Looking for XX CAH Men

[RGMCjim]

Hi Everyone,

I'm a long time member of BLO (years & years). For those who don't know me, until I was about 40 I thought I was a partially developed male and had been referred to as being a pseudohermaphrodite and intersexed as a result of being exposed to progestin before and into my Mom's pregnancy with me. Neither I nor my parents really knew what that meant. I have a tiny hypospadic penis and no testicles and had no apparent vaginal opening. I was raised as a boy.

At 44 I had my first real medical workup to find out what my body contains and what my chromosomes are. That's when I found out I'm XX and have ovaries and a uterus that doesn't/cant' work and that I have a vagina that just had a closed over opening - easily fixed. The next year I got a referal to a new Physician who reveiwed my health records and realized I must have CAH too. Since learning I have CAH other family members have asked if their health problems might be a result of it too, and it has turned out to be the case. I've got a lot of health problems that have been shown to be related to CAH.

I'm looking for other XX people with CAH who were raised as boys and given testosterone to induce male puberty like me, or who started with an assignment of girl but later switched to boy/man, or who are questioning their assignment as girl/woman and are considering switching to man. I've met a few and figure there must be more of us.

Jim Costich

[Priestess]

Maybe you should also try asking at www.congenitaladrenalhyperplasia.org , they're very active there and I'm sure someone would reply.

If I may ask, what sort of CAH did your doctor diagnosed you with? There are a variety of particular deficiencies and severities.

Actually, I was also curious about how you never suspected a problem; because in my own life I've had a lot of weird pelvic sensations, mostly of wetness and cramping and pain. And then there's the whole impotence thing, because an XX pseudo-herm will always have that no matter how much testosterone they have or take. These things spoiled any illusions of normalcy I might have had for myself, even aside from incidents after gym class. And yet you mentioned that at one point you were married, and the both of you never noticed.

I hope these questions aren't uncomfortably close, and they aren't intended to be as confrontational as they're forced to sound. But sometimes I have trouble putting myself into other people's shoes. And the answers grant a bit of wisdom.

[yann]

Kia ora
I wouldnt worry what you ask jim boy.
he is notorious for talking about sex and his body functions.. no modesty at all. grin.
But, Priestess.. Im curious about youre comment on Impotence..
are you talking about ejeculation or sperm or erectile ability.
Impotence is this country relates either to being able to "get it up" or the ability to empregnate another..
of course the latter is impossible for almost all herm people.. but erection isnt a problem.
even me... XX herm transguy with childhood reductive surgery.. is able to get erect.. its one of the reasons I transed.. to see if I could undo my childhood surgery in anyway.
shalam yann

[Priestess]

(Well, no response from Jim after 3 days)
Sholem aleykhem, a fargenign aykh tsu kenen

If you are curious about my comments, I will explain. I was going to pm you, but that option isn't available.

Jim's call for XX men doesn't really apply to me, for various reasons. Besides being born with 90 percent of a female reproductive system, there was also 50 percent of a male system. And while that might put me pretty close to being a "true" hermaphrodite ... to answer your question about why I mentioned impotence, that is because I was always 100 percent lacking in "male" functionality in both the categories you defined.

And despite my parents giving me a little infant surgery and a whole lot of lies, I noticed there was something wrong by the time I was a teenager. Of course, my father didn't coach me on how to avoid locker-room encounters like Jim's did, he didn't persuade me to start using testosterone either. So that's where my life and Jim's stopped running parallel courses.

When I was 25, and my never-supressed female organs started working, that's when I knew for sure that something was really wrong. All those sensations ...

So I was curious about Jim's life experiences, because logically it seems as though he should have had some clues that things were wrong. Of course, logic seldom applies.

[RGMCjim]

Hi,
I got busy and haven't had a chance to keep up with my emails.
Actually, I've had nasty health problems associated with CAH all my life but because I wasn't checked for it (could they do that in 1957?) it was never attributed to the CAH. I had seizures as a baby which my doctor now says could have been the result of minor adrenal events. I've had anxiety, depressed immune system, hypoglycemia that eventually turned into diabetes, episodes of adrenal exhaustion, and extremely high levels of salt in my urine and sweat (to the point where I have to drink gatoraide when I exercise to keep from getting sick from salt loss) all my life due to what my doctors called "hyper-adrenalism". It's just that no one knew that there might be a unifying cause for all this stuff and that it might be the same thing that made my genitals ambiguous until last year.

My current doctor told me I've got "classic CAH". Both my Mom and Dad have some of the same things I've got, and so do other relatives. I just read that there is a high incidence of polycystic ovarian syndrome in people with CAH and in CAH carriers. My mother, and 3 of my nieces have it. My Dad has all kinds of adrenal gland related problems and both my parents and one of my brothers have anxiety. My Dad is getting tested for CAH. My mother is estranged so I'll never know about her, but I've no doubt she either has a mild case of it or is a carrier because she's got a lot of symptoms that both carriers and the affected have according to my Dr. and what I've been reading.

I didn't have female puberty. At the time they started me on testosterone at 15 or 16 (don't remember) they said my natural levels were in between normal for male and female. They used that to determine how much I should take every month to put me in the normal male range. They didn't test my estrogen levels. When I had my work up for intersex my testosterone levels were perfect for male, (so my dosing was right) and my estrogen levels were low normal for female. They told me that my high estrogen levels were protecting my heart but weren't high enough to feminize me so I had the best of both worlds. Testosterone is necessary for erections in males AND females. I've never had trouble with erections, or orgasms and I have a high libido. But despite having a prostate my ejaculate was always small and as I've gotten older has disappeared altogether.

I didn''t know I had a vagina until 5 years ago. I had had changes in my genitals in part due to a horrible outbreak of herpes. Where I'd been fused became "unfused" (I didn't understand that at the time, I just knew something was wrong), and I was having urinary pain and felt like I was tearing between my legs when I sat. I asked for medical help and that's how I got the workup for intersex. They found a very thick, imperforate hymen which they opened and had me work on with dildos of increasing size. Then they educated me in the care and feeding of vaginas because I knew next to nothing, and mine wasn't like the few I'd known. What they told me was that because I had never had female puberty my vagina was immature and would stay that way. It doesn't lubricate, it doesn't elongate when I'm aroused, the mucosa is thin and is easily injured and I don't have the kind of protective bacteria or "self-flushing" system women have. I don't have any more awareness of it being there now than I ever did. To use it for sex I have to use lube and often have to add more. It is incredibly sensative to penetration by anything and has added totally new dimension to orgasms. My sex therapist says that is common for only about 25% of females and is probably because my "g-spot" is also a "p-spot". I won big time. Kind of makes up for not having had access to it until I was 44.

Anyway, that's probably WAY more than you wanted to know but I'm trying to give an idea of what my body has and does.

Jim

[RGMCjim]

Hi,
I got busy and haven't had a chance to keep up with my emails.
Actually, I've had nasty health problems associated with CAH all my life but because I wasn't checked for it (could they do that in 1957?) it was never attributed to the CAH. I had seizures as a baby which my doctor now says could have been the result of minor adrenal events. I've had anxiety, depressed immune system, hypoglycemia that eventually turned into diabetes, episodes of adrenal exhaustion, and extremely high levels of salt in my urine and sweat (to the point where I have to drink gatoraide when I exercise to keep from getting sick from salt loss) all my life due to what my doctors called "hyper-adrenalism". It's just that no one knew that there might be a unifying cause for all this stuff and that it might be the same thing that made my genitals ambiguous until last year.

My current doctor told me I've got "classic CAH". Both my Mom and Dad have some of the same things I've got, and so do other relatives. I just read that there is a high incidence of polycystic ovarian syndrome in people with CAH and in CAH carriers. My mother, and 3 of my nieces have it. My Dad has all kinds of adrenal gland related problems and both my parents and one of my brothers have anxiety. My Dad is getting tested for CAH. My mother is estranged so I'll never know about her, but I've no doubt she either has a mild case of it or is a carrier because she's got a lot of symptoms that both carriers and the affected have according to my Dr. and what I've been reading.

I didn't have female puberty. At the time they started me on testosterone at 15 or 16 (don't remember) they said my natural levels were in between normal for male and female. They used that to determine how much I should take every month to put me in the normal male range. They didn't test my estrogen levels. When I had my work up for intersex my testosterone levels were perfect for male, (so my dosing was right) and my estrogen levels were low normal for female. They told me that my high estrogen levels were protecting my heart but weren't high enough to feminize me so I had the best of both worlds. Testosterone is necessary for erections in males AND females. I've never had trouble with erections, or orgasms and I have a high libido. But despite having a prostate my ejaculate was always small and as I've gotten older has disappeared altogether.

I didn''t know I had a vagina until 5 years ago. I had had changes in my genitals in part due to a horrible outbreak of herpes. Where I'd been fused became "unfused" (I didn't understand that at the time, I just knew something was wrong), and I was having urinary pain and felt like I was tearing between my legs when I sat. I asked for medical help and that's how I got the workup for intersex. They found a very thick, imperforate hymen which they opened and had me work on with dildos of increasing size. Then they educated me in the care and feeding of vaginas because I knew next to nothing, and mine wasn't like the few I'd known. What they told me was that because I had never had female puberty my vagina was immature and would stay that way. It doesn't lubricate, it doesn't elongate when I'm aroused, the mucosa is thin and is easily injured and I don't have the kind of protective bacteria or "self-flushing" system women have. I don't have any more awareness of it being there now than I ever did. To use it for sex I have to use lube and often have to add more. It is incredibly sensative to penetration by anything and has added totally new dimension to orgasms. My sex therapist says that is common for only about 25% of females and is probably because my "g-spot" is also a "p-spot". I won big time. Kind of makes up for not having had access to it until I was 44.

Anyway, that's probably WAY more than you wanted to know but I'm trying to give an idea of what my body has and does.

Jim

[yann]

priestess,
you said..If you are curious about my comments, I will explain. I was going to pm you, but that option isn't available.

yes, I can be hard to get hold of. I live on the other side of the world and on top work impossible hours. Thus its hard to have a more 'normal' conversation with me. Then, if Im not here , I live in rural India with no electricity and no landline or computer.. but walk 7km to town once a week, praying the cafe will be open... lol. Thus, I just pop into groups as i can usually when others are asleep or exist on person to person emails. such is life.
Thanks for the info..the sharing. i learnt something.
regards yann

[Priestess]

Yann,
By PM I meant private messages here on the forum, so that it only goes to you instead of the whole world. You appear to have that option turned off in your control panel settings.

Jim,
I wouldn't call that too much information. It answers my questions. Apparently the difference in sensations that we've experienced relate to our having different causes for our similar/parallel birth anatomy.

I have suffered from adrenal symptoms as well, but of a different variety. Not over-virilization; the opposite, hormonal starvation. The female sub-system is definately not infantile.

But different causes bring about different consequences. So it's quite logical I suppose. One size doesn't fit all.

When I contacted Milton Diamond last fall, he said he'd seen a lot of cases identical to mine. Unfortunately, those cases can't be found in the medical literature I've searched through. This has all gotten disheartening.

[RGMCjim]

I've come to realize that our most serious issue as intersexed people is inadequate health care. The medical profession is pretty clueless about how to figure out how to address our unique enodcrine problems and help us lead the healthiest lives we can. That was never and still isn't where the emphasis has been.
Instead the medical profession's focus was on making us disappear. Even though I wasn't in the hands of the gender police with their phallometers and scalpels it was still what my parents encountered. It was rife with homophobia and sexism but VERY lean on relevant medical care. It still is!!
I never needed anyone to try to figure out my gender for me, or to tell me what I would have been if I weren't what I am. What the fuck is that? I needed help getting normal adult hormone levels for MY HEALTH. I needed to know I had CAH and for someone to give a shit about my abnormal adrenal problems. Not to measure my pee-pee and then try to sell me a phalloplasty and tell my parents that unless they did it no one would ever believe I'm a real man. So many intersexed people have horror stories to tell and they all involve the same thing - the medical profession sticking their noses into our crotches and refusing to do MEDICINE.

Jim