You may not be as cisgender as you think you are..

[spacial]

Part of me wants to believe it's something physiologicaly wrong with me, because that would justify it all and legitimize me, and make transitioning "okay", even from certain "haters" standpoints.

Yeah, can relate to that. But it won't happen. The haters will continue because they can. Like all bullies they go for easy targets.

Best thing we can do is rise above it I'm afraid.

[JLT1]

"Unfortunately, your preference for knowing causes is not necessarily relevant to how medicine works. They usually come up with a differential diagnosis (DDx) -- fit symptoms to a probable and generally known condition, and treat from there. If they do the DDx poorly, you wind up with treatment that may be entirely wrong.  It's very rare for MDs or other health care pros to be certain of what condition you have, much less to be certain of causes, as science is a work in progress, and the commonly held conjecture of today may be entirely discredited or very much revised in another 3-6 months."

I have never heard that explained better.  Thank you.  I would assert that the the more common the condition, the more likely the DDX would lead to successful treatment.  Likewise, the fewer or less complex the symptoms, the better the DDX.  Similarly, the more knowledgeable the doctor, the better the DDX.  Then, there needs to be a clear definition of "successful treatment".  Lastly, and this is based on my experience, cost is an issue, if a definitive diagnosis does not change the treatment or the probability of a successful outcome, the diagnostic test will not be run.

In the case of an intersexed condition, the condition is not widely known, the symptoms are often complex with poorly understood causes, the manifestation of the condition can be different between individuals, knowledgeable doctors are few, diagnostic tests may or may not be available and there doesn't seem to be a uniform definition of successful treatment.  This is a problem.

So, what does a person with an intersexed condition do?

I used myself as an example.  The main part of my assertion was above but I needed the excellent summarry to make it.  That's really all.

If you could help me, see "My body is changing without hormones" thread.  Swelling was before hormones.  Probably a growth, some type of cancer, it's in my mind or XX/XY intersexed. (In addition to what I wrote, I have two eye colors, blaschko's lines (dermatologist got that one), a female bone structure, my male anatomy is slightly offset, I'm a 40D bra size, my pelvis is typical for a woman and one month into estrogen has produced an effect normally seen at six months.)  If someone could help me know how to ask a doctor for a certain MRI, I think I can get an accurate diagnosis.  (I was an NMR director before I took my current position.  NMR is a chemist's version of MRI and I know MRI instrumentation.)  Doctors won't order it because there is no standard protocol.  All I want is a standard protocol with an adjustment in one setting (relaxation time) for data acquisition.  I would even pay for it without insurance. Instead, they run every test they can think of running.

[Elspeth]

If you could help me, see "My body is changing without hormones" thread.  Swelling was before hormones.  Probably a growth, some type of cancer, it's in my mind or XX/XY intersexed. (In addition to what I wrote, I have two eye colors, blaschko's lines (dermatologist got that one), a female bone structure, my male anatomy is slightly offset, I'm a 40D bra size, my pelvis is typical for a woman and one month into estrogen has produced an effect normally seen at six months.)  If someone could help me know how to ask a doctor for a certain MRI, I think I can get an accurate diagnosis.  (I was an NMR director before I took my current position.  NMR is a chemist's version of MRI and I know MRI instrumentation.)  Doctors won't order it because there is no standard protocol.  All I want is a standard protocol with an adjustment in one setting (relaxation time) for data acquisition.  I would even pay for it without insurance. Instead, they run every test they can think of running.

Wow. With your NMR background I would (naively) assume you might have better access to this than I do. As it so happens, my ex is a radiologist, but subspecialized. However, I did help her when she was studying for her boards following residency, listening to and asking her questions as she would explain to me the workings of NMR physics.  I don't know if there are useful protocols for this.

I scratched out "it's in my mind" above, because I tend to think that's an easy out, and it's very rarely strictly true, whatever some people want to believe about the power of the mind... if it IS all in your head somehow, there's still probably some physiological aspect of that that means saying it's all in your head is pretty meaningless. If nothing else, the fact of the swelling, and the other oddities you list pretty much proves it's not all in your mind unless these symptoms and physical traits are not detectable to anyone but you.

What you've described sounds like it could be intersex (most likely some form of mosaicism) -- please know that I'm saying this only from memory. My textbooks are mostly outdated on this, and I really haven't kept current with where the research stands on these things. I say mosaicism, mainly because of the different eyecolors... as you say, considering the nature of mosaicism, yours could be a nearly unique case, and this could be at least part of why those treating you are not hunting too hard for a conclusive diagnosis.

I would imagine, though, that if it IS mosaicism, that it would be easier to confirm that through some kind of genetic analysis. MRI can't get that fine grained (that's the problem, for instance, with the BTSc structure that's under examination as a root cause of gender identity, it's just too small, and chances are there's no safe contrast agent that could isolate it from neighboring brain structures).  Given how MRI works, if you have internal oddities it might not be conclusive what the nature of the structures would be -- densities are just that, densities -- MRI doesn't give any cytological info, just pattern matching that can sometimes suggest cell types.  Still, I'm puzzled as to why they wouldn't look harder for some suspicious mass, considering the swelling pattern/cycle (I did dig back to your intro to refresh myself on the rest of what you've said). But again, my ex is the trained radiologist, not me, so there may be some reasonable explanation as to why they haven't felt MRI could sort this out.  There are many things MRI can't differentiate well, particularly in soft tissues.

I'll see if my ex is open to looking at this or at least have a discussion with her on whether she knows of anything, but she's going through a lot with my son (trans) at present, and while she is gradually educating herself on this more, she started off from a place of denial (wanting me to be the man she saw, even though or maybe because I was completely atypical for a man) -- trangendered issues are something she has emotional reasons for avoiding, is what I'm saying... she went to one of the top med schools, and one of the top 5 radiology residency programs, and a top fellowship in her subspecialty. She's very good at what she does, and also very clear on the fact that doctors rarely know anything with certainty.

[Annah]

Fathering children is a firm confirmation of being a fertile cisman...heavy beardgrowth and bodyhair as well...
So I don't understand some things you wrote?

you may wish to research various intersex symptoms before trolling next time. Your statement that intersex people cannot have children tells me enough that you know very little or nothing of the subject.

[Annah]

JLT,

I would recommend you to see a doctor. Normally intersex conditions are throughout a person's lifetime starting at puberty. It doesn't usually show symptoms when you feel that you may be transgender.

Personally, if I were you, I would see a doctor and get bloodwork drawn up before thinking your body is becoming female wthout hrt because you have that strong desire.

Better to err on the side of caution.

[Elspeth]

I would recommend you to see a doctor. Normally intersex conditions are throughout a person's lifetime starting at puberty. It doesn't usually show symptoms when you feel that you may be transgender.

With all due respect, unless she's fabricating something, JLT is already seeing at least one, and probably more doctors. You might want to trace back to the earlier comments she's posted. While I can't rule out imagined effects, some of the items she lists sound pretty physical to me. And in general, only those DSDs that present with obvious and clearcut symptoms tend to get diagnosed, and variations are often profound even for some of the more frequent ones.

Granted, as she did say, one of the things on the differential here, besides a possible intersex/DSD condition is some kind of mass or tumor that could be producing further hormones.

A second or third opinion from an actually doctor, though, couldn't hurt; on that I entirely agree with you.

[spacial]

It feels somehow silly that intersex feels like a dirty word because so many people latch onto the thought of being intersex in the TS community, makes me feel weird... also ironically trans is a dirty word in the intersex community for the same reason.

So yeah I feel pretty weird looking into being AIS... though I told myself I was def. not intersex until I had an unusual response to HRT and googling about my symptoms said that is what happens in AIS.

At the end of the day it doesn't matter... just be glad you weren't born with weird ambiguous genitals and forced into a gender role.

I'd be very upset if such a notion were to be suggested.

True, many people seek to rationailise what they do and claiming medical necessity to confront naysayers is not uncommon. Yet could any of us seriously criticise or find fault? We each need to do what we can to survive. I'd prefer someone sought defense in medical imperative if it will give them the peace to live.

[Annah]

With all due respect, unless she's fabricating something, JLT is already seeing at least one, and probably more doctors. You might want to trace back to the earlier comments she's posted. While I can't rule out imagined effects, some of the items she lists sound pretty physical to me. And in general, only those DSDs that present with obvious and clearcut symptoms tend to get diagnosed, and variations are often profound even for some of the more frequent ones.

Granted, as she did say, one of the things on the differential here, besides a possible intersex/DSD condition is some kind of mass or tumor that could be producing further hormones.

A second or third opinion from an actually doctor, though, couldn't hurt; on that I entirely agree with you.

Oh I wasn't referring that JLT was fabricating anything.

Her first post was about how when she started to have a strong desire to transition, her body started to feminize itself without HRT. Typically, Intersex traits occur during puberty and not many years later.

I was simply implying that she may wish to see a physician to make sure it isn't any "malice" physiological symptoms that may be developing. Others may state how wonderful it is to have a body start to feminize itself without aid once the person started to have a strong desire to transition. Me, living in a family numbered with Medical Doctors (my mother is a Cardiologist of 20 years, my Uncle is a Neuro Surgeon, my other Uncle is a Cardiologist Pediatrician) tend to think on the safer side to get it checked out because one doesn't grow breast all of the sudden without aid. Now, if she was 14 saying this, I would still recommend her to see a doctor. Wouldn't you want to see a doctor if your body was reverting to another gender during middle age? I know I would..just to be on the safe side.

A lot of medical research has shown that men who developed an increase supply of estrogen and a decrease supply of testosterone (without the aid of Hormone Replacement Surgery or Orchiectomy) are early warning symptoms of Carotid artery intima-media thickness and will triple the risk of a stroke.

I go by the adage to always see a doctor whenever your body starts to change contrary to its design naturally without pharmaceutical aid. In my opinion, that is good advice and something everyone should look into and no one should take offense when someone suggests it.

[Elspeth]

Oh I wasn't referring that JLT was fabricating anything.

Her first post was about how when she started to have a strong desire to transition, her body started to feminize itself without HRT.

This threw me too, and I'm very much aware that differential diagnoses can contain a lot of things, and the details she's given so far are confusing enough that I can't really draw any conclusions that I would want to stand by. If you follow more closely, though, it's not clear to me that this was an entirely accurate statement, and some of the things she describes, such as different eye colors, open the door for other possibilities. Frankly, if I had to bet right now from what she's written, I'd lay my money on some sort of mass, or something like that. I don't like going against Occam's Razor or I'd consider something involving both a mass and some form of mosaicism that involved very undeveloped ovaries floating around somewhere, maybe even some kind of mixed tissues in the testes...

Most intersex conditions present at puberty (or earlier) depending on the type, but most is not ALL. And it's fruitless to try an amateur DDx when I haven't even seen her in person. And potentially harmful to try. Especially when my main handy source is a 16th Edition copy of Harrison's, whose section on DSD is brief and schematic at best. I probably have other sources somewhere, but they'd be equally out of date. (The current edition is the 18th edition).

If you happened to read my posts from today in response, then you know I was married to a radiologist. And I was sort of bridesmaid at her sisters wedding, her sister being an Ob/Gyn. And it may not have been clear that I was living with her from before the time she started med school. I would have gone into medicine myself if my grades and family support had been there. With various non-trans conditions, though, it's probably for the best that I didn't. Certainly, my ex is the better mind for this, and while I was a National Merit scholar, her SAT scores were way better than mine, and she went to a somewhat better undergrad college.

No one was taking offense at your suggestion of seeking further opinions. I suggested it at least twice over the course of my posts.  Something is going on and it probably is not entirely good, if the changes (such as extreme groin pain) are part  of the picture. But people are often (and sometimes for good reason) suspicious of or projecting upon doctors and their approach to problems, sometimes projecting prejudice when there's a simpler explanation... as long as there is a sense that something is being missed, though, I tend to feel (especially given my own history and my mother's) that it's a good idea to get another opinion, especially if you feel you're not being heard correctly, and that does seem to be an element in JLT's story, at least as I've read it.

For reasons I suspect you agree with, from what I've gathered of your own medical history, there is at least some reason to be skeptical when it comes to how some doctors treat DSDs/intersex conditions, but at least some part of that is the great variety of conditions there are within the DSD category, and how widely varied some of them can be in terms of symptoms, timing and triggering of things that could lead to a diagnosis.

[JLT1]

Elspeth and Annah - you are both correct.  Doctors - my GP, 4 endocrinologists (passed up the chain to ever increasing specialists), 1 dermatologist, 5 urologists (passed up the chain to ever increasing specialists), 1 heart doctor, 1 geneticest.  The last urologist sent me to a very odd research center staffed by retired Mayo Clinic folks where there was a three month wait to get in to see that specialist.  It's expensive and half of what they do doesn't seem to be covered by insurance. That guy separated things out, looking for more than one problem and managed to find one problem, which left everything I have discussed on this board as a second problem.  Should make things easier.  He did determine that my first pelvic/abdominal  MRI was not sufficient (which I had been saying).  A second abdominal MRI showed the problem he did identify (new instrument, experienced staff - beautiful images).  He is working on trying to figure out the rest.  I have a follow up scheduled.  The geneticest confirmed a suspected genetic problem with metabolism and wants to focus on that.  She really didn't know what to do about the rest.  I'm going to get that MRI somehow - even if I have to go to a research grade instrument and then get it redone by a diagnostic instrument.  I also get my bonus in April - 1/3 of my salary - I'll get the expensive genetic work done. 

In a strange way, I'm not totally worried about me.    And I sincerely thank you for support and suggestions, sometime I do get a little depressed. I'll crack this rather tough nut. I worry about others who don't have good insurance, who don't have a significant other for support or who don't have the money to work through things.  So, I ask, what can I do to help anyone else in this or a similar situation to solve their issues?

[spacial]

Well I meant more how people are always questioning if they are intersex even if the symptoms of IS conditions preclude them, cause It hints at a kind of desire to be IS that a lot of IS people take as offensive because they struggle immensely with their conditions... I don't think it has much to do with medical necessity though because medical professionals are more experienced with and more willing to treat transsexual people than intersexed people. 

This ties in well with a point Padma made in another thread:

What tires me out is how third parties seem to require "expert opinion" before they will accept that someone experiences their gender as incongruent. So often I hear people being told variations on "you don't know yourself." This is what puts tremendous pressure on trans folk to self-justify. None of this should require justification in the first place. And by extension, people with non-binary gender identities should not find themselves having to justify their genders to other trans folk.

We don't need to and shouldn't try to explain anything to anyone.

Our choice.

[Elspeth]

We don't need to and shouldn't try to explain anything to anyone.

Our choice.

While I agree in principle with Padma's statement as it applies, especially, to those with non-binary genders, there are situations where description and explanation are not done simply to satisfy someone's unqualified, irrelevant or sometimes misguided curiosities or "concerns."

Oftentimes, though, someone who is questioning, or beginning to question binaries, or some other aspect of a friend or relative's condition, may be doing it out of genuine concern, or even budding curiosity and questioning (which may be related to their own anxieties about their own gender identity). And they may be asking questions in ways that seem rude, in many cases because they don't have the vocabulary, and are too well entrenched in prevailing and essentially mistaken assumptions that gender is binary, just because they don't know any better, and are at the very start of their own journey of understanding and/or questioning.

If one can avoid personalizing the questions, in at least some (possibly large) percentage of cases, one might find that one was helping that person expand their horizons.  Likewise, responding reactively could lead that person to avoid asking questions they could really benefit from discussing. Of course, in many cases the entrenchment runs deep... and even if you happen to have an impact on that person's thinking, you might not notice the effects immediately, or even see them become clear over the course of months or even years.

And if someone is searching for causes, some seemingly rude questions or speculation might also come across as "appropriation" to some people who've lived with terrible distress and repeated treatments, probings and surgeries because of their particular DSD (intersex) conditions.  There's also the problem that having a condition, while it often means one will become very well-versed in the details of that specific condition, and at least some of those that present with similar symptoms, can mean that each person who has a personal history that is informed by their treatment at the hands of medicos for DSD-related problems is likely to have a different, and sometimes profoundly different and incomplete understanding of just what falls into the DSD category. A trained doctor has the small benefit of knowing that their own understanding is incomplete, but many laypeople still suffer under the delusion that medicine "knows" things, when it actually tends (almost always) to deal in statistics and probabilities.

There's an excellent video on this from James Burke, part of his classic series on how the scientific age came to be, The Day the Universe Changed.

I do tend to think, over time, and especially if some of the more recent research is confirmed on etiology of transsexual identities (and perhaps transgendered identities in the broadest terms), that those conditions could wind up being recategorized as part of the DSD collection. It won't mean that someone who might now be called transsexual  now has Klinefelter's, Turner's, AIS or any of the other conditions on the DSD laundry list... it would only mean that doctors were recognizing that the condition comes from a specific range of physiological causes during fetal development (or whatever turns out to be the etiology of the condition).

This also does have relevance for non-binaries, in the sense that growing evidence to suggest that gender IS a continuum and not a binary, even though the population distribution may be shaped more like a dumbbell, that kind of evidence, once it's found and fairly unimpeachable, might very well lead in part to a shift in social prejudices. In the present moment, though, it has very little practical relevance, as long as many people do remain attached to the prejudice that gender is simple and visually detectable.

[spacial]

I understand your points Elspeth, but completel agree with Padma here.




A personal perspective.

I think, as humans, we need a level of self esteme, a recognition that we are of value to ourselves and others, as the fuel, if you like, to simply go on.

In another thread Felix is talking about how so often, the strong seem to impose their position, their standing, to harmful effect upon others.

Now we don't tend to see this same effect, so often with children. We do impose authority, but hopefully, our intentions, at least, are good.

But with peers, I think the strong can frequently be quite nasty. Not so much for the sake of it, but to reimpose their own standing, even their own self esteme, back onto us.

For example, we announce that we are transgender. This puts them into unfamiliar territory, a point where their own sense of self and worth are not so apparent. They respond by asking for information then work the discussion round to an evidence situation where they can and I suggest, know, re-impose their own esteme onto us. In their mind, by exposing an apparent lack of recognised evidence, they have disproven us and shown they have the greater knowledge, standing.

We can end up crushed. Worse, we can end up doubtful of ourselves, that leads to a spiral of self doubt, loss of self esteme and in extreme situations, put ourselves into a target status, for bullies.

I've been working on this sequence of notions for a number of years, but have only now, managed to find a coherent way to describe it. 

[Elspeth]

A personal perspective.

I think, as humans, we need a level of self esteme, a recognition that we are of value to ourselves and others, as the fuel, if you like, to simply go on.

In another thread Felix is talking about how so often, the strong seem to impose their position, their standing, to harmful effect upon others.

And perhaps nowhere has appeal to authority and expertise been done more blatantly, and more cruelly (especially during the mid-20th century, when HRT and SRS first became options) than in the medical profession. I'm not disagreeing with either of you on that.  There are countless examples I could name, especially for anything that was classified as any kind of psychological "disorder" when many such conditions were probably more accurately described as natural variations.

Maybe the most blatant example: when my ex was in med school, her professors were still referring to pregnancy as a disorder.

Our culture has so much glaringly obvious bias, and so much of it tends to still surround classifying female as other, faulty, sinful, the cause of original sin. Is it any wonder that those in power feel empowered, justified, even obligated, to "put us in out place"?

My ex's main concern for our son at this point is not really whether or not he is trans... it centers in her recognition that being trans identified puts him in a potentially harder place to be within society, even though there seems to be some sense from history and experience that, despite some terrible individual cases, those who transition to male often experience some objectively measurable benefits, at least in terms of status, income and other material measures.  But those benefits do not necessarily translate to full acceptance in all areas of society, and as long as the society remains ill, and poisoned by its strange and unproven notions about the nature of gender and physical sex identity, that second-class status is likely to persist.

[JLT1]

I once heard a doctor tell me that she had been told in medical school "Not to do a test unless she would know what to do with the answer".   Could this be part of the problem that some less than totally cis individuals are facing?

[spacial]

I think I agree with you here Elspeth. It ties in with something that I mentioned in another thread on a similar discussion. (Apologies if I seem to be publicising my own sounds).

Re: Psychiatry expert: 'scientifically there is no such thing as transgender'
« Reply #31 on: Today at 12:50:30 pm »
https://www.susans.org/forums/index.php/topic,134014.msg1084097.html#new

I feel hopeful about the future.

JLT1

Yeah, sometimes, they doth protest too much!

[Elspeth]

I once heard a doctor tell me that she had been told in medical school "Not to do a test unless she would know what to do with the answer".   Could this be part of the problem that some less than totally cis individuals are facing?

This comes (at least this would be my ex's view, because we discussed it many times, enough that I think I understand the logic) from the fact that the more one does exams, the greater the odds of finding something that might be something very bad, but in the vast majority of cases, if not supported by other symptoms, could just be a variation with no great significance. Some of the logic here is that once they see something, they're obliged to admit, and in present-day practice, discuss with patients those possible problems.  The patient, especially if they are not a math wiz and very comfortable with statistics, is very likely to get anxious about something that might be a 1 in 12 million thing, that might require major surgery or other intrusive measures to rule out.

Consider the worst case scenario: A test to rule out something for which there is no adequate treatment or cure at present. There's a 10 percent chance, let's say, that the patient has that condition and a test would confirm it. They might die in 2 days (10% chance) or they could live to over 100, barring other problems.  Where is the advantage in doing the test if the doctor won't be able to do anything for the patient, particularly if the test itself has any risks associated with it. But even if it doesn't, the only outcome would be to tell the patient that they might be dead in 2 days. Did you help the patient by telling them that, when you couldn't do anything else to help them?

Human bodies, not only in sex organs, have a huge range of variations, and in many cases, the research there is on rarer conditions tends to be very imperfect when it comes to things like sample size and methodology. Even research on some common things, and ideas about the ranges of "normal" findings for any given test can often be unreliable or based on fairly thin research and sample sizes, that could mean that the true range of variations are simply not well understood.

In some ways it might seem like triage, but in others it's an effort to be responsible and follow the core Hippocratic oath. Doctor know that less than 100 years ago, one was at much more risk going to a doctor, than not going to one, and the same could still be true in some conditions (I suspect that is still very much the case with many psych conditions, considering how problematic the origins of psych theories are, and the difficulties inherent in doing any objective research, when the research has to be done by biased and imperfect human beings who may have their own psych issues affecting their approach to the research).

[Annah]

I once heard a doctor tell me that she had been told in medical school "Not to do a test unless she would know what to do with the answer".   Could this be part of the problem that some less than totally cis individuals are facing?

I wouldn't agree with that Doctor.

On many occasions, when a test is administered for unknown symptoms, the results could yield answers that the doctor wasn't expecting at all...or if the answers are still a mystery then usually the test results are sent to someone who is an expert in which the results stated.

When my mother doesn't know the answer or is confused about symptoms she ALWAYS administers a test. Well...because if a test was not administered in which a problem could have been caught, then a doctor may be liable. Tests almost always benefits the patient or brings them one step closer to an answer. Doing no tests will leave you in the same exact spot as you were in the day before.

[Elspeth]

I wouldn't agree with that Doctor....

When my mother doesn't know the answer or is confused about symptoms she ALWAYS administers a test. Well...because if a test was not administered in which a problem could have been caught, then a doctor may be liable. Tests almost always benefits the patient or brings them one step closer to an answer. Doing no tests will leave you in the same exact spot as you were in the day before.

There may nearly always be a test that could help to narrow the diagnosis, but that, by definition, would not be the kind of test this doctor was describing. It's a pretty standard part of commonly accepted practice "Not to do a test unless she would know what to do with the answer"  But in practice this far more often means considering the possible outcomes of the various tests one might be considering, to select those tests that are most likely to lead to a proper diagnosis, by the least harmful, and preferably the most direct route that does not rely on making unwarranted assumptions.

I am fairly sure your mother is not one who would do a test she would not be able to use to some clinical benefit. Even ruling out something and not yet reaching a firm diagnosis, would still be part of the logical flow of the diagnostic process.

[Annah]

if a patient was having problems and she could not figure out what the issue was, the first thing she would do is administer some labwork (tests) regardless whether or not she would know the answer. Even if she thought she would not know the answer before hand, she would still run a battery of tests and have a peer look over the results if she was stumped.