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Lack of Research Into HRT and GAS in General and Especially HRT and GAS for Nonbinary/Nonconforming Outcomes


MayGay

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While research on the standard masculinizing and feminizing HRT and related subjects is sorely lacking, anything more specific than try to tailor HRT to nonbinary people's needs is virtually nonexistent.

 

And aside from microdosing and blockers only I can't find any published articles that have any other options. And there is literally nothing past a vague description of what will probably happen with no information as to how much or to what extent. Or anything on how to reach different goals.

 

HRT is currently my biggest concern, but there's also gender affirming surgeries that are more understood but also still very basic and in their infancy. They basically more or less using the same techniques as the standard surgeries but this leaves them limited to things like having to deal with limited space, materials, and an inability to do some things that I now know I'm not the only person who's asked for is either probably unsafe or just can't be done. And while surgeons are always working to perfect current techniques, as far as I can tell nothing is being done to address these shortcomings or develop new techniques that are more suited to nonbinary/nonconforming surgery outcomes.

 

Not only in the techniques for stuff like this, there's really not much information on what goals a lot of people who want nonbinary/nonconforming transitions or what outcomes they want Or even how many people may want nonbinary/nonconforming transitions.

 

What I have seen is some theoretical and DIY experimental forms of HRT being discussed in the nonbinary community, but no mention of it in any medical journal, not even theoretical, on paper research based on knowledge we already have. As an note I have not done an extensive search of this in the literature specifically as they are always intended to achieve an outcome other than my desired outcome, and often intended to prevent my desired outcome.

 

So, I am wondering how we can work to have research done on these subjects to better help people who have nonbinary/nonconforming transitions reach their desired outcomes. I've asked my doctor and endo about this but haven't got back yet. And I'm just a pleb on the internet and the best I could do is probably get minimal community involvement on what goals and outcomes people want.

 

How can we get the medical community at large more involved in properly researching all forms of transition and their mechanisms? And really, not just for nonbinary/nonconforming transitions but even the standard transmasc/transfem transitions because there isn't really anything for that past the extreme basics so far as I can find either. Dr. Will Powers is doing some clinical research on how to optimize femininizing HRT but it's experimental and the overall mechanisms behind transition are not understood, only the general outcome. And of course if we had a better understanding of the mechanisms then we could optimize and tailor everyone's transitions to their desired outcomes.

 

There is a lot of information on how the like AGAB puberties work and how hormones interact after that, and stuff like giving postmenopausal women HRT, estradiol and progesterone that many clinicians will reference. But nothing on trans people specifically. And many of the sources clinicians will cite regarding progesterone both seem to make conclusions that are different from the outcomes of people who take take it have, cite the articles on pre/peri/post menopausal cis women, are contradicted by that one study done by a clinician in Vancouver, or were conducted using older synthetic forms of progesterone that aren't micronized bioidentical progesterone. By micronized bioidentical progesterone I mean the hormone P4, not related progestins like depot medroxyprogesterone acetate aka Provera that are not progesterone. Basically, WPATH still using studies from people taking things like Provera and saying it's not recommended is the same as them saying it's not recommended to take the various forms of estradiol because various forms of synthetic estrogens that aren't E2 like diethylstilbestrol or conjugated estrogens would not only be ineffective, but also potentially harmful. In other words stuff like Provera and the long list of other birth control progestins that aren't P4 are going to be as ineffective as the very long list of estrogens used for birth control that aren't E1.

 

Moreover, we have little to no information on what role if any the other natural estrogens, androgens, and progestins other than E2, P4, and testosterone play in feminization and masculinization through HRT. The biggest example is estrone sulfate, E1S, which may have a role in femininization as proposed by Dr. Will Powers. There are other forms of these hormones and they are largely ignored for the purposes of HRT. The truth is that we don't know whether or not they have any role in transition or puberty.

 

Maybe some of this can finally put any argument against transfem people participating in women's sports other than transfem people are icky to rest. They never consider the effect of progesterone on bone density in cis women is something people refuse to even consider, only testosterone and estradiol.

 

Finally, I have had discussions with people who seem knowledgeable in these subjects. I don't always know their credentials but when I look to confirm the information they give me, it's always correct. But whenever I talk to them about it, they give their basic knowledge about how some things work and then say they have no idea about what the outcome of various forms of more experimental forms of HRT will be. They make predictions but again, we just don't know. And some of these may or may not be dangerous.

 

As an extra little note, I use nonbinary/nonconforming because I used to use nonbinary then someone came to me and said it doesn't need to be nonbinary because binary trans women can access it too. My surgeon uses nonconforming on her website, but to me my surgery is conforming to my nonbinary genders so it isn't nonconforming. Thus I use both.

 

So how can we prod the medical community to do more research on transitions as a whole? Like the whole thing.

Edited by VickySGV
Recommendation of unreviewed medical research.
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4 hours ago, MayGay said:

So, I am wondering how we can work to have research done on these subjects to better help people who have nonbinary/nonconforming transitions reach their desired outcomes. I've asked my doctor and endo about this but haven't got back yet. And I'm just a pleb on the internet and the best I could do is probably get minimal community involvement on what goals and outcomes people want.

 

Although not my field here at all my professional experience with medical research was that many professionals in limited fields tend to have  personal or otherwise direct interest in what they are researching (this is maybe automatic). For instance, more to my background, a good number of prominent figures in the provision of equipment for disability services have had a very close relationship with the subject, like a disabled close family member etc, and had strong reason to try to help with their problems.

 

This is perhaps less so with trans related issues (maybe?), but what you are wondering is related to a very small subset of the field. As such it may be that you youself, as you are partly doing here, may be one of few people doing any research. Are you in any position to advance this professionally, either now or in the future? From my experience, either rightly or wrongly, but I understand why, professional circles are somewhat 'closed shops' to someone without qualifications. You will need some background to readily influence scientific progress to any extent. This may not have to be paper qualifications but would need to show good experience in the field. If you get my meaning, in my opinion, a low application field is not mainstream enough for general work so unlikely to attract the interest of research.

 

Tracy

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Like I said I'm just a pleb on the internet. An unemployed disabled pleb to boot. Yeah I want to go into nursing to get my RN so I can advance things. But I don't even know if I'm going to be able to get in, actually manage to pass a semester let alone graduate, or if it's even a good idea to try. Suffice it to say that past attempts pretty much resulted in disaster for me. And I don't know if having the drive to do it is going to be enough. I'm also admittedly probably not suited for doing a lot of the research myself. I have an engineering mindset, and I can utilize knowledge we already have to figure out how to solve those problems if it's something I understand and am interested in or I really need to. And I could probably dig really deep into the literature in order to get the information to put something on paper assuming we know what all or most of the hormones actually do, but like that's very different from actually running experiments and recording data, running it through statistics and stuff. I'm legit bad at all of that. I'm not always as good at the actual solving of problems, only finding good ways to solve them. And forget involving me with literally anything to do with any sort of surgery even if I didn't have a phobia of surgery it would still be a really bad idea lol. And I have no leadership skills whatsoever.

 

I'd probably be best suited working as a consultant to other healthcare professionals on how to help others transition especially if unexpected things happen, or if the person wants a nonbinary transition which is why I want to go into nursing in the first place. And I could probably do like a small number of clients directly as well.

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6 hours ago, tracy_j said:

but what you are wondering is related to a very small subset of the field

 

My speculation (which cannot be more than speculation, unfortunately) modifies the above statement to "but what you are wondering is related to a subset of the field whose numbers are not known".  At best, we can only speculate how many non-binary and non-genderconforming people there are compared to MtF and FtM transgender people. If you know of any scientifically valid surveys that help to answer that, I'd most definitely be interested.

 

With best wishes,

 

Astrid

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And feel that the ratio of binary to nonbinary people are getting closer to 1:1 all the time. And I know, well am dating, at least two other enbies who one wants something close to what I want, and the other would have wanted what some of the more interesting web forum paper endocrinology is trying to achieve.

 

And I'm open about my transition goals and what I want my outcome to be on social media and like a lot of people come to me who want similar things.

 

So yeah we're don't even know how many people who want various nonbinary/nonconforming transitions there are. And I think there are people out there who have never considered it's an option or knows it could be done like with my experience asking about the bottom surgery I want and someone stating they know about the surgeon I'm going to but didn't know of the existence of or that Dr. Wittenberg does nonbinary/nonconforming surgeries when she openly advertises she does them on her clinic's website with pictures.

 

So yeah there's just literally no data on the various ways nonbinary/nonconforming transitions could be done and how many people want them in general. And like not just nonbinary transitions, but there are only a few doctors trying to understand or optimize like the normal transfem and transmasc HRT methods too.

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One of the complicating factors (and related to your point about the lack of support for non-support of non-binary/non-conforming folks), in my opinion, is that there is far more variability in the goals/outcomes that non-binary and non-conforming folks are seeking.  It's almost seems to be the case that NB/NGC folks are unique, each one finding their own place on the gender spectrum, appearance and clothing choices, etc.   But there isn't a goal of "passing" as M or F, per se.  It's more about reaching a state where they (read: me!) are comfortable with how they present publicly, and being comfortable with not trying to be 100% female or male.

 

There are certainly some commonalities with MtF and FtM folks, to be sure -- among them dysphoria, hair concerns, whether to do HRT, and whether and what kind of surgeries to perform.  

 

For me, this continues to be a journey more than a destination.  I never stayed static in my life choices/appearance before I came out, and I have no intention of doing so now, either. Based on what I'm experiencing and (very important) how well I'm communicating and working together with my spouse, where I thought I was going earlier can change.  A case in point currently for me is HRT. After I started estradiol 13 months ago, my personal goals and what I feel comfortable with in public have definitely changed.  I've had these months to adapt, reflect, and talk over how I'm physically changing, but I'm mentally changing as well -- much more accepting and comfortable with my physical changes. I'm as excited about having a waist as much as I am about having a bust, for example.  Both are modest at this point, but for me, that's fine.

 

Onward, and with best wishes,

 

Astrid

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Yeah I agree 100%. That's one of the reasons I included simply learning more about the mechanisms behind the standard transmasc and transfem HRT. If we understand what's going on better not only can we optimize things for people who want more typical outcomes, but we can better tailor things to people who want atypical outcomes because we know exactly how everything is interacting.

 

And yeah for the second part of your reply I have been doing a lot of like deep introspection on things. I was going to put it in the nonbinary forum, but it really got so long I made it a blog on the site instead.

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18 hours ago, Astrid said:

 

My speculation (which cannot be more than speculation, unfortunately) modifies the above statement to "but what you are wondering is related to a subset of the field whose numbers are not known".  At best, we can only speculate how many non-binary and non-genderconforming people there are compared to MtF and FtM transgender people. If you know of any scientifically valid surveys that help to answer that, I'd most definitely be interested.

 

With best wishes,

 

Astrid

I must admit that I was making a bit of an assumption here, which I now realise. It does probably highlight that research needs to be done but, unlike the better known MTF and FTM transitions exactly where this would fit into social structure is vague to me. Re-reading this has cleared my mind a bit and I think that there may well be research about on partial transition (MTF and FTM), but not something I have investigated. Quite a number of members here only partially transition so that may cover quite a bit of the field. My approach would be to go into professional circles of search rather than (but as well as) Google etc, which are sometimes limited.

 

10 hours ago, Astrid said:

 

For me, this continues to be a journey more than a destination.  I never stayed static in my life choices/appearance before I came out, and I have no intention of doing so now, either. Based on what I'm experiencing and (very important) how well I'm communicating and working together with my spouse, where I thought I was going earlier can change.  A case in point currently for me is HRT. After I started estradiol 13 months ago, my personal goals and what I feel comfortable with in public have definitely changed.  I've had these months to adapt, reflect, and talk over how I'm physically changing, but I'm mentally changing as well -- much more accepting and comfortable with my physical changes. I'm as excited about having a waist as much as I am about having a bust, for example.  Both are modest at this point, but for me, that's fine.

 

A good point to think about here. You only really have to look at shared experiences here to see that responses to HRT are very variable. A big point though is that hormones are very powerful. They affect the whole body, including the brain, so what  the goal was at the start of therapy will almost certainly be different, even if subtle, at a later point. This indicates to me that the subset I mention may need research in itself to define. It does appear difficult to predict a point to aim for because of the variability. We all change over time anyway. My feelings are that radical intervention will change things so the target will vary. This is the pointing to the research needed. I think that maybe much of that is there. It really needs someone who is well versed and qualified in the field to sift through and extract the relevant information. It is something I feel that does need a multidisciplinary approach though, physical/surgical, psychiatric and social fields being represented so a representative group would be far better.

 

I am confusing myself with the variables involved here but I hope you get some of my drift. Really I know little but question much.

 

Tracy

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And then everything came to a head when I started taking hormones—and she found them. Of course, she initially got upset, but I think something broke for her, too, and she started researching and reading up on transgender issues. At the same time, she also made up her mind to support me, instead of resisting. This in turn made it easier for me to open up, and I have gained even more respect for her. The past couple of years we have been moving forward more positively. Last year, I came out to my place of work, and last week I had GCS. I have my own apartment, but spend weekends and other times here with her. We also chat online everyday without fail. I may move back in with her in the future, but I don’t know.    I suppose another important issue in this that many people don’t like to talk about is finances, but this also has a huge impact on relationships. Luckily, I have been blessed with a great job that pays well. My wife has a decent job, but probably not enough to live where we live now. Anyway, I am determined to take care of her to the end, and she has made up her mind to be emotionally supportive and friends with me.   We will probably be getting divorced soon, maybe even this month. If you’ve read this far, you might be surprised to hear that, and I think most people think of divorce as an absolute end, but I don’t, and I don’t think my wife does either. However, this will be a big change. Obviously, she won’t be able to think of me as her husband any more (that’s been slowly changing anyway), and I won’t be able to think of her as my wife. A big reason for our decision (and it’s a negative one) is Japanese law. Here in Japan, same-sex marriage is illegal; consequently, it’s illegal to change one’s gender while being married. In other words, for me to legally become female, we have to get divorced. (I acquired Japanese citizenship many years ago.)   So what will the future bring for us? I honestly don’t know. We’re both in our fifties, and nearing retirement, and we’re both pretty down on the idea of marrying again. However, she might find someone and fall in love, and I might, too. Personally, I would love to have a boyfriend, but I don’t know if I can make any commitments. My wife seems to be the same way. Of course, I want her to be happy more than anything, and I deeply respect her for supporting me, even if it’s taken some time for her to get to this point. I will be moving to an apartment that’s very close by, and she will stay in our condo, and I do not doubt that we will stay as close friends.   Conclusions? Message of the story? I think there are many, but this has gotten way too long, so I’ll leave that for a follow up post. For now, I’ll just say that if you love and respect each other, you have nothing to fear moving foward.    
    • Aurora
      First off, I am getting really excited.  45 days and counting till April 21st for my GCS.   Then also, when I had my major surgery on my stomach area back in early 2009 for cancer.  I found that just holding a pillow over my stomach area really helped out with pain when I sneezed or cough.
    • Myles97
      Thank you so much for that!! ❤️
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