Community Conversation > Intersex talk

Congenital Adrenal Hyperplasia? Intersex Resources?

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NotSoNew:
Hello all, I have not received a diagnosis of any intersex conditions, but I have suspected it for most of my life.
I would often read that you cannot be intersex if you've ever experienced menstruation, but I've recently learned that isn't true, so I'm starting to lean more and more towards thinking this might be my case.

Specifically, I believe I might have non-classical Congenital Adrenal Hyperplasia. Unfortunately, there is not a lot of reading around, and forums for intersex people are often basically a ghost town. I would love to talk to people, and I would also love any resources anyone might have, so please feel free to share anything you might find helpful!

What leads me to believe I might have CAH:
-I am a transman, and have always felt misaligned with my birth gender, even at 5 years old.
-When I was born, I suffered from jaundice, and I was covered head-to-toe in body hair (and more head hair than most toddlers!). My parents act like it was just temporary stuff I went through in my very ugly duckling phase of being a newborn, but with a lifetime of health problems, I hardly think of it as coincidence.
-I started a male puberty at about 7 or 8 years old--meaning, I did not develop breasts or a period at the time, but instead I grew all-over body hair (like, full-grown, ADULT body hair). I grew facial hair similar to that of a menopausal Italian woman. Also, my sexual urges began years before this, and only got stronger over time. I did not experience a female puberty until age 12.
-I had started having severe issues with menstruation in about 10th grade, and all signs pointed to PCOS, endo, etc. I was never tested for these, but accidentally discovered tiny ovarian tumors a few years ago. I don't know exactly what's going on down there, all I know is, it's a mess.
-I have always had more androgynous features. My shoulders and ribcage are rather wide for someone my petite size, I've always fit the average male shoe size for my height, I've suffered from male BO and perspiration, I've had a masculine/androgynous voice most of my life, and I have a cute little Adam's apple (small enough it's not a striking feature, but big enough that all my ex's felt the need to comment on it). Oh, and I've always had the voracious appetite of a growing boy.
-I always just "felt" infertile, so I would never worry about birth control. I had a LOT of sex in my late teens/early 20s, with multiple partners, but only ever had one pregnancy scare. Turns out, I am pretty dang infertile.
-I had to stop my hormones a few months ago, due to costs/lack of money. Yet, my body is still not fully "acting female" again. My body has always seemed to kind of align its gender with things happening to my body, and, as I'd suspected, the high levels of T seem like they've raised my internal T back up (hormonal birth control as a teen seemed to kill my naturally high T levels). I know it can take time for the body to readjust to hormone changes, but that has not been the case. I've always found this aspect strange, but it's also slightly comforting to know that my body adjusts so well to new hormonal environments. A short period of hormones seems to keep my body in check for quite a while.

My lifelong health problems:
I have recently been diagnosed with Lyme's (discovered myself, doctor's testing confirmed). There is a good chance I've had it for up to 25 years (I grew up in the woods, and my parents usually refused to take me to the doctor's to the point I would absolutely consider it child abuse). So a lot of the symptoms are Lyme, but they can also overlap with CAH. Such as my absolute lack of an immune system (I was sick with flu symptoms every single month of my life growing up). My chronic fatigue has been a big player in my life, and even as a young kid, I didn't have the stamina to play like the rest of the kids. As an adult, it can be absolutely crippling (a few years ago, it literally left me bedridden, the only time I could get up was to use the bathroom). I've also had a horrible time dealing with stress throughout my life, and it obviously affects me much more strongly than other people.

That all being said, I've also started fainting since last year, and it seems like that might also be a symptom of cortisol levels being off. I have looked through all my blood test results from the past few years, but I don't see anything on them that would appear to be cortisol levels. Is this hormone commonly tested? What type of doctor would be able to send me for testing?

I know a lot of this seems crazy, but I keep coming back to the idea of intersex conditions, and it's about time I figure out for sure what's going on so I can try to get well. Sure, a lot of these symptoms can be brushed off as other things, but so far, this is the hottest lead to explain my very abnormal puberty, and the fact that it can also explain a lot of my health symptoms is too coincidental.

I'm hoping some of you have some insight to share, or reading you can forward me, but at the very least, I hope my story/situation was an interesting read. Thanks for your time!

Celica:
Hi NotSoNew,

I know you posted this several months ago. 

I just joined today and wanted to respond to you.

When I was accepted into the Gender Program, the endocrinologist commented to me that he thought I had CAH.  It would explain the high levels of androgens I had, along with various physical attributes.

The endocrinilogist I had seen for other health issues (prior to entering the gender program) said he did not "like" the fact I was so masculinized.  Unfortunately, he was the sort of "doctor" who lived by the doctrine of "do as I say" and "don't ask questions." Anything he didn't like or didn't want to discuss was to be ignored.  Suffice it to say he did a lot of harm to me, trying to make me what he thought I was, rather than providing the opportunity for me to discuss with him how I felt, and how I had always felt.

I was infertile, though I cannot say it bothered me. 

My feet were always considered "wide," and shoes for males always fit better.  They looked better (to me), too.  Unfortunately, I was forced to wear certain clothing items.  I didn't have a choice.

Having the unnecessary organs removed revealed I had tumors - ovarian, if I recall correctly. Almost a half dozen were visible without a microscope.  They stopped counting  after a hundred. 

I didn't go through puberty until I was fifteen, though I had hoped it would be later, if it had to happen at all.  There was nothing "normal" about it, nor for the years that followed.  I didn't have much in terms of chest development, not until that first endocrinologist began "treating" me.  He put me on female hormones and I thought I was losing my mind.

Even though I was 21 at the time, one of the diagnoses he gave me was androgenitic alopecia.  I began losing my hair when I was 17, though it was so incredibly thick, it wasn't noticeable.

I had been told I had "over active" adrenal glands, and that I needed to "reduce my stress." Not advice easily followed when one is in college and is working, along with other stressors I do not care to disclose at this time.

Being on testosterone has been so natural for me, especially after having that first endocrinologist make a bad situation worse.  Nothing in my life has felt so natural and so healing.  Where some have commented about experiencing anger / rage, it reversed that for me.  Some have also commented about having labile moods.  Again, for me, testosterone has smoothed things out.

Fast forward a number of years - I have adrenal insufficiency.  My current endocrinologist thinks it is the result of having received a type of treatment for another problem, but it doesn't make sense.  I have been off the steriods (NOT HRT) for more than long enough for the adrenal glands to have recovered IF there hadn't been an underlying adrenal condition.

I have had an MRI of the pituitary to rule out a tumor, which could also cause the adrenal insufficiency.  Because cortisol tests were never performed when I was 21, or anytime before the current diagnosis, I will never know how the adrenal glands were functioning, or malfunctioning.  I do know when that endocrinologist made that comment to me, he never gave me any suggestion that CAH may have life-threatening repercussions.

As for having your cortisol levels checked, your PCP can do that, but the best physician for you to see is an endocrinologist.  This is not a test commony performed, which is why you may never have had it done before.  Also, the endocrinologist gave me the ACTH challenge test.  They take a baseline blood level, administer an injection and then draw blood again at 30 and 60 minute intervals. 

As he put it, I failed the test "miserably."

Even though I am on cortisol replacement therapy and the cortisol levels are fine, I am always fatigued.  Well, "fatigued" is a bit of an understatement.  Some days I can't get out of bed.  Seemingly small levels of exertion - going to the store, mowing hte lawn, doing laundry, baking, etc., can knock me off my feet for as many as three days.  It isn't that I am simply "tired," or that I don't feel like getting out of bed.  It is next to impossible to get out of bed.  If I do have to get up, it is almost more than I can do.  It takes a lot for me to not chastise myself about it, and my therapist keeps reminding me of how I need to be more "accepting" of the things I can and cannot do on any given day.

For someone who used to make the Energizer Bunny look sedate, this is a big change for me. I hate it.

You are far from "crazy."

NO one knows you better than you know yourself. Unfortunately, there are few physicians who are willing to listen, particularly if they do not know you well, or are of the mindset that they know more than you do and that there isn't room for communication.

I hope you are able to find an endocrinologist with whom you can feel comfortable. It has taken me a while, but I found one with whom I can not only discuss my medical situations, but with whom I was able to make other disclosures.

Some endocrinologists will tell you they have a waiting time of up to a year to see them for an appointment.  I went through that with the next to last endocrinologist I saw and, believe me, he wasn't worth the wait or the time it took me to drive there. 

The endocrinologist I currently see was able to give me an appointment within a week of my calling - that is, prior to the current health situation.




Celica

Northern Star Girl:
@Celica
Dear Celica
    Please know that I am not trying to hijack your post but first I wish to Officially Welcome YOU to Susan's Place.
    I am happy to see that you have signed up as a member of Susan's Place and have submitted your first several postings. 

    As you post here on the forums you will be able to exchange thoughts and comments with others that are experiencing many of the same things that you are.
 
    This is the right place for you to be to find out what others may have to say.
 
    I want to warmly WELCOME you to Susan's Place. 
You will find this a safe and friendly place to share with others and to read about others similar trials, tribulations, and successes.

    As you are certainly aware you can share with others and involve yourself with some give and take with other like-minded members.  When frustrated or if you have successes you can share it here if you wish and receive support from others and offer support to others. ....
     ***There is a very good chance that you might find that you will make some new like-minded friends here. 

    Please come in and continue to be involved at your own pace.   Other members will be along shortly to give you their thoughts about your questions and concerns that you mentioned in your very first posting.
   
    There is information and important LINKS that I have included below.   You will find information about the site that will help you navigate around and best utilize the features here.   
Please look closely at the LINKS in RED, answers are there to many questions that new members ask....

Again, Welcome to Susan's Place.
Danielle

Here are some links to the site rules and stuff that all new members should be familiar with:
 
Things that you should readSite Terms of Service & Rules to Live ByStandard Terms & DefinitionsPost Ranks (including when you can upload an avatar)Cautionary NoteReputation rulesNews posting & quoting guidelinesPhoto, avatars, & signature images policyMembership Agreement

Northern Star Girl:
@Celica
Dear Celica:

OH, and another thing....
If you feel so inclined please feel free to stop by the Introductions Forum to tell more members about yourself!
 
With more exposure to more members here you will be able to get more responses to your questions and concerns.

Wishing your well as you continue to be involved in the forums.

NOTE: Now, after all of this Greeting and Welcoming stuff, I will give you and other readers the thread back so that the conversation can continue

Again, Welcome to Susan's Place.
Danielle

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