There is one aspect of my life and transition that I don't understand and I am starting to wonder if I ever will. Like some other MTFs, I never went through a phase of 'male behavior,' although I have a nominally male body. I showed signs of being different all along, such as lack of arm strength and poor muscle tone and coordination. I was a bit slow to walk and talk, and I had (and have) reading comprehension problems. I really think my biggest problem was that I didn't behave like a proper boy and my religious, conservative parents didn't like that and were concerned about their reputations, though they are long gone and it is hard to reconstruct the past.

One mystery was solved when I started to transition. My baseline hormone levels were very peculiar. My testosterone was in the high female range, and follow-up tests showed that I had a serious lack of the hormone pregnenolone. After researching this on the web, but without any "hard" evidence beyond my own speculation, I became concerned that my mother might have been given DES when she was pregnant (in 1950). She had a difficult pregnancy, although I don't know the details, and I had some kind of urinary tract problem that was surgically corrected when I was about 4 years old, but my parents would not discuss it (they were extremely inhibited). There is really no way for me to tell.

I then became worried about other possible complications, especially testicular cancer, but I eventually convinced myself that I was being a bit hysterical. Unfortunately, though, when I went for my first consultation with an SRS surgeon, this spring, he found a tumor and I was subsequently diagnosed with testicular cancer.

A left radical orchiectomy and 3 weeks of radiation treatments later, I am seriously wondering what really is up with this body of mine and I am certainly not going to worry again about sounding hysterical. As far as my inner feelings go, I identify in many ways as a transsexual and in some ways as intersex. I doubt, though, that I have a "recognized" intersex condition. How many of us are there that are like this?

Good afternoon, Megan.

Would you perchance have the digit ratio? The female arm carry angle? Are your elbows at, below, or above your waist? Under virilized genitals?

There are many here like you.

Some links for ya. These discuss undiagnosed intersex conditions.

'I feel like a freak.'
https://www.susans.org/forums/index.php/topic,6719.0.html

'Mild Androgen Insensitivity Syndrome'
https://www.susans.org/forums/index.php/topic,3459.0.html

'Never seen a <> like mine.'
https://www.susans.org/forums/index.php/topic,122530.0.html

Undiagnosed intersex conditions are quite common among TS.

Hi ,

My 2nd (index) and 4th fingers are about the same length. If I measure carefully, my 2nd fingers seem to be very slighly longer. The "carry angle" is something I just learned about here and I don't know--but my arms sure aren't of much use for throwing and catching; that I know. My arms and legs are long (due to low testosterone?), and I'm 6' tall. I would say that my elbows fall just above my natural waist; the extra length seems to be at the ends of my forearms and I have always had trouble with them sticking out of long sleeves. Men's shirts would swallow me because my arms are thin and because I often needed to go a size larger for sleeve length.

I wear ordinary one-size women's jewelry, though it is not as loose on my neck and wrists as I would like. I can't wear solid bangles because my hands are a little too wide. I have long skinny fingers, too. All and all, this body is a bit odd. I don't really mind that much, until it tries to kill me like it did this spring. Naturally, I would very much like to have a smaller model, but I don't see that happening in this lifetime. I am able to do things with other women now without my appearance being a problem, and that is what matters most. Men often feel intimidated, and sometimes say so, but I am blessed with not having any special attraction to them.

All of these markers are interesting, and some might be significant, but it is really hard to draw conclusions from any of it.

Quote from:  link=topic=17558.msg135914#msg135914 date=1186767731
Good afternoon, Megan.

Would you perchance have the digit ratio? The female arm carry angle? Are your elbows at, below, or above your waist? Under virilized genitals?
...

Quote from: Megan on August 10, 2007, 01:38:15 PM
Hi ,

My 2nd (index) and 4th fingers are about the same length. If I measure carefully, my 2nd fingers seem to be very slighly longer. The "carry angle" is something I just learned about here and I don't know--but my arms sure aren't of much use for throwing and catching; that I know. My arms and legs are long (due to low testosterone?), and I'm 6' tall. I would say that my elbows fall just above my natural waist; the extra length seems to be at the ends of my forearms and I have always had trouble with them sticking out of long sleeves. Men's shirts would swallow me because my arms are thin and because I often needed to go a size larger for sleeve length.

I wear ordinary one-size women's jewelry, though it is not as loose on my neck and wrists as I would like. I can't wear solid bangles because my hands are a little too wide. I have long skinny fingers, too. All and all, this body is a bit odd. I don't really mind that much, until it tries to kill me like it did this spring. Naturally, I would very much like to have a smaller model, but I don't see that happening in this lifetime. I am able to do things with other women now without my appearance being a problem, and that is what matters most. Men often feel intimidated, and sometimes say so, but I am blessed with not having any special attraction to them.

All of these markers are interesting, and some might be significant, but it is really hard to draw conclusions from any of it.

While I usually think some TS are 'looking' for some kind of bodily anamolies for evidence of a undiagnosed intersexed condition to somehow validate their identity as male or female, in your case, I think it would be worthwile for you to look into the possibility. It sounds as though you have a severe hormonal condition. Female T levels usually range from 30-60, sometimes higher. Male T levels range from 300-100 or so with the average I think being 500-700 or so.
Even if you had T levels of 100 or so, it'd still be over to the female side. That's a severe imbalance.
With that kind of lack of substantial T, your body may very well be in the female range with female characteristics.
Especially if you've had low testosterone your whole life. You wouldn't have experienced much effects from a male puberty.

You should definitely get it checked out - could be no more than the hormonal condition and the effects it had on your body, or could be more.
Most TS who believed they are undiagnosed IS, have no kind of medical reason to even question if they're IS.
Instead, they're just grasping at straws. But with that severe of a hormonal imabalance, there may very well be more to your body than meets the eye.
Good luck,

Quote from:  link=topic=17558.msg135930#msg135930 date=1186772225
...
While I usually think some TS are 'looking' for some kind of bodily anamolies for evidence of a undiagnosed intersexed condition to somehow validate their identity as male or female, in your case, I think it would be worthwile for you to look into the possibility. It sounds as though you have a severe hormonal condition. Female T levels usually range from 30-60, sometimes higher. Male T levels range from 300-100 or so with the average I think being 500-700 or so.
Even if you had T levels of 100 or so, it'd still be over to the female side. That's a severe imbalance.
With that kind of lack of substantial T, your body may very well be in the female range with female characteristics.
Especially if you've had low testosterone your whole life. You wouldn't have experienced much effects from a male puberty.
...

This is where I sometimes don't know what to do next. My baseline testosterone was 42, before we tried to do anything about it. The doctor had me try taking pregnenolone as a supplement (it's available here in some health food stores). I gradually noticed that I was developing a degree of stamina--I could experience a "second wind" for the first time in my life--but my hair also started falling out faster. The worst part was that my testosterone went up to 480 and then 600. I didn't know, because it didn't seem to have any major effect at all on my thinking, although I do believe my short term memory improved from the pregnenolone boost; it's back to normal now (awful). I finally, after discussing it with the doctor, quit taking the supplement, another step that may have saved my life (because of the cancer).

I don't really think this doctor understood the situation, and I haven't found one yet that does. My instincts tell me, and have been telling me for years, that SRS is important to me for health reasons as well as the usual ones, and I am going for a 2nd surgical consultation this month. I feel like I am having to make my health decisions without enough information, because the doctors I keep finding don't know much more about this than I do, and they show a remarkable lack of interest in learning more. What to do, what to do?

I wish my doctor had taken baseline readings before HRT.  She didn't want to raise any red flags with insurance though and it allowed me to start HRT right away.  Still it would have been useful.

42 T level is pretty serious. Hormonally, you're a girl. I wonder if that may have played some role in your testicular cancer?
You probably need x-rays to see the state of your organs. Maybe an endocrinologist could examine you and determine if this more going on than the hormonal condition. You definitely need it checked out.
Wish I could be of help.

Megan,
  I am intersex (to the max as I like to say). I have medically been determined. I am surprised your doctor wasn't curious enough to order testing to explain your hormones as mine did (and I live in an extremely conservative area of Canada). I was sent for x-rays and an MRI so my doctor could understand why I had high estrogen and low androgen and my hormones were all equivalent to that of a gg. Mind you, my voice and other things probably also helped sound the alarms too. I know there are these guidelines everyone refers to to try to be sure where they fit, but I don't always feel that's entirely safe. I mean if every women had certain type and length arms, certain voice, certain height etc etc then no guy would be safe-we would all be beauty queens and guys would be gawking at so many women they would continuously walk into walls or traffic!! LOL. It would be a good idea to request further testing though just so you know where you stand. For me, for example, I have all my female organs and my penis is intertwined into my vaginal area, thus my vagina is partially closed. Since I have all my organs in place and all is healthy and working I have opted not to persue surgery. What would it accomplish that I don't already have? If only I could get rid of this dang facial shadow I would be all set. There are a battery of tests they can do for you and you just need to be firm in your requests for them. Good luck girl,
         Kim   

Quote from:  link=topic=17558.msg135937#msg135937 date=1186774240
42 T level is pretty serious. Hormonally, you're a girl. I wonder if that may have played some role in your testicular cancer?
You probably need x-rays to see the state of your organs. Maybe an endocrinologist could examine you and determine if this more going on than the hormonal condition. You definitely need it checked out.
Wish I could be of help.

,

Mentally I'm a girl, though I was not raised that way and that has taken its toll. Physically I am a mix, but male on balance, but not able to function socially as a male. The physical aspects distract doctors, I think. I had a normal beard, and the body hair grew thicker in my 40s.

I actually did request a referral to an endocrinologist, but endocrinology (it is a self-contained HMO, Kaiser) insisted I see someone else first--they apparently didn't want to deal with a TS taking hormones. I contacted my psychologist there for help, and he forgot about my request. Before I could do anything else, I found myself battling cancer. I do have people I can contact if this seems to be taking too long, but I am starting to doubt that they have anyone nearby within the system that can help much. The doctor that prescribes my hormones is overloaded and hard to reach, and I haven't heard from her since the beginning of the year. I can see that the HMO is screwing up.

I had a rather extensive CT scan post surgery, looking for signs of spread, and I asked the radiation oncologist I am working with to confirm that there was nothing visibly unusual about my adrenals, since that seems to be where the problem starts (who is the doctor here?). The radiologist's report stated that they were normal. The doctor told me that he is exploring a hypothesis that hypogonadism increases the risk of testicular cancer, and asked permission to publish information about my case, which he said was rare.

It would be much simpler if I weren't a TS pursing SRS, but I am and I want to try to have at least a few good years postop--I really don't know how many of those I have left now. I need to find a way to pursue SRS and deal with all this other stuff at the same time. And no, the other health plans I have available don't seem to be any better. A TS friend of mine was forced to switch to one, and spent months just finding a primary doctor in this area that would work with her.


Posted on: August 10, 2007, 06:20:31 PM

---

I am starting to see what to do again. It seems to have been my nature to be shy and hold back, but I had best not do that in this situation. The cancer experience has also changed me; perhaps I am starting to see that I don't have all the time in the world left to do what I need to do.

Thank you to all of you that have replied.

Hmmm....well, having experienced an "unusual" puberty myself, been small built my entire life, developed really ambiguous genitalia, and taken a karyotype test twice (when I was fourteen and last December, prior to my SRS) in my life, it could also be NOTHING.  Both of my karyotype tests came back XY, and there isn't any scientific explanation for the less than male genitals I was given my nature. So yeah....

tink

Quote from:  link=topic=17558.msg135930#msg135930 date=1186772225

Quote from: Megan on August 10, 2007, 01:38:15 PM
Hi ,

My 2nd (index) and 4th fingers are about the same length. If I measure carefully, my 2nd fingers seem to be very slighly longer. The "carry angle" is something I just learned about here and I don't know--but my arms sure aren't of much use for throwing and catching; that I know. My arms and legs are long (due to low testosterone?), and I'm 6' tall. I would say that my elbows fall just above my natural waist; the extra length seems to be at the ends of my forearms and I have always had trouble with them sticking out of long sleeves. Men's shirts would swallow me because my arms are thin and because I often needed to go a size larger for sleeve length.

I wear ordinary one-size women's jewelry, though it is not as loose on my neck and wrists as I would like. I can't wear solid bangles because my hands are a little too wide. I have long skinny fingers, too. All and all, this body is a bit odd. I don't really mind that much, until it tries to kill me like it did this spring. Naturally, I would very much like to have a smaller model, but I don't see that happening in this lifetime. I am able to do things with other women now without my appearance being a problem, and that is what matters most. Men often feel intimidated, and sometimes say so, but I am blessed with not having any special attraction to them.

All of these markers are interesting, and some might be significant, but it is really hard to draw conclusions from any of it.

While I usually think some TS are 'looking' for some kind of bodily anamolies for evidence of a undiagnosed intersexed condition to somehow validate their identity as male or female, in your case, I think it would be worthwile for you to look into the possibility. It sounds as though you have a severe hormonal condition. Female T levels usually range from 30-60, sometimes higher. Male T levels range from 300-100 or so with the average I think being 500-700 or so.
Even if you had T levels of 100 or so, it'd still be over to the female side. That's a severe imbalance.
With that kind of lack of substantial T, your body may very well be in the female range with female characteristics.
Especially if you've had low testosterone your whole life. You wouldn't have experienced much effects from a male puberty.

You should definitely get it checked out - could be no more than the hormonal condition and the effects it had on your body, or could be more.
Most TS who believed they are undiagnosed IS, have no kind of medical reason to even question if they're IS.
Instead, they're just grasping at straws. But with that severe of a hormonal imabalance, there may very well be more to your body than meets the eye.
Good luck,

Actually , Testosterone is very dependent on ones age.  It would be abnormal for a male age 30 to have T levels around 500 (where the normal levels fall between 800-1000), but normal for somebody who is age 40.   These levels slowly peak then drop throughout a males life.  Free Testosterone levels are another thing altogether. 

Intersex conditions can fall under three categories according to the IS society: Physical, Chromosomal and Hormonal.  Some people have a strict chromosome view of IS conditions (basically if there is no chromosome anomaly its not IS).  The truth is the IS society has taken a more expansive viewpoint.  As far as they are concerned everything from distal hypospadias (a minor physical genital abnormality) to the most sever cases of chromosomal and physical aspects are IS.  The reason why they do this is determining what is or is not IS is dependent on the doctor, and not everybody who has ambiguous genitals or hormonal makeup will have a abnormal chromosomes.  As my doctor has said there are numerous conditions that can cause these conditions that can cause issues.

The thing is not all chromosomal IS conditions are coupled with low or hormonal insensitivity.  For example a male ring-Y may take on some aspects of Turner syndrome (Highly arched palate, female carry angle, neck webbing, low muscle development, scoliosis, atypical genitalia, small build and digestive issues), but ultimately develop as male (hormonally and physically), others may develop none of the aspects of turner syndrome.   Neither falls outside of the baseline male for androgens or androgen insensitivity (this is typical of ring Y males).    They are ultimately infertile, but they are chromosomal IS, even if the physical aspects may be minimal.  Ring Y males also have a high rate of  bi-polar and schizophrenia.  They also think this mosiac may be linked to transsexuality. 

Thats the reason why IS society has taken on an expansive view.  IS is not just chromosomal.  Because different doctors have different viewpoints.  To a geneticist what is IS is different than a surgeon, and an Endo may have a different view than both.  For example to a surgeon hypospadias and other genitial abnormalities without hormonal or chromosonal aspects is IS, but not to an endo or geneticist.  To a surgeon though, klinefelters is IS, though it is to both a endo and geneticist.  Part of the reason IS society has taken a broad viewpoint is to address this issue and the differing viewpoints. 

What is intersex?

"Intersex" is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn't seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types—for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY.

Though we speak of intersex as an inborn condition, intersex anatomy doesn't always show up at birth. Sometimes a person isn't found to have intersex anatomy until she or he reaches the age of puberty, or finds himself an infertile adult, or dies of old age and is autopsied. Some people live and die with intersex anatomy without anyone (including themselves) ever knowing.

Which variations of sexual anatomy count as intersex? In practice, different people have different answers to that question. That's not surprising, because intersex isn't a discreet or natural category.

What does this mean? Intersex is a socially constructed category that reflects real biological variation. To better explain this, we can liken the sex spectrum to the color spectrum. There's no question that in nature there are different wavelengths that translate into colors most of us see as red, blue, orange, yellow. But the decision to distinguish, say, between orange and red-orange is made only when we need it—like when we're asking for a particular paint color. Sometimes social necessity leads us to make color distinctions that otherwise would seem incorrect or irrational, as, for instance, when we call certain people "black" or "white" when they're not especially black or white as we would otherwise use the terms.

In the same way, nature presents us with sex anatomy spectrums. Breasts, penises, clitorises, scrotums, labia, gonads—all of these vary in size and shape and morphology. So-called "sex" chromosomes can vary quite a bit, too. But in human cultures, sex categories get simplified into male, female, and sometimes intersex, in order to simplify social interactions, express what we know and feel, and maintain order.

So nature doesn't decide where the category of "male" ends and the category of "intersex" begins, or where the category of "intersex" ends and the category of "female" begins. Humans decide. Humans (today, typically doctors) decide how small a penis has to be, or how unusual a combination of parts has to be, before it counts as intersex. Humans decide whether a person with XXY chromosomes or XY chromosomes and androgen insensitivity will count as intersex.

In our work, we find that doctors' opinions about what should count as "intersex" vary substantially. Some think you have to have "ambiguous genitalia" to count as intersex, even if your inside is mostly of one sex and your outside is mostly of another. Some think your brain has to be exposed to an unusual mix of hormones prenatally to count as intersex—so that even if you're born with atypical genitalia, you're not intersex unless your brain experienced atypical development. And some think you have to have both ovarian and testicular tissue to count as intersex.

Rather than trying to play a semantic game that never ends, we at ISNA take a pragmatic approach to the question of who counts as intersex. We work to build a world free of shame, secrecy, and unwanted genital surgeries for anyone born with what someone believes to be non-standard sexual anatomy.

Source: Intersex Society of North America
http://www.isna.org/faq/what_is_intersex

Hi Amy,

From reading their website I do have the impression that ISNA takes a more flexible view than some, but I didn't find reference to the three categories you mentioned, "Physical, Chromosomal, and Hormonal." There is a lot of information on the website, and I could easily have overlooked something. Is there a particular place I should look (and I just hope it isn't in big letters on the home page; sometimes those are the hardest to see).

My experience with IS websites to date is that there are two recognized categories, physical and chromosomal. "Hormonal" generally doesn't fit. I don't really find that in itself to be a problem. I don't want to call myself IS if that is not how the word is used. It is more than a little frustrating, however, when I go to talk with doctors and I am not able to find a medically recognized category that I can use. I don't need need the validation of belonging to a certain category, but I do want to better understand myself so that I can understand my particular health risks. This was all hypothetical until I was dignosed with a rare cancer, but not any longer.

I suspect, without having any way of knowing for sure, that a minority of transsexuals that are physically unusual have been exposed to endocrine disrupters, either from medications (such as DES) or from environmental sources. As such we could be the "canary in the coal mine." When we seek medical help, we run afoul of a specialized, compartmentalized system that doesn't deal well with conditions that they didn't learn about in their textbooks and that cross over between specialties. And the frequent lack of curiosity over seeing something new and unusual is very distressing.

While the problems being seen in wildlife and being attributed to endocrine disrupters are often IS issues, it could be that in humans the issues tend to be identified more as TS, especially by those that don't consider IS to include hormonal-only causes. Some strict definitions of TS tend to exclude those with hormonal abnormalities, although that at least hasn't affected my ability to seek treatment so far. I can easily imagine important scientific evidence being ignored because it doesn't properly fit into either the IS or the TS category!

I obtained a copy of my pathology report today from my cancer surgery. The local lab didn't understand what they were looking at and they sent it out to Stanford University Medical Center, as they often do, for evaluation (while I waited a month to learn the prognosis). The comments (response) start out "Thank you very much for submitting this difficult and interesting case for consultation." Yet I encounter almost no medical curiosity, and no support for trying to see the bigger picture of what happened. My radiation oncologist was curious, but it was because he has a particular hypothesis he is exploring that my case, which he called rare, happens to support. He asked my permission to publish it, making it clear that there would be no direct benefit to me in doing so.

Sometimes I feel like I am just a lab specimen, not even alive, where medical science is concerned. I seem to have to do my own research and dignosis, and gauge the risks myself. Now I will need to take this pathology report, Google the terms that it uses, and search for connections. And while I don't personally know other people in this kind of situation, I know they are out there.

Oh well. I will continue to do as I have been, enjoying what I can of my life (now that I am transitioning), and dealing with the rest as it happens. I do want to thank everyone again for your comments. I have a better idea now of what I need to insist upon from my HMO, once I find an MD that I can work with.

Well the three categories comes from a website describing the views of three different specialties (endo/geneticist/surgeon).
Thats where I got it from.  It broke down the differences between the three really well.  If I find it again I will link it.