My "parts" are unusal for a girl

[hazeofconfusion]

Where to start? 
I am 29, XX female. and was born very, very early.

I noticed in the past that my anatomy was not like a normal females, certain parts where larger than the should be for  a "normal" girl.  Due to the size, still, I have an obvious "something" hanging below the usual parts, which to me, looks like a "penis".  Does that make more sense?  My OB said that it is a normal variant some woman have, and I could have surgery to make it smaller, so I am not totally nuts here!  My family even jokes, still, that "maybe I was really a boy", so I don't think it is just me.  I also had a larger amount than normal of testosterone as  young girl, but my other levels of hormones seemed normal, from what I understood of reading through paperwork I recently found.  When I heard the term "intersex" as an older child, I immediately thought that is me, so this isn't a recent discovery.

Also, dr's mentioned in their paperwork of these differences, but yet, no one mentioned them to me.  I have gone to urologists, as well as my gyno, for health problems, and none of the uro's mentioned my differences.  Maybe they figured I knew, and was embarrassed, if they brought them up?

I did have my karyotype tested at around 10/11 years old, and it was XX.  Any other ideas as to what is going on with me?  I do have a chromosomal disorder I was diagnosed with as a younger child, and through recent research, discovered that "ambiguous genitalia" was an uncommon occurrence with it!  I need to suck it up, and ask a dr. to look into this I think.

[carol_w]

It sounds to me like that you have some form of the condition Congenital Adrenal Hyperplasia.  Here's a quote from an intersex support website of the (no longer in existence) ISNA:

CAH occurs when there is a broken genetic "recipe" for making cortisone in the adrenal glands (the glands on top of the kidneys that make various hormones and add them to the blood stream). Because the recipe is broken, the adrenal glands, while trying to make cortisone, may make an unusually high level of other hormones that are "virilizing". That is, they can make XX embryos have larger than average clitorises, or even a clitoris that looks rather like a penis, or labia that look like a scrotum.

To be more specific, intersex occurs in relation to CAH when an anomaly of the adrenal function causes the synthesis and excretion of an androgen precursor, initiating virilization of a XX person in-utero.

Because the virilization originates metabolically, masculinizing effects continue after birth. So CAH can cause the person to develop masculine-typical characteristics like dense body hair, a receding hairline, deep voice, prominent muscles, etc. Sex phenotype varies along the full continuum, with the possible added complication of metabolic problems which upset serum sodium balance.

The metabolic effects of CAH can be counteracted with cortisone. The long term use of cortisone itself produces significant dependence and other side effects, all of which need to be explained honestly and openly.

It sounds to me from this and earlier posts that you need to see a gender therapist BEFORE you do anything about the physical side of things, though.  It sounds like that you're more comfortable with your male side and if you need to take T complete a transition to male, I would assume that you would probably want to wait and get any physical modifications done all at the same time.

There are MANY FTM's on this board, though, that can speak to this better than I.  You might want to jump over to one of the FTM topics and see what others there think. 

I hope this helps you.

[hazeofconfusion]

Thank you for the quick response. I think I have something like CAH as well
What sort of doctor would I see? An endo?  Before I talk to my therapist, or does it matter?

I am there too, and many agree with the two of us, that something is different, and to figure out what before doing anything else.

[Northern Jane]

A larger than normal clit would be a direct result of higher than normal T. If you have periods, any Intersex condition is likey to be very minor. You may not want to make much of the I possibility if you may ever want to transition. If you are determined to be Intersexed, the normal rules for trans transition don't apply.

[hazeofconfusion]

Northern Jane- I don't want to be IS, But both that, as well as my labia, are large. I had high T levels as a child, and worried what future partners will think of me.

Why is it more difficult to transition with an IS condition?

[mm]

hazeofconfusion, have you or have you ever had a period and are they regular?  If you do that would say your ovaries are working.

[hazeofconfusion]

Due to medication to stop puberty, I didn't get a cycle until 16 or 17, and it was, and is irregular. Even though I have been on birth control pills bc of this for 10 years now.

[Shantel]

I don't want to be IS, But both that, as well as my labia, are large. I had high T levels as a child, and worried what future partners will think of me.

I had been discussing this same thing with Reedling in the Androgyne forum introductions thread. You may want to watch the following segment as it will shed some light on this which isn't uncommon.

http://www.oprah.com/oprahshow/Shedding-Light-on-Intersex/4

[hazeofconfusion]

That is really interesting, Shantel.  What have you and Reeding been discussing, if I may ask?

[Shantel]

That is really interesting, Shantel.  What have you and Reeding been discussing, if I may ask?

Go to the Androgyne Forum here at Susan's and click on "Introductions" and read some of that thread, you'll find it very interesting and informative.

[Devlyn]

I believe this is the conversation that Shantel is referring to: https://www.susans.org/forums/index.php/topic,108501.340.html

[Shantel]

I believe this is the conversation that Shantel is referring to: https://www.susans.org/forums/index.php/topic,108501.340.html

Thanks Dev, that's it!

[Nero]

Northern Jane- I don't want to be IS, But both that, as well as my labia, are large. I had high T levels as a child, and worried what future partners will think of me.

Why is it more difficult to transition with an IS condition?

Well, from what I understand larger labia or labia that 'hangs down' is a natural variation. The clitoris could simply be larger due to higher T levels. Anytime you introduce or develop higher testosterone into the mix, the clitoris enlarges. This happens at any age to ftms, female body builders, etc. However, a larger clit than average can just be a normal variation. Like men, some women are larger than others.

Irregular periods could just be normal. I had those as well and my hormone levels were always normal as far as I know.
However, the fact you were on puberty blockers and the paperwork could point to something. Do you know why you were on puberty blockers?
If you're really curious, I would just ask your doctor.

As far as transition, I'm not sure but I think Jane means transition is more 'streamlined' for non-intersexed individuals. Because a diagnosis of transsexualism/gender dysphoria/whatever they're calling it these days precludes an intersex condition.

Diagnostic criteria[edit]

In the United States, the American Psychiatric Association permits a diagnosis of gender identity disorder if the four diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text-Revised, or DSM-IV-TR are met. The criteria are:
Long-standing and strong identification with another gender
Long-standing disquiet about the sex assigned or a sense of incongruity in the gender-assigned role of that sex
No physical intersex characteristics
Significant distress or impairment in occupational functioning, social functioning and other areas of life

If the four criteria are met under the DSM-IV-TR, a diagnosis is made under ICD-9 code 302.85. See the classification and external resources sidebar at right for other diagnostic codes for gender identity disorder.

The International Classification of Diseases (ICD-10) list three diagnostic criteria for "transsexualism" (F64.0):[10]
The desire to live and be accepted as a member of the opposite sex, usually accompanied by the wish to make his or her body as congruent as possible with the preferred sex through surgery and hormone treatment
The transsexual identity has been present persistently for at least two years
The disorder is not a symptom of another mental disorder or a chromosomal abnormality

Uncertainty about gender identity which causes anxiety or stress is diagnosed as sexual maturation disorder, according to the ICD-10.[16]

But there have been people on this board who have transitioned with an intersex condition.

[hazeofconfusion]

Not so fat admin- without giving too much away, it was to allow further growth development, so we artificially delayed the start of puberty, as I went into puberty very early as well. It allowed my body to get taller, and be mature enough for the start of puberty. Thus, it didn't start until I was 16 or 17.

I get that it is normal, physical differences, but why does it feel abnormal to me; that I think I look more like a guy then a girl? A type of dysphoria or denial of being female perhaps?

I understand that now, thanks.

[Nero]

I get that it is normal, physical differences, but why does it feel abnormal to me; that I think I look more like a guy then a girl? A type of dysphoria or denial of being female perhaps?

Well, you had high T, so you probably do have some more masculine features. And genitals are a very sensitive issue for most people. Anything even a little outside the norm down there can make someone feel abnormal. I knew a guy who felt that way because he thought his penis was too 'veiny'.

I wouldn't think it would be a type of dysphoria or denial. I don't think one has to do with another. You could be trans on top of whatever's going on with your body or not. Unless you really don't have gender dysphoria and just feel less feminine or something based on your body. If that's the case, then rest assured that there's a wide variety in female genitalia. I forget the name of the site, but there's a web site displaying the huge variation in vulvas. Anybody remember the name?

Anyway, maybe ask a doctor about it next time you're in stirrups. lol Maybe you'll feel better knowing whether you have an intersex condition.

[hazeofconfusion]

Thanks again not so fat admin, for the advice.

I don't think it is due to feeling less fem because I am not fem in any other way really, lol.  My gyno said they were larger as a child and now they are normal, my body and them just needed to catch up to one another? Something like that.

I can't ask my old dr, as I thankfully don't see them any longer, and records were impossible to get, let alone a return phone call.

I really need to think all of this over more.

[DCRat]

Not to hijack your thread but wow I just learned so much here by reading this.
I was a premie baby born in the 60s adopted at 9 months and have unusual looking female parts. I was give cortisone shots as a young child.
I had a very low voice and was always being asked if I was a boy or girl and generally taken as a boy. Puberty hit and my breasts never grew into normal looking ones. They look like man boobs, there is a difference in appearance at least I think.
I do believe I might be  CAH and not ever told this. My adoptive parents are long since passed and I know my mother had all my medical records destroyed for an unknown reason and I never dared to ask.
Wow I need to learn more about this.

[mac1]

Northern Jane- I don't want to be IS, But both that, as well as my labia, are large. I had high T levels as a child, and worried what future partners will think of me.

Why is it more difficult to transition with an IS condition?

Any partener who judges you poorly because of your large clitoris or labia is not worth having. Actually I think that a large clit could be rather interesting and cute. It might even provide for greater pleasure for both you and your partner.

[Jessica Merriman]

Read about CAIS as well. 

[Bunter]

I have a friend who has a variation of CAH and she stayed very small because she wasn't treated hormonally. She also has some male characteristics on her secondary sex markers. So this really sounds like some type of earlier onset CAH.
Also the cortison shots- but there are other possibilities as well, so you really need to see a doctor.
Not all types of CAH or related IS (there are rarer types) have the salt retention crisis. So not everyone would have to have constant medication.