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des10ed2b
03-25-08, 11:31 AM
i guess it would be easier to share here then continue in the other post. this is what i wrote in the introduction post:

im new, but may as well introduce myself!

Im LeAnne, 22, married, mother of 1 and i have another on the way. i have a long history of miscarriage and reproductive problems and was told that i would probably never have kids. so now that i have had one, and i have another on the way, my focus has shifted to fertility issues to the health of my children. im in a lot of parenting groups on myspace and a girl was talking about her sons hidden penis today and while doing research on that to see how common it is and if it is genetic (my husband has cousin with it) i stumbled onto this forum. the intersex community is something that i have always been very curious about. not in a bad way. i support my daughter whole heartedly. if she came to me and told me that she felt like she was in the wrong body, i would totally support her having a sex change. im bisexual with a much stronger preference for women, and i know how hard that can be sometimes, but then add on that my genitals dont quite look "right" and it makes lesbian relationships pretty hard. im sure that i am not intersexed because of my ability to conceive and bear children, but i also know im not "normal" and that is hard enough. i can only imagine how it must feel to actually live with being intersexed. my daughter had a severe labial adhesion when she was an infant and had to be put on a hormone cream to help develop her labia into parting open, and that was hard on me.

i look forward to meeting all of you, and to learning more about this!

ok, in response to everyone. no, i am not sure at all if i am intersex. i know that my hormones have never really been "right" i started developing breasts very early and was teased constantly for it. i started my period years before my friends, and by the time i was in 8th grade i was in the ER with ovarian cysts that ruptured and left me bleeding internally. everything closed on its own and it was fine, but i was thrown onto birth control at 13 to regulate my hormones because they were so unbalanced. everytime i tried to get off of the pill my hormones went crazy, so i was on it for 7 long years. what i always found odd though was that i got pregnant while i was one the pill. 3 times actually. but they all ended in miscarriage (including one from when i wasnt on birth control) when i went to the hospital with my 4th miscarriage the doctors told me that after 4 miscarriages the likelyhood of me having a baby was very slim and i shouldnt count on it. i didnt have a problem getting pregnant, but i had a problem staying pregnant. the first 3 i didnt go to the doctor with, but my last one i did and the reason that the baby didnt make it was likely because my estrogen just didnt rise like it should. that is not for sure, no one can ever REALLY tell why the baby didnt make it, but we knew that was a problem i was having with the pregnancy. at that point i threw out the pills and said, "forget it. im not spending 35 dollars a month on a stupid pill that isnt working!" 4 months later my husband and i decided to date (we had always just been friends) and got pregnant the first time we had sex. thus our daughter was born.

my lower regions have always looked not "right" to me. i am bi-sexual. i prefer women over men (except my husband. i dont know why, he just does it for me) and ive been up close and personal with other womens parts and watched my fair share of porn movies and looked at mags. ive always kind of noticed that i just dont look the same. my lips just seem much bigger then most women's and my clit is hidden by a large hood, but when im turned on, its REALLY pops out and nearly doubles in size. sorry if that is TMI, just trying to give an adequate description. i noticed it wasnt right years and years ago. i became very shy about it and was very young and wouldnt let anyone do oral sex on me, or even look at me down there. just because i was afraid that THEY would comment that i didnt look like other girls. my husband now has never mentioned anything about me being different. he just says, "all girls are different." and leaves it at that. but even now, over 3 years later, i still shy away from him looking at me down there or going down there.

i remember when i was pregnant a few odd things happened. 1) my uterus is oddly tilted, thus making me look HUGE because my belly swells out instead of up 2)i was really prone to cervical infections that we just couldnt get rid of. so i was on partial bed rest the majority of my pregnancy

ok, now to my daughter. when i first went to change her diaper a few hours after she was born, i noticed that she has some tissue sticking out of her vagina. i called a nurse to come look and she said it was completely normal. it was just the folds inside her vagina and you could see them because cayla didnt have a lot of fat deposit. so i shrugged and said ok and sure enough, when she fattened up a little, you couldnt see it anymore. but then when she was a little over a year old she got really sick. we took her to the hospital, thinking she had a urinary infection and when they went to do a catheder, they found that her lips had grown together and she only had a tiny pinhole below her clit that her pee was coming out of. usually they cut that open or tear it open by grabbing either side and ripping, but her pedi is female and didnt want either done. so we put her on a hormone cream that made her lips puff up and we just had to gentle stretch the area a few times a day and in a couple months she was open and looking completely normal. she is a happy healthy little girl. but like i said before. i dont believe in gender reinforcement, i want her to be whoever and however she wants to be. she loves to put on dresses and paint her nails, but she also loves to take out a hockey stick and ball and go to town playing sports. i love it, i love her, i would never try and make her into something she wasnt!

anywho. lol. thats me, thats my story. what do you all think? lol.

Kailana
03-26-08, 10:39 PM
We'll, can't really give a diagnosis. I am not a doctor.

But, could be CAH, It would explain the hormone imbalance, and your anatomy, your daughter's too. I would like to know if you happen to have nuckle, elbow, knee, or ankle bruising? Basically, looks like your nuckles are dirty: small pattern of discoloration darker then the rest of your skin. On your ankles, would be on the outside of your ankle joint, the bubp/know that sticks out to the left and right. Or do you have any issues with some heavier facial hair? Not that women don't get facial hair, but what I mean is some areas on your face where the hair is coarser then the rest. Did you also finish puberty early too? Because that is also common with teen girls, with CAH, they start puberty earlier, and stop growing sooner. All of this is just a guess.

Or could just be that you have polycystic ovaries, or that your earlier pregnancy's were ectopic pregnancy's and ruptured your phelopian tube, but you were told it was your ovary that ruptured. Many women have ectopic pregnancy's, most lead to self-termination of the fetus.

This is just a guess on my part. You might wait and see what some of the other CAH-women think. Although, if you can, check for the darker skin on your nuckles, elbows, knees and outside ankle. Those bruising spots, if you have them could hint at CAH, without having to go to too much trouble with getting testing done. If you do have the nuckle bruising, then perhaps that might be something you can talk with your doctor's about, and if so, you might think about getting a Cortisol stimulation test, and finding out if it is indeed CAH. Also what form of CAH.

thanks again for sharing.

des10ed2b
03-27-08, 12:20 PM
no, no knuckle bruising or facial hair. nothing like that. i seemed to finish puberty about the same as other girls. i just had a much longer run at it. what ruptured was just the cysts, not the ovary itself. i remember well because i was still a virgin and after they did an ultrasound they saw both ovaries but lots of dark fluid around one where it ruptured. ive had a few of them. i dont know why my hormones have always been so off. its really odd. lol, im not asking for a diagnoses. im fine with who i am. just not always with how i look. but thats fine. i dont really have anyone to impress!

fraulein_Maria
03-28-08, 02:55 AM
[QUOTE=des10ed2b;14606]no, no knuckle bruising or facial hair. nothing like that.

>>> i'm one of many CAH's with no facial hair.... we are easily missed. what is more telling is the pattern of hair growth. Does your pubic hair run down your inner thigh somewhat? does some seem to come upwards in a line towards your belly? do you have any around your nipples? do you have any around your anus? is your hairline receding at all? extra testosterone does that.

And if i hear about one more CAH woman getting pregnant on BC pills, i'm gonna scream!!!!!

why don't these doctors wake up? you could call the first time a fluke, but more than once is not you being irresponsible (that's what those SOB's are saying behind your back) but something so common to CAH as to be laughable. <<<

des10ed2b
03-28-08, 11:06 AM
[QUOTE=des10ed2b;14606]no, no knuckle bruising or facial hair. nothing like that.

>>> i'm one of many CAH's with no facial hair.... we are easily missed. what is more telling is the pattern of hair growth. Does your pubic hair run down your inner thigh somewhat? does some seem to come upwards in a line towards your belly? do you have any around your nipples? do you have any around your anus? is your hairline receding at all? extra testosterone does that.

And if i hear about one more CAH woman getting pregnant on BC pills, i'm gonna scream!!!!!

why don't these doctors wake up? you could call the first time a fluke, but more than once is not you being irresponsible (that's what those SOB's are saying behind your back) but something so common to CAH as to be laughable. <<<

now, some of that sounds more familiar. i wouldnt say that mine exactly runs down my leg, but i do notice that on my inner thighs i do get a few, just 4 or 5 dark hairs that are the texture of pubic hair, and the same thing near my belly button. no hair running up to it, but right below my belly button i get 3 or 4 dark thick hairs. i just pluck them out with tweezers. i dont have any dark hairs around my nipples or anything. i have noticed an occasional chest hair that is very long, but its blonde, so you can only see it if the light hits it a certain way. again, i just pluck it out. does it make a difference with leg hair or anything? the hair on my legs is so thick and coarse. i have to shave atleast every other day because its thick like a beard. my brother always used to call me "pines" because he said it was like pine needles. its just always seemed very odd to me because im blonde.

trust me, i know. i was always told that i got pregnant on the pill because i forgot or missed pills. which is true. a couple of the times i did, but it was only a pill or 2 pills. which i doubled up and got back on track. all the info i read said that if you miss a pill you are just supposed to take 2 the next day to catch up and you'll be fine. or if you miss 2 pills then take 2 the next day and 2 the day after that and then your all caught up. i just figured it was me. but the last time i got pregnant i did NOT mess up my pills. i am sure of it. i had gotten really anal about it at that point. what exactly is CAH?

Kailana
03-28-08, 01:24 PM
CAH=Congenital Adrenal Hyperplasia.
Congenital= means your born with it, or it is present since birth.
Adrnal= adrenal glands, could be one or both, the little bity melted hershey's kiss shaped organ that sit's just about your kidney's.
Hyperplasia= enlarged growth of, meaning an enlarged adrenal gland which ends um making more or less of some hormones. For women overproduction of Testosterone, tends to be the big one that can single CAH. But there are alot of other hormones that the Adrenal Glands produce. Generally for most of those, if a person's adrenal glands are overproducing one hormone another tends to be underproduced. Though not always. There are alot of known variations when it comes to CAH. I wont post those as I don't really have a good link on hand. You might check the CAH thread, Sunshine tends to post links for CAH information.