide attempt. Trans men are the most impacted, with 46 percent reporting an attempt in their lifetime. Trans women reported a rate of 42 percent. [maybe something about trans women being more affected by transphobic violence?]
These rates also vary by race and ethnicity. More than half of all American Indian and Alaska Native respondents have attempted to take their own lives, with black and Latinx trans communities close behind at 45 percent and 44 percent respectively. Asian, Pacific Islander, and white respondents--who had the lowest rates--self-reported suicide attempts at a rate that was still almost nine times higher than the national average.
You can find a link to this report, called Suicide Attempts among Transgender and Gender Non-Conforming Adults, in the show notes.If you are currently in crisis or know someone who is, please contact the Trans Lifeline at (877) 565-8860 or the National Suicide Prevention Lifeline at 1-800-273-8255.
[cut back to interview]
Charlie: And so, think about it. If your kid is trans or you’re trans, you have essentially a, you know, one in two chance of attempting suicide in your lifetime. I don’t like those odds, you know.
Charlie: Not for me, not for anyone.
Cara: Those are not good odds.
Charlie: So if healthcare, you know, if getting access to healthcare can do something to change that then..
Cara: Well, yeah. Last March, I think March 2015 a transman in Minnesota won a victory in Federal courts that determined that healthcare providers and hospitals accepting Federal Medicare and Medicaid funds are subject to the Affordable Care Act’s prohibition of discrimination based on sex, which extends to trans individuals. So that really sets an important precedent. Unfortunately, a lot of states do currently enforce exclusions in Medicaid or Medicare for trans related care, but in September, the Federal government actually proposed rules - which have not yet been implemented
Charlie: *laughs softly*
Cara: that would also ban such exclusions in nearly all plans nationwide. Now, given how the Affordable Care Act saga has played out, you know
Charlie: *chuckles quietly*
Cara: The Federal government could certainly propose something and then have it turn out quite different.
Charlie: We also have to think about, you know, navigating health insurance in the context of if a trans person has their gender marker changed, or not.
Charlie: Because that kind of creates a whole other whirlwind. So if someone was assigned female at birth and so they had the gender marker F on their license and they had it legally changed to the marker M for male, then that person is no longer eligible to have their gynecological care covered by their insurance. The reason being that on paper, an insurance company would reject the claim that a cisgender male would need gynecological care, but transmen do,
Cara: Right. Yeah. Well again, thanks to the Affordable Care Act this is kind of a double edged sword and this sort of links in with the gendered wording regarding gynecological care
Cara: And it being a “women’s issue” that under the Affordable Care Act all insurance plans must cover a “well woman visit”
Cara: Which is your yearly gynecological exam. And I have issues with that term for a number of reasons. Even I, as a cisgender woman, am not a “well woman” by any circumstances.
Both Cara and Charlie: *Laugh together*
Cara: And even under those circumstances those visits don’t extend to trans women either.
Cara: So that’s a whole mess. And that’s based on semantics alone, you know?
Cara: I mean, insurance companies will use any excuse to deny care.
Cara: So receiving gynecological care for a lot of transmasculine people can be something that’s really emotionally fraught, right?
Charlie: Yeah, and so a lot of times, if you picture the typical waiting room for a gynecological care center you would probably picture cis women filling up the waiting room, right?
Charlie: So as a transmasculine person even just going there, even just walking in the waiting room is a super daunting task because you’re surrounded by all these women who turn to you and see you there and think why are you here? You must be in the wrong place, or you’re here with your partner, or your mom, or your sister or whatever. And so you feel really out of place to begin with and it’s a super uncomfortable exam obviously as well. But I think that some of the things that I’ve come to find to be helpful tips along the way in terms of these appointments is to kind of set the expectations for gendered wording and the correct pronouns with your care provider from the beginning.
Cara: Before the pants come off.
Charlie: Yeah, before the pants come off. Because it’s not going to be a great appointment for you regardless, but if you can kind of feel - if there’s anything that’s going to make you feel a little bit better, it’s at least being addressed the correct way. And then just kind of being asked to verbally be walked through the procedure before it happens so you know what to expect, that way it’s not like oh my gosh what’s happening?! And this huge panic.
Cara: Which to be honest, regardless of how you identify, that would be nice for a gynecologist to do for anyone before they stick their hand up there.
Charlie: Yeah, yeah. And you know, bringing along a support person which is great for any doctor’s appointment.
Charlie: They can act as a backup if you need someone to help with the pronouns or just to be there with you to help debrief on what just happened afterwards. You know, because you might feel like you’re in an extra state of vulnerability but one of the big things about these appointments is really just going. That’s a really big thing within the transmasculine community. Is just making these appointments. Once people start taking testosterone they have an increased risk of endometrial hyperplasia, thus from that endometrial cancer, and then as well as well as ovarian cancer too. So it’s typically recommended within the first five years or so of someone starting testosterone that they go and have a hysterectomy or an oophorectomy - and - sorry, the two of them.
Cara: Which is, hysterectomy is removing the uterus. Oophorectomy is removing the ovaries. Sometimes it’s just one or the other, sometimes it’s both. There’s a lot of different kinds of hysterectomies that you could get.
Charlie: Got the medical dictionary here! And so although ovarian cancer only accounts for about 4% of all diagnosed cancers in people who are assigned female at birth, it’s actually the 4th leading cause of cancer related death for people with ovaries. But if it’s caught early, the 5-year survival rate for ovarian cancer is 90% - so it’s a great survival rate. But 75% of the ovarian cancer diagnoses for transmasculine people are made in advanced stages when the survival rate is really low, and so just going in and having that appointment is huge.
Cara: Yeah, in episode 27 I talked to Leigh about his experience as a trans person in the healthcare system and he talked kind of at length about why a lot of trans individuals wind up trying to avoid medical care altogether which can definitely set you up for not having those preventative screenings that can catch things before they become a really big problem. Gynecological care is kind of a uniquely uncomfortable and fraught specialty so it’s kind of like even worse in those circumstances.
Charlie: Definitely. But, there are a lot of things from the healthcare provider end that providers can do to make the appointment a lot better. From the start, it’s always nice when there are LGBT who are working at the office and obviously that’s not something that’s always visible for a patient to know or see, but that really reduces the anxiety of seeing a doctor who we don’t know if they’re homophobic or transphobic, because we already know that they’re accepting. So that’s just kind of one anxiety level to be gone already, but the other thing is kind of just knowing that trans people don’t always using the same language to describe our body parts that other people might, so just kind of asking you know, what language do you want me to use, or how do you want me to talk about these different things, definitely respecting names and pronouns, but also making a point that staff is educated about the LGBT community so that there are educational seminars available for the office staff to learn more about gynecological care care for transmasculine people. And something that I haven’t been able to find much about is having a radiology department contact that does both pre top surgery mammograms and post top surgery mammograms. That’s always nice to be able to have a referral so that trans people know there’s a center to go to for that.
Cara: Right, because you don’t need to have breasts to have breast cancer. Which is just a total bummer.
Charlie: *laughs in response* Very true.
Cara: Planned Parenthood actually is the single largest provider of trans healthcare in the United States. Not every location offers trans services but you can go online and see which locations do, and I obviously do not utilize those services but I have heard from others that it’s actually one of the best healthcare experiences that they’ve had as a trans person. As a cis woman, Planned Parenthood has also been some of the healthcare that I’ve experienced. So even you know if you live in an area where you can’t necessarily find a doctor or a gynecologist who is trans friendly or at least not transphobic or transhostile.
Charlie: *laughs* Transhostile - so true!
Cara: Yeah. Planned Parenthood can but not always be a good place to start as far as trying to find a provider who is more sensitive to these issues.
Charlie: Definitely. And I think the fact that they show and they list online which offices have what services available is really nice so that we as patients can go as see. And for those of us who may be a little bit more shy or less likely to go in-person or to call and ask about certain services it’s really nice to have it all listed out and ready to go.
Cara: Yeah, and you can request appointments online too, which is great. Because I’m one of those people who has so much anxiety about making phone calls. If you have your gender marker legally changed on your driver’s license do you then also have to change it on your health insurance or can you wait a while? Or do you know how that works?
Charlie: I personally don’t know the legalities of that, so I would not be the person to ask about that. I would go look on Lambda Legal’s website.
Charlie: So what’s interesting here in Arizona is that I know someone who went to the DMV to have his license updated and you know he’s been taking testosterone for a while so his facial features have changed, he’s read as male, but he chose to not change his gender marker for health insurance purpose. But, they changed his gender marker on his licence to male because they read him as male even though he checked off the female box. And so then because of that now he has to deal with a bunch of things like signing up for the draft and all sorts of other issues.
Cara: Oh no. God. I didn’t even think about that. That’s horrifying.
Charlie: And with all of the trans military stuff that has just been passed I was reading the latest update on that and if you were assigned female at birth but transitioned to male you are not required to sign up for the draft, but if you were assigned male at birth and transitioned to female you still do have to sign up for the draft. So, interesting.
Cara: Interesting indeed. Interesting indeed. I’ll leave it at that. Now, on a state-to-state basis, are you able to legally change your gender in every state? On your driver’s license? Because I feel like that’s sort of a state-to-state thing.
Charlie: I know that birth certificates vary state-to-state and that’s not something that I really looked into a whole lot because I know that I’m not going to change my gender marker. I know that there a couple of states where you cannot change - they will not let you.
Charlie: One might be in Ohio, and another in the South. But, most of the other ones you have to have a letter from a surgeon, like after you’ve had top surgery or something like that, that says this person has had an irreversible gender changing procedure.
Cara: Right. Interesting. And I think Oregon is the only one where you can actually change your gender to non-binary.
Charlie: Yeah! I saw that recently! Not everyone who is trans is trans within the binary. So some people might identify female-to-male, a trans man, some people might just identify as trans* so not with the gender they were assigned at birth. Some people might identify as transmasculine. Some people might identify as trans non-binary. There’s no set way to be trans.
Cara: Right, and not everyone who is trans wants to get surgery, or take hormones, right?
Charlie: Yeah. Also don’t have the language for being trans or what trans even means until later in life, or they don’t have the safety to come out as trans. So there are a whole variety of reasons around that. Or they don’t have access to the health resources to medically transition. Some people just socially transition. Some people medically and socially transition. Some people might have surgery and not take hormones, some people might take hormones and not have surgery. And there are a variety of different ways to take hormones, too. I would guess that the most common way of taking hormones would be through intramuscular injection. But, there’s also Androgel which is a cream form that you would rub on, there’s also Testopel which are these little pellets that are implanted under your skin and last for 3-4 months. Each of them, they all kind of have the same side effects of the deepening of the voice, the facial hair, and the more masculinized fat redistribution, and acne *laughs*, but they might have the side effects come on at a different pace. There are also mood swings that come with each of the different forms.
Cara: And hot flashes I’m sure. Because I mean it’s not a direct comparison but a sudden change in your body’s estrogen levels can kind of mimic your body when somebody goes through menopause.
Charlie: Yeah, and not everyone takes the full recommended dose, too. Some people take low dose hormones because they don’t want as full and as fast of a change, so that’s something that I think not everyone realizes. A lot of people think that change will happen overnight and so there’s a lot of documentation of the transition process on Instagram for sure.
Cara: And that’s great. Because you can’t be what you can’t see. And i think a lot of people who maybe never had any sort of introduction to the trans community sort of think oh my god it’s like an epidemic! All of the sudden there’s like all of these trans people! When you’ve been here all along and some of them didn’t feel safe to be out and some of them didn’t know until they saw themselves in something else. People who are taking estrogen, they generally also take the hormone blocker, right?
Charlie: I believe so.
Cara: And so if you’re taking testosterone you don’t also need that additional blocker?
Charlie: Correct. But if you were a younger kid, like if you were in elementary or middle school and were transitioning you might just socially transition because at that young of an age you’re not going to be taking hormones, but your endocrinologist or doctor might have you on a hormone blocker. That way it essentially prevents your first puberty so that you’ll only be going through the puberty of the gender that you identify with so that would actually prevent the need for surgery later down the line. So let's say you were assigned female at birth but identify as a boy and you’re 11-years-old and your doctor can start to see that you are just starting to go through puberty, your doctor can put you on hormone blockers so that you don’t go through female puberty. That way your chest never grows, and you never have to have top surgery, and you will eventually start testosterone.
Cara: Right, once you’re older. And this is still highly controversial in some circles. I don’t know if you have anything to say about that?
Charlie: It’s tough, I mean everyone knows and can verbalize that they’re trans at a different age. So we have some people who you know, knew as young as two started saying I am a boy, I’m a boy, or I’m a girl, I’m a girl - whatever. And some people don’t realize they’re trans until they’re much older and in their 20s, and everyone realizes at a different age and I don’t think that we can stick to just one narrative and just one way of looking at things because every person is so different. And I think if we only stick with the narrative of ‘only people who are real trans people knew when they were little’ then that’s really dangerous to other people. And I also think that when people say that oh, these kids are too young to know, if you think about it, when you were 7-years-old, you knew if you were a boy or a girl, you know, if you were saying that you weren’t and otherwise you knew what you were saying. But everyone is different and everyone knows themselves in a different way, so who am I to say that someone isn’t telling the truth.
Cara: Right, or that they can’t possibly know. That’s a great answer. The point that you made about having more than just a single trans narrative is so important, because the dominant narrative at least in this point in time is so much about being trapped in the wrong body.
Cara: And I know several trans people who don’t feel that way.
Cara: And have never felt that way, and I know several people who do. And I’ve gotten to see different trans narratives in my own life and how variable they can be and you know when I put it in this perspective it just seems so absurd that there would be just one narrative or anything in general, you know? We always want to simplify things and say this is the deal with this thing.
Charlie: Definitely. People come out at any age, and people come out when it feels safe enough to do so and when they have time to do so. And so we can’t trust one narrative. We have to believe people when they tell us. I think if we had more healthcare providers who were a little bit more educated about LGBT health in general, then it wouldn’t be - then I think going to the doctor’s - wouldn’t be as much of an anxiety. I mean it still would be an anxiety, but we would be able to go with the knowledge that this provider already knows that I’m worried about these different things and they understand that even me just coming where is a really big deal. And they understand my community, and they are going to respect me for my name and my pronouns. That I don’t have to worry about you know, going here and being humiliated, that I can go here and be just like any other patient and any other person. And I think as much as the appointment is going to be uncomfortable, the human interaction side of it is what can neutralize it as much as possible.
Cara: Yeah, I would also like to see trans people included more in medical research of menstrual disorders. We just have not begun to even crack the surface on that. So I just hope that uterus related things get a whole lot more funding and attention in the years to come.
Charlie: You and Abby can tackle that in your next podcast.
Cara: Yeah, we’re workin’ on it, you know. I would also like to see, and I’m sure that this will happen, these things take time, but better language just for talking about uterus havers. Or just for people who used to have a uterus and don’t anymore.
Cara: Because part of the reason we do talk about it in such a gendered way and as a women’s issue is that it’s very cumbersome to say “people who have estrogen and progesterone and maybe they used to have a uterus but maybe they don’t, but they did.” I mean, should we even be talking about this stuff, generally? Is the lack of generalized terminology actually a blessing in disguise because it actually forces us to break down groups? Or are humans just inherently simplifying creatures so we generalize things to be able to talk about them.
Charlie: But I think that we could generalize it based off the world’s population that we are not recognizing.
Charlie: Because it’s not just simply a women’s issue. Like is it really that hard to say people with periods, or people who menstruate?
Cara: Which is what I usually do, however, that’s not exactly an accurate term either.
Cara: I mean it is if we’re talking about menstruation, but not everyone who has a uterus menstruates, and not everyone who has ovaries menstruates, and I’ve gone very far out of my way to not menstruate and have continued to menstruate despite all of my best efforts.
Charlie: *laughs* true. And then we have that trope of well women who can’t or don’t menstruate aren’t real women, and we just need to throw all of this out the window.
Cara: Yeah, basically everything we’ve accomplished so far, just light it on fire and throw it out the window. Do you see a lot of the terminology around reproductive health - I mean I kind of defaulted to reproductive health when speaking about these things as reproductive issues - because so much of the language we use to talk about these issues does alienate these groups. People who have fertility issues, people who don’t necessarily identify as women, people who have menstrual disorders, a lot of it is just not helpful and leaves me wondering: so who is being included in this?!
Charlie: *laughs* Is Everyone Included?
Cara: I know so many people with menstrual disorders, or fertility issues, or gender identity stuff that are alienated by this stuff that to me feels like we’re talking about this magical group of humans that menstruate as they’re supposed to and identify in a very specific way and can get pregnant as soon as they want to. A lot of our current language is failing.
Cara: So many of us.
Thanks for listening to this episode of In Sickness + In Health. UterX is a collaboration between In Sickness + In Health and Ask Me About My Uterus for the 2016 MedX ePatient Storyteller Track. There’s still more to come, including my episode with Abby M. Norman about some of the controversies surrounding inclusive gynecological healthcare for trans and gender nonconforming individuals. We’ll be talking about her MedX talk and the piece she’s writing about it for Ask Me About My Uterus.
Abby’s ePatient Ignite! talk will be at 2:20pm PST on 18 September in the Upper Lobby of the Li Ka Shing Center for Learning at Stanford University. If you can't make it to MedX this year, you can catch it on the livestream! Her episode for UterX will be up in a couple weeks.
Check out the project online at insicknesspod.com/UterX and at AskMeAboutMyUterus.com. There you can find resources including a glossary of terms and links to learn more about some of the stuff we talk about in this episode.
You can follow the podcast on social media @insicknesspod, and on Twitter find Charlie @CBlotner_, find Abby @abbymnorman, and find Ask Me About My Uterus @menstrualmaven.
And don’t forget to be excellent to yourselves and each other.
UterX is executive produced, directed, edited and hosted, by Cara Gael O’Regan—that’s me! Charlie Blotner and Abby M. Norman are associate producers. UterX was researched by Cara Gael O’Regan, Charlie Blotner, and Abby M. Norman. Charlie transcribed this interview, and the transcript is available on the episode page, at insicknesspod.com/UterX. Special thanks to Stanford Medicine X and Mark Freeman. Our music is by Vincent Tabulka.