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[jennielovesall]

Hi, my name is Jenn and I am a 20 year old lesbian/queer. I am not IS but my girlfriend is and I am trying to gain some knowledge to help me.

My background: I did research in high school on IS (i didn't finish the paper) because I feel that the lesbigay community does not incorporate IS and Trans people. I hadn't knowingly met any IS people until now, but my last GF had some Trans friends that I had met and talked to. My views on gender and sexuality are that of a non binary fluid type. ie. not just male and female, and not just lesbigay (i prefer the term queer for myself because it is more inclusive and doesn't limit my future or exclude my past).

My GF, we will call her Amanda, has CAH, and since she told me I have done more research on the subject, but I would like to know more. I was surprised by how I reacted when she told me... it didn't make any difference to me. I still have all the same feelings for her and don't think of her any differently than I had. The only thing I am concerned about is how to talk to her about it. All I know is that they thought she was a boy when she was born, but shortly after she had surgery and was raised as a girl. She takees medication to keep her hormones okay, and she jokes around about it with me (but most of her friends don't know at all). I don't want to ruin her trust so I haven't talked to anyone about this yet.

I would like any opinions, questions, and comments. I really just want to know more, and first hand is better than reading all the medical sites...

Thanks,
Jenn

[Sunshine1]

Seeking more information to process your request. Needing to know what exactly do you understand about CAH? But I will continue. Do you know this is a metabolic endocrine condition? Could you recognize or speak for your girlfriend in an adrenal crisis at the ER? THIS Information may save her life someday. Externally she looked like a boy with no male testes at all and on the inside she only has female sex organs uterus, two ovaries. Her surgery for better or worse was to match her genotype to her phenotype. She only has female chromosomes but in the bigger picture when it comes to other conditions and people without conditions chromosomes are not the judge of anything. Your friend has an adrenal gland condition that becasue of lack of cortisol from a defiency along the endocrine metabolic pathway she lacks the ability to make cortisol and thus had an excessive of adrogens that produced the male looking external genitals but also left her without enough cortisol in times of physical stress such as illness, operation or whacking your head on the wheel well of the back of an SUV after to much partying Whoops that would be me and my friends were able to explain adrenal insuffiency to the ER to help me stay alive.

Most with CAH fit into the female gender side and many with CAH aren't even interested in being incooperated into intersex and many people with Intersex conditons don't find it a good idea to be incooperated into the GBLT anyway and that goes for the people with intersex conditons that are all ready lesbians or trans. I think it's something like 37% of women with CAH are lesbians and 48% are heterosexual w/ the other 15% bi-sexual.



Aimee

[jennielovesall]

I don't think I know enough to be any good in an ER, but the more I can learn by reading and talking the better. From reading some medical sites, I've kind of come to grasp the general conecpt of what it is and how it came about. I also understand that the medicine she takes (starts with and F) is important and she could get really sick if she doesn't take it. I want to know the day to day types of things, or just anything that might help.

Thanks
Jenn P.

[Sunshine1]

These adrenal crisis links will help you understand more about the need for cortisones whatever one she is taking besides the florinef.

Acute adrenal crisis http://www.healthscout.com/ency/1/000357.html

AllRefer Health-Acute Adrenal

http://health.allrefer.com/health/acute-adrenal-crisis-info.html

You will be her voice when she can't and that is a friend. Knowing what to do about adrenal insuffiency is part of the day to day. Because then you can get to the next day.

Aimee

[jennielovesall]

Wheh, I read all that and more. I think I understand the jist of what could happen and what to watch for. Hopefully if I were to tell them what it is, adrenal crisis, then they would know what to do, and hopefully the information will never have to be used. Thanks, if you find antything else that I should know then let me know, I want to be well read in this, the more I understand the better. What I meant by day to day is just the regular obstacles that someone with CAH faces, not belittleing this at all, because it is definately important.

Thanks
Jenn

[Sunshine1]

Don't face any regular obstacles that are different than yours except I don't know anything about the lesbian part because I can't help it...I was born this way and no it isn't a choice but I like men. I do shop at places that fly the rainbow flag to show support.

With the adrenal crisis thing medical people often don't know and that is why I gave you those links.

Actually, I and many with CAH mightt not even face the same obstacles that you do either. The majority of us identify with the female gender want kids or have them with their husbands or partners of they are lesbians w/ sperm donor help.

Having an Intersex condition doesn't always mean androgenious person. You don't have any condition but seem middle of the road with gender and that is OK.

Aimee

[Betsy]

Hi Jenn,

I also have CAH as you may have surmised from reading stuff here. Unless it is a big deal for your girl, I'm not really sure it needs to be one in any other way either. I realize that sounds odd, but with myself, the medical issues and the gender/genital issues are very separate. While they are inter-dependent back when I was still in the womb and they profoundly shaped who I am today, my day to day living sees them as quite apart from eachother.

Sure...I make sure I take enough prednisone to stay alive and also to prevent myself from becoming a bearded lady but that's about it.

The health side of it is obviously my daily focus and concern. Aimee has been good at pulling stuff out of me regarding diet as of late and it's probably worth reading some of it(http://www.bodieslikeours.org/forums/showthread.php?t=1380&highlight=diet) if you think it may help. That thread was in direct relation to an adrenal crisis I had and posted about a month ago (here: http://www.bodieslikeours.org/forums/showthread.php?t=1358&highlight=diet)

My girl has been given a primer on how to give a cortisone shot if necessary. As long as you remember to shake the little jar first and use a new needle to suck it all into and then just jab the thing in her thigh or butt and push out the meds, you'll be fine. It sounds scarier than it really is. You can practice using a needle and water (or libation) and an orange. It feels pretty much the same way for the person giving the shot. If she is in need of a shot, the prick isn't going to hurt her.

As far as knowing when, it's hard to say. If she is coming across like she has had way too much to drink and hasn't been drinking, I'd say it's a problem. When I got ill last month, I apparently wasn't making much sense about much of anything. I was still somewhat mobile but was in obvious distress and I did manage a phone call to girl which set off all sorts of alarm bells for her. Ironically, we had only talked ever so briefly about the medical side--she knew I took meds, she knew it could be life-threatening but didn't know much about adrenal crisis at all and she figured it out really, really quickly and probably saved my life by not only getting me to the hospital but also knowing what to tell them and making sure she brought my meds with me. Once she said adrenal crisis to them, attention was given without delay. If you can be a good advocate for her, you will be fine.

As far as who your girl is, is it a problem? I know you are just trying and wanting to be helpful, but is help necessary? Body image and self-esteem are two big things that I encountered and unless she is taking the lead on it, it could be difficult to cross that bridge.

I would simply let her know that what her genitals are like doesn't make a difference to you and encourage her to enjoy them as much as she can and then by proxy, as much as you can. My girl and I have wonderful sex but while she never experienced my big issues with me, she knows the joy that has occured once I became comfortable in my own skin. Years ago (I'm saying this with my best sr. citizen voice here :rolleyes: ) when I was your age, I wasn't comfortable in my skin and had a horrible time becoming intimate with someone, much less having a meaningful relationship with anyone. If those self-esteem issues are not there, you'll likely be fine and if not, encourage her to talk and be comfortable in her body.

Jenn, hopefully this helps but if not, let me know. I'm fine talking about stuff that many would find uncomfortable to do so about so almost any question is fine and those that are not can be done via PM.

Betsy

[jennielovesall]

Thank you for your insight. I haven't talked to her much about the medical side of things, the stuff that I have been learning via here and my own online research, but when the time comes (right now we do not live near each other but I will be moving in August) I will make sure she tells me what to do in case of a crisis. I think she knows that I have been doing some research on top of what I already knew.

In regards to self esteem and body image, I think she is more comfortable with herself than I am with myself. To her it is just who she is and she doesn't really feel the need to tell people or talk about it at all. I take people at face value, I don't judge people or make opinions on them, especialy in regards to things they cannot control. She is who she is and it makes no difference to me, like I said my feelings haven't changed at all since she told me.

I must get ready for work, but I will read the links you put on here later.

Thanks
Jenn

[jennielovesall]

She hadn't been feeling well these last couple days and so she went to the doctor. She wasn't telling me what was going on because she didn't want to worry me. Which makes it more the reason to worry. So, last night I tiold her that I'd been doing research online and that I wanted to be knowledgable in case I was needed in an emergency. I was nervous to tell her this, not knowing what her reaction would be, but it was good. She told me more stuff to look... her medicines and that it is specificaly adrenogenital syndrome. so now I have more work to do. Thank you to all the information so far. If you pray, keep her in your prayers, she hasn't kept any food down in the last three days, and that includes her medicine.

Jenn

[Betsy]

it is specificaly adrenogenital syndrome

That's just another word for CAH. It's not used very often anymore.

[jennielovesall]

she's alright now... she had food poisoning... so it was a false alarm.

jenn