Laura's story

[Laura Robison]

Hello everyone,

My name is Laura. I was a DES baby, so it's possible that has something to do with my problems. My sister-in-law who is an RN told me that she found out that my mother had taken DES when she was pregnant with me, and I was shocked when I learned what DES was, and it's effects, but it explained a lot of things. My mother had a congenital birth defect that made it difficult for her to conceive, and there was fear that she wouldn't be able to carry me to full term. She had to have me by cesarean section because of that. As far as I know I had a normal birth and there was nothing unusual about me externally, but I had a scar on my penis that I thought was caused by a mistake during circumcision, and some marks that I can't tell if they are scars or not on my groin.

I am 61 years old and had SRS in 1977, just before my 30th birthday. I would have gotten my surgery sooner, but I didn't know there was help available, or that there were other people like me until I saw an article in a magazine about transsexuals sometime around 1974. I have been married for 19 years to a wonderful, understanding man.

I have known that I was a girl for as long as I can remember. I was a big disappointment to my father, and was never the son he wanted. I acted too much like a girl for him, and he would constantly "correct" the way I stood, the way I held my arms, just everything about me. I was never allowed just to be myself. I remember crying myself to sleep at night so many times, just soaking my pillow. I just wished I had never been born. I prayed to God "I'm a girl! Why did You do this to me? Please give me a girl's body and be raised as a girl when I wake up".

I used to blame myself for not having told my parents that I was really a girl, but I was terrified of my father's reaction, and he used his leather belt on me quite often so I knew what would happen to me if I said anything like that to him.

My life before my SRS was full of misery. I was something of an outcast, I looked feminine (which I was happy about but it made my life more difficult), and never fit in with anyone. I isolated myself from people and contemplated suicide many times. I actually attempted it once and took an overdose of aspirin. All it did was to damage my hearing so that now I have a permanent ringing in my ears. I had decided at an early age that I would never marry, and was celibate until after my corrective surgery. I just had no libido so I was never interested in sex.

Nature has been kind to me in limiting how masculine I looked. I am just under 5'7", and my face was not affected by testosterone during puberty, so I always looked feminine. My voice did not deepen much, and I only needed a few hours of electrolysis to remove what sparse facial hair I had. Most of it stayed the fine peach fuzz like on a genetic woman. I never had any body hair, and never developed underarm hair, and have sparse pubic hair. I never developed a libido and just never had a sex drive. Also during puberty, I developed wide hips, and I had some breast development which thrilled me, but it was embarrassing at the same time, and I had to hide it all the time. I guess that during puberty my body didn't know which way to go, and I looked more like a girl than a boy. I must have been producing estrogen somehow. I don't know how significant this is, but my testicles were small, and would spontaneously go up inside me.

Something that's really significant to me is that when I was recovering from my SRS, the surgeon told me that when he was creating my vagina he discovered something unusual where my vagina would have been, and he said jokingly, that I had tried to make his job easier. It wasn't made clear to me if it was a vestigial vagina or just an open space. I was still recovering from the anesthesia and didn't ask any questions about it. I guess I was shocked speechless. I wish I had asked more questions when I had the chance.

I don't know if I'm intersex or not, and I've never been diagnosed, but I really suspect I am. I'm thinking now that I might also have PAIS. My mind is full of questions about myself, and I sure wish I had some answers. I hate the uncertainty.

It seems like my story is a confusing puzzle, and I'm not sure what parts of it are significant or not. My life has been a long process of self discovery, and it's still continuing.

Laura

[Peter]

Welcome to BLO. Thanks for sharing your story. I believe that any father who whips their child with a belt, for displaying what the father considers to be non-conformity, should serve prison time. Good luck with sorting things out. I recommend that if you believe that you may have an intersex condition, such as PAIS, that you seek a medical diagnosis from a health care professional. This forum can help with emotional issues involved with being intersex, but cannot provide a medical diagnosis.

Peter

[Laura Robison]

Hi Peter,

Thanks for your comments. Those were bad days back then, and even after all these years, the pain is still close to the surface. I know it's impossible to get a diagnosis here, but I am grateful the emotional support.

I'm thinking about seeking some medical help. I have no idea of the cost of the testing I might have to have, but I can imagine that it would be expensive. Telling all of that to a doctor is going to be pretty traumatic, and I have no idea about how they would react to me afterwards. It reminds me of when I first tried to find a doctor who would prescribe hormones for me. It wasn't an easy time. This is going to take some courage to get this started.

Laura

[marlena]

Welcome Laura, your story very interesting

[Kailana]

Not sure how well any of us can helpthough would think that Lisa might be a better person to talk too, she has several posts in the DES forum/thread.

thats my limited advice for now. too many possibilities when intersexed conditions are not known. Just be carefull as several members are not so fond of Transsexual men and women who post when "they think they are intersexed". Which is a shame but unfortunately many do not understand why such comments are offending.

Most of us have a long medical history that makes it pretty damn obvious that we are indeed intersexed. Sometimes a new member will have just found out their dx but it really is not that common for someone to Transsition first then go looking for a diagnosis. Now in your case their may be answers that are findable. If PAIS then at least that is testable.

can I ask what you would think if you were not found to be PAIS? or for that matter any known condition at all?

Have you bothered looking for your own medical records ie birth and early years? Their may be answers out there somewhere if you look for them.

I would think that some possible conditions, or their result of having them,would of been erased with Reassignment as you have chosen to do.

I also hate to ask, but Is it really that important to know if you have an intersexed condition? This is one of those byte me in my foot questions.Sp really hope you won't mind answering. Example: I get asked this alot, and it usually just pisses me off, as I am Intersexed and general do not identify as a Transsexual person. Many within the TS community understand to transition from one gender to another as Transsexual. I have an issue about going back to a gender I allready had, while not a perfect specimen, girl that is, i am still a not a male, so will always be not a male. hope that was a little confusing. Now I know at times i have identified many different ways throughout my life, but I do know that my interesexed conditions are what really made my life difficult.

That is what I am wondering about with you? Are you happy now as a women, transsexual or otherwise, and would finding out that you do not have an intersexed condition affect you drastically? I asked this question because I have had a lot of idiot doctors assume I did not know what I was talking about with my own diagnosis's. They jumped to conclusion's that I was making crap up, which is down right cold when my Dx's nearly tore me apart.

I am hoping you are ok, either way, and if you can becarefull. There are many members here on BLO, me encluded who are not so Trans friendly when it comes to intersexed conditions.

best wishes always.

[Laura Robison]

Hi Kaliana,

I think I can understand your feelings about transsexuals coming to the forums trying to claim to be intersexed. You might call them intersex wannabes. I hope I don't come across like that. A lot of my story is taken up by the transsexual stuff, because it was a big part of my life. I am very happy as a woman now, and very content about my identity in that respect. This isn't about trying to find reasons why I was a transsexual.

I'm sure that if I hadn't been transsexual, and had a normal male psyche, I would have pursued this line of questioning much earlier in my life. I know the facts of my puberty would have been extremely uncomfortable for me if I had thought like a normal male. I was developing more like a female, and I'm sure I would have wanted my parents to take me to the doctor to have tests done to find out why, and we would have sought out treatment to reverse or minimize what was happening to me if that was possible. As it was, I became secretive about what was going on with me. A diagnosis of an intersex condition at that time would have had a major effect on my life.

The physical aspects of my puberty have caused me to have unanswered questions for a long time. It was while searching the Internet that I came across an article on PAIS. It seemed to me that there were a lot of similarities to me, and that I might have PAIS or some other intersex condition. I'm really trying to work out these questions and trying to figure out just how important it is for me to have these questions answered. That's why I like the questions you asked of me. It's making me think, and I really need to be able to sort this out. Just writing out my story helped some. Instead of just a bunch of facts floating around in my head, writing them down and looking at them on paper made it less of a jumble.

Now I need to figure out how important it is to me to have these questions answered. Is it important enough to take the next step and talk to a doctor about tests? I may come to the conclusion that the answers aren't worth the struggle and expense. It's just a part of my personality though, to want to find out the why of things, and I tend to be somewhat obsessive about it.

If I were found to not have PAIS and if it was impossible to come to any other diagnosis, and you're right, my surgery may have made some diagnoses impossible, that would be OK. Some questions just can't be answered.

Would having an intersexed condition affect me drastically? I really don't think so at this point in my life. I know it would have had a huge impact if I had been diagnosed when I was young. I understand that even if I was diagnosed with an intersex condition, the fact that it hasn't had a disastrous effect on my life means that I can't compare to those who have had a difficult life because if it.

Knowing the truth would give me a sense of closure, and it would help me to understand myself better. It would answer questions that have been plaguing me for a long time.

I hope I haven't offended anyone here, and if I have I'm very sorry and I apologize. The last thing I want to do is be disrespectful. If you find my posts to your forum inappropriate, and you want to delete them, I will not take offense.

Best wishes,
Laura

[The Female Eunuch]

Hello Laura, and welcome to BLO.

I don't think I can really help you with your questions, but I just want to say that I don't think you post is at all inappropriate or that anyone should be offended by it.

Having changed sex in adulthood takes a prominient place in my descriptions of my experience of being intersexed, and in my case it's not even because it feels like a big part of my life to me - I just find that it's a point I have to raise because the descriptions of other parts of my experience of growing up intersex would be confusing without the background of which sex I was outwardly living as at the times that particular events occurred.

I had lots of anatomical abnormalities at birth, and I have never been able to find a diagnosis to explain them, so don't be surprised if you don't have any luck in finding a diagnosis either.

cheers,
Caroline

[Kailana]

your questions are not innapropriate.i just happen to be a little testy at the moment.

Usually i am one of the more open minded members as I am also reassigning. I just am having a hard time with acknowledging transsexuality as an intersexed condition. Mind you I am not assuming you mean to either.

Most of my time hear i am fairly understanding as I do know what it is like looking male, only difference for me is that alot of my maleness was or is do to repeated surgeries. I am counter those now, sort of rejecting male mostly rather then repeating the "im a woman trapped in the body of a man" speech, its more like I am an intersexed true-hermaphrodite surgically assigned as a male, who rejects that assignment.

I happen to like your post and your self question, even like your response even more.

In a way I am just as curious as I do have two different conditions that affect me, I also have too much 2nd hand and 3rd knowledge that does not match up with each other, which also leads to more questions.

If I offend, know that i don't usually mean too. When I do its pretty direct, lol. Your not a doctor are you? haha, i swear i have way too much hate for a human being.

[Laura Robison]

Hi Caroline and Kaliana,

Thanks for your replies. It's been difficult for me to sort out my feelings and questions, especially since I have two issues that became intermingled. Like Caroline said so well, about bringing up the subject of transsexualism, "I just find that it's a point I have to raise because the descriptions of other parts of my experience of growing up intersex would be confusing without the background of which sex I was outwardly living as at the times that particular events occurred." You really said it better than I could. We seem to have a lot in common, Caroline.

I have looked at trying to find old medical records of mine for some answers. I was born in 1947 and the hospital I was born in doesn't even exist now, and the doctor who delivered me passed away many years ago. I have a delayed birth certificate, and I have no idea what that means. The only notation on it is "I delivered this baby by Cesarean Section". That is the full extent of my knowledge.

I was glad you were direct with me Kaliana, and trying to answer your questions really did help me to sort out some stuff. It was a lot I had never thought about before. I can really relate to you when it comes to confusing and unanswered questions.

And no I am not a doctor. LOL At least no one can hold that against me. :)

Hugs to you both,
Laura

[The Female Eunuch]

Laura wrote:You really said it better than I could. We seem to have a lot in common, Caroline.
I think we have our similarities and our differences.

As a child I knew I had abnormal genitals because doctors felt the need to keep operating on them (I've had 31 operations, and I think about 10 of the operations I had before the age of 16 involved some sort of attempt to make my genitals more like the male norm). So, for me the question was never 'is my body abnormal?', but 'why is my body abnormal?'. And while I didn't have a particularly strong male puberty, I didn't have any signs of female puberty.

In terms of feelings about gender in childhood, I was pretty similar to you.

I came to Bodies Like ours because I had questions about sexuality and how to deal practically with abnormal anatomy (I never really found those answers). I get the impression that your intention is more like someone exploring their family tree - trying to get a sense of who you are in an identity sense.

I'm thinking that maybe the person you have the most in common with here is Dianne.

hugs,
Caroline

[Dianne]

Did I hear my name mentioned? ;-)

I don't know what was done to me. There are five months missing right after my birth, no records at all, and I only remember a couple of hospital stays when I was really young but don't know what they were about - I think according to my adopted mom I had 4 or 5 sets of tonsils because I had them out often LOL! She often complain about how much I cost (health care) and that I was 'defective' (??) and she should have taken me back for a refund. (Yes, she was a sweetie and had a wonderful way with children ***CHOKE!***)

Physically I was pretty much "right down the middle" with regard to phenotype - couldn't pass for either completely (physically) though a micro penis was good enough to put an M on my birth certificate (boy babies were easier to place), though the ragged prenatal scar (if it was prenatal) that ran from the glanis almost to the rectum was ugly and suspicious as were the tiny gonads that hid in the abdoman but could be palpated out with some difficulty. I was happy to get rid of all of that AND the M on my birth certificate.

Yes, we probably do have more in common and some differences to, though I certainly understand what Laura has gone through.

[Laura Robison]

Hi Dianne,

OMG! your post has really hit me hard. I had a scar (at least it looked like it could have been a scar) just as you described. I never had a frame of reference to know what normal male genitals were supposed to look like. I know my husband doesn't have anything that looks like that. I did have a very small penis that would partially retract up inside. I don't know how uncommon that is.

Hugs,
Laura

[Dianne]

Well of the men I have checked out personally (and there have been a few :biggrin: ) the prenatal scar usually starts about the scrotum and runs back toward the anus. It is usually a bit of ragged skin.

That, in itself, doesn't mean much.

[Laura Robison]

Hi Caroline,

As a child I knew I had abnormal genitals because doctors felt the need to keep operating on them (I've had 31 operations, and I think about 10 of the operations I had before the age of 16 involved some sort of attempt to make my genitals more like the male norm).

Oh my, 31 operations! I can't imagine what you have gone through.

I get the impression that your intention is more like someone exploring their family tree - trying to get a sense of who you are in an identity sense.

Yes, it's something like that. I've looked into my genealogy some, but this has been having a much more profound effect on me.

Hugs,
Laura

[Laura Robison]

Hi Dianne,

the prenatal scar usually starts about the scrotum and runs back toward the anus. It is usually a bit of ragged skin.

That, in itself, doesn't mean much.

Oh, I didn't know it was common. I had something that was a different color than the surrounding skin, and kind of ran a zigzag course from the underside of my penis back through part of the scrotum.

hugs,
Laura

[Dianne]

Oh, I didn't know it was common.

You gotta get out more girl! :happy45:

[miriam]

The 'scar' is the Scrotal raphe and it's absolutly normal - no doctor involved :)

http://upload.wikimedia.org/wikipedia/commons/a/a1/Scrotum_raphe.jpg

Groeten, Miriam

[Laura Robison]

The 'scar' is the Scrotal raphe and it's absolutly normal - no doctor involved :)

http://upload.wikimedia.org/wikipedia/commons/a/a1/Scrotum_raphe.jpg

Groeten, Miriam

Mine was paler than the surrounding skin and flat. It looked kind of like a stretch mark. Probably was the raphe though, I guess they look different on different people.

Laura

[Laura Robison]

You gotta get out more girl! :happy45:

LOL You got that right!!! ;-)

[Kailana]

how scrotal raphe became involved in the first place.

Cause like most things, people assume we are all talking about the same thing and we are not. Perinium, area below testes and between anus, lol mine like 1/4 - 5/16th inch wide and damn near black in color. when you get to about half way up the scrotum looks normal like the scrotal raphe shown in miriams link above then looks all dark again, also a good 1/4-5/16th inch wide very dark discloration almost the whole length on my phalic shaft, still in denial about having a penis if your all wondering. to almost the top then a very small scar like mark running at an odd angle towards the tip of forskin.


I have yet to seem to get people to understand what I mean about scarring. If i go downwards and backwards that dark discoloration also Y's out wrapping underneath buttocks on both sides and stops about half way on the back side of my buttock/thigh. Basically looks like a large upside down Y that cradles my entire groin/crotch area front and back.

[The Female Eunuch]

I have wide, flat scars like that all over my belly. I had a scar on the undderside of my penis that was red and silky in texture, but slightly gathered like a badly sewn seam. In places it would have been over a centimetre wide (don't know what that is in american units). This scar was from repeated attempts to construct a urethra going along the length of my penis (this happened between the ages of 4 and 15, so I remember a number of these operations).

If yours goes up the underside of your penis then it may be safe to assume it's the same thing.

cheers,
Caroline

[Laura Robison]

Hi Kaliana,

I had to get a mirror and examine myself to refresh my memory. There are some remnants of what might be scars between my anus and my vagina that were there before my SRS, and that weren't obliterated by my surgery. It looks like a parenthesis ( ) with the top of the parenthesis extended to a point at the top toward my vagina. Kind of like half of an upside down heart. The part where it would come together is gone because of my vagina. The parenthesis part is 2.5" wide. The lines are white and firm to the touch. The rest of what I had is just a vague memory since I had my SRS in 1977.

Laura

[Kailana]

2.5 cm = 1 inch so yes roughly the same width. its kind of hard to get a good measurement as its down low lol. But pretty close to 1 cm in width. I have issues and wonder mostly due to CAH, if the darker nearly black color is due to the form I have, ie the variation of CAH. I know alot of the 17a, -11b all tend to overproduce Corticosteroid levels 10-50 times normal levels and can be similar or show similar signs, stigma more common to people with cushings.

Now I generally ask lots of questions when i am around the medical people, but seldom get answers, I usually get "thats normal" but it is not so easy to get an honest answer. My last appointment was cancelled which annoys the crap out of me, gp was apparenty very sick, which cant be helped, but I have more questions now with rescent visits to two seperate hospitals. I was treated a great deal nicer and again actually had a doctor question me about how many surgeries I have had, while he was draining a boil. Those kind of questions are new to me from doctors, Most have usually done the shake their head and or shrugged physical response when examining me. An open question and I was happy to get asked, but was still surprising to hear from a doctor.

[Laura Robison]

I had a scar on the undderside of my penis that was red and silky in texture, but slightly gathered like a badly sewn seam. In places it would have been over a centimetre wide (don't know what that is in american units). This scar was from repeated attempts to construct a urethra going along the length of my penis (this happened between the ages of 4 and 15, so I remember a number of these operations).

If yours goes up the underside of your penis then it may be safe to assume it's the same thing.

cheers,
Caroline

Caroline, this is getting really scary now!! I had exactly the same thing! It was red and silky just like you described, and it was wide, about the width of my fingernail. I never thought of it being a scar. My husband has the same color skin all the way around.

Laura

[Laura Robison]

I have issues and wonder mostly due to CAH, if the darker nearly black color is due to the form I have, ie the variation of CAH. I know alot of the 17a, -11b all tend to overproduce Corticosteroid levels 10-50 times normal levels and can be similar or show similar signs, stigma more common to people with cushings.

The kind of scar tissue I produce is pale white and flat. I'm lucky in that respect.

I know what you mean about doctors. the good ones are few and far between.

Laura

[Laura Robison]

[QUOTE=Laura Robison;20043]I had to get a mirror and examine myself to refresh my memory. There are some remnants of what might be scars between my anus and my vagina that were there before my SRS, and that weren't obliterated by my surgery. /QUOTE]

Of course, I might have had an accident as a baby which caused the scars too. I'll just never know for sure. :(

Laura

[Laura Robison]

Caroline, this is getting really scary now!! I had exactly the same thing! It was red and silky just like you described, and it was wide, about the width of my fingernail. I never thought of it being a scar. My husband has the same color skin all the way around.

I read this again, and what I meant to say is that my husband has the same NORMAL color skin all the way around.

What I had along the underside of my penis was a reddish color, and had a shinyness to it. Could that be just a normal variation, like that raphe thing? I feel like I'm jumping to conclusions too fast. :???:

Laura

[Sunshine1]

[QUOTE=Kailana;20044]2.5 cm = 1 inch so yes roughly the same width. its kind of hard to get a good measurement as its down low lol. But pretty close to 1 cm in width. I have issues and wonder mostly due to CAH, if the darker nearly black color is due to the form I have, ie the variation of CAH. I know alot of the 17a, -11b all tend to overproduce Corticosteroid levels 10-50 times normal levels and can be similar or show similar signs, stigma more common to people with cushings.

Hi Kailana,

Your post really confused me here. I was born with 11b CAH and never read of anyone with any type of CAH overproducing Corticosteroids.
I know we lack the ability to make the cortisol and that is why we need cortisones. I know that dak pigmentation around certain areas is one of the signs of lack of cortisol. e lack corticosteriods and overproduce testosterone.

We take the cortisone (prednisone, hydrocortisone, dexamethasone) to supress the overproduction of the testosterone and help the the adrenal gland function. I'm here to learn as well and would look forward to literature discussing overproduction of Corticosteroids and CAH.
I know that overproduction of corticosterods is Cushings Disease but also a patient with CAH that is perscribed to much cortisone can have the appearance of Cushings. I was perscribed to much prednisone when I was 17 and the result was a Cushing appearance that went away after the pred was reduced.

Anyway, I'm just confused about your post and would like more info.

[Aseras]

I was always told my scars were from my circumcision. I always though it looked like a hell of a lot, and I wondered how the hell every other parent would ever do that to their child. It wasn't until after I found out much later and talked to my mom about it she told me about the hypospadias surgery and stuff. That makes much more sense. I still consider myself somewhat "lucky" that they didn't look any deeper or do anything else. My scars are also that kind of silky look. The regular skin is very shiny, the scars looks much finer and wrinkled. They are visible and much darker than the other skin. My raphe or line or whatever is more than a skin blemish too. It's more like a raised crease from the midline of the penis back and it also is very dark, but it does seem to change color sometimes, I think in relation to hormone levels.

[Laura Robison]

I finally got up the courage to ask my mother if I had to have any surgeries in my genital area when I was a baby. I told her I had noticed some scars and wondered what they were. What a disappointment. She said that she didn't remember. She said that the hospital did have to keep me a long time, but she doesn't remember why. Then she went on to tell me that she didn't know anything about babies when I was born, and that she didn't even know what a naked baby was supposed to look like. She said that things were different back then and she had a very strict and sheltered life.

She is the only resource I have to look into my past, and I've run into a dead end.

Laura

[The Female Eunuch]

Hi Laura,

you may be able to get a copy of the hospital's medical notes on you from when you were a baby. I know how to do it in New Zealand, but I'll leave it to some of the others to tell you how you would go about it in the US.

cheers,
Caroline

[Kailana]

Your post really confused me here. I was born with 11b CAH and never read of anyone with any type of CAH overproducing Corticosteroids.
I know we lack the ability to make the cortisol and that is why we need cortisones. I know that dak pigmentation around certain areas is one of the signs of lack of cortisol. e lack corticosteriods and overproduce testosterone.

We take the cortisone (prednisone, hydrocortisone, dexamethasone) to supress the overproduction of the testosterone and help the the adrenal gland function. I'm here to learn as well and would look forward to literature discussing overproduction of Corticosteroids and CAH.
I know that overproduction of corticosterods is Cushings Disease but also a patient with CAH that is perscribed to much cortisone can have the appearance of Cushings. I was perscribed to much prednisone when I was 17 and the result was a Cushing appearance that went away after the pred was reduced.

Anyway, I'm just confused about your post and would like more info.

http://www.merck.com/mmpe/print/sec19/ch282/ch282e.html

this is for 11b, making it simple:

11β-Hydroxylase Deficiency

11β-Hydroxylase (CYP11B1) deficiency involves defective conversion of adrenal precursors to cortisol, resulting in virilization, hypernatremia, hypokalemia, and hypertension. Diagnosis is by measurement of cortisol, its precursors, and adrenal androgens and sometimes by measuring 11-deoxycortisol and 11-deoxycorticosterone after ACTH administration. Treatment is with a corticosteroid.

11β-Hydroxylase deficiency causes about 5% of all cases of congenital adrenal hyperplasia. Conversion of 11-deoxycortisol to cortisol and 11-deoxycorticosterone to corticosterone is partially blocked, leading to increased levels of ACTH and overproduction of 11-deoxycortisol, 11-deoxycorticosterone (which has mineralocorticoid activity), and adrenal androgens.

http://en.wikipedia.org/wiki/Congenital_adrenal_hyperplasia_due_to_17_alpha-hydroxylase_deficiency

Congenital adrenal hyperplasia due to 17 alpha-hydroxylase deficiency:
Mineralocorticoid effects
The adrenal cortex is hyperplastic and overstimulated, with no impairment of the mineralocorticoid pathway. Consequently, levels of DOC, corticosterone, and 18-deoxycorticosterone are elevated. Although these precursors of aldosterone are weaker mineralocorticoids, the extreme elevations usually provide enough volume expansion, blood pressure elevation, and potassium depletion to suppress renin and aldosterone production. Some persons with 17α-hydroxylase deficiency develop hypertension in infancy, and nearly 90% do so by late childhood. The low-renin hypertension is often accompanied by hypokalemia due to urinary potassium wasting and metabolic alkalosis. These features of mineralocorticoid excess are the major clinical clue distinguishig the more complete 17α-hydroxylase deficiency from the 17,20-lyase deficiency, which only affects the sex steroids. Treatment with glucocorticoid suppresses ACTH, returns mineralocorticoid production toward normal, and lowers blood pressure.


Glucocorticoid effects
Although production of cortisol is inefficient enough to raise ACTH, the 50-100-fold elevations of corticosterone have enough weak glucocorticoid activity to prevent glucocorticoid deficiency and adrenal crisis.

(I am actually not used to seeing the 50-100 fold level stated, I was sure it was 10-50 but whatever) I am also familiar with some 17a who function most of the time without need of medication.


http://emedicine.medscape.com/article/920532-overview

17-Hydroxylase Deficiency Syndrome more information just cuase.


I Know some where on this computer of mine i have an awesome link of all CAH variations known with great info and treatments for each variation of CAH. Can't find it now, but at some point i will.

which is also why I wonder about CAH and just how many sights/support groups post the same 21 Hydroxylase info over and over again. Which is missleading as there are many forms of CAH.

General Explanation Corticosteroids, or Precurser steroids are the same thing, they are the keys to making what you need, as your 11B, your pathway to making Cortisol is blocked, you overproduce the precursor steroids but you are not able to use those precursors to make your own cortisol. That is why you are given meds to help you out. basically your body doesn't know how to make Cortisol on its own, or just makes a very small amount, but your body does tell itself that it needs to make more cortisol so you end up overproducing the Corticosteroids in vast amounts, which does nothing for you but screw you up. on Meds to counter your ok, or should be much healthier overall if you get a good balance figured out.

Some forms of CAH do allow sufficient production of precursor hormones that some of us can function without medication, but when our bodies are stressed then we do not do so well.

which makes me wonder is it better to not know we have CAH, and not be treated for it thus being vulnerable in certain situations like surgery, serious illness? or knowing we have CAH, be treated and educated so we know what to do if needed?
oh and thanks for asking for information again. I amsure there are older posts in the CAH forum with more information.
these days I find alot of old links dont work anymore or lead to edited information. Still though there is alot of information out there if you spend time trying to find it.

Think at one point I had 8 or 9 different forms of CAH all at one sight, with diagnosis and treatment practices with good details on care and how to cope advice for parents, caregivers and families, Can't find that now.

[Kailana]

She is the only resource I have to look into my past, and I've run into a dead end.

Laura

you mentioned i believe the hospital you were born in doesn't exist anymore. I would try other hospitals.

Like if a newer one was rebuilt to replace an older hospital it is very likely that records exist off in storage and as you are older, they would be on microfilm most likely or even in paper sitting in a storage locker in another medical facility.

Records exist especially those if intersexed people, while hidden from us they have always been of importance to the medical profession.

Often there are medical record holding companies that hospitals use to store old records as well so call and talk to all hospitals in your hometown and see what they use. And most importantly do not listen to them tell you they get rid of old records. You will find that most hospital staff will say junk like that but its not true. They are just lazy, busy and don't want to have to go looking. Fact is they would even have your moms records of when you were born still and even some of that information could be helpfull to you.

[Sunshine1]

Thank you for writing me back.

Thank you for clearing up the first post where you wrote.....11b all tend to overproduce corticosteriods to the second post .....overproduction of 11 deoxycortisol as this made more sense to me.

If my memory serves me correctly, 11 hydroxylase is the last stop on the endocine pathway before the conversion to cortisol. My medical records from the 70's stated it was a partial block.

I've talked with a person with late onset CAH that went without medical except in times of stress like surgery or the holidays.

I've traced fom research 11b all the way back to the Atlas Mountains in Northen Africa 134 bc or something like that.

I don't talk with parents as they want their little girl to be happy about genital surgery and give then a grandkid.


Gender is just an act for me.

Sorry that I interupted the thread but thank you for clearing up my question with a second post.

Sunshine

[Dianne]

Records exist especially those if intersexed people, while hidden from us they have always been of importance to the medical profession.

I wonder how one would go about getting records that were sealed by court order (as mine were).

[Laura Robison]

I wonder how I would prove that I am the same person as the one I am asking about. I have been very thorough about changing my documentation and severing all ties to the past, and destroying old records. Maybe too thorough.

Laura

[Laura Robison]

One thing I will do is ask if the new hospital has the old hospital's records, and where the old hospital's records might be stored if they don't have them.

Laura

[Kailana]

Dianne, if indeed ordered sealed by a judge then you would need another judge to unseal them.

Laura, asking current hospitals there is a good way to find out, most likely they will say they were destroyed, again don't believe that crap. Hell i know my records say they were purged in 1993 from local hospitals, but i also know they exist in other hospitals. And like all things records that are medical important are kept. they are just denied to us.

[Laura Robison]

Well, I have run into another dead end. The person in the records department at the hospital said they only keeps records for ten years. She said that the records for the old hospital no longer exist. I asked her if the records might be kept with the county or state health departments and she said no, that the old records are just destroyed.

The only other piece on information my mother gave me when I asked her if I had any bandages on me, was she remembered I had some kind of bandage, but since I was the first born and they knew nothing about babies, they didn't know how unusual it was, and she doesn't remember much about it. I can't believe they had no curiosity about that. I don't want to get confrontational with her, she's 89 after all, but if it was my baby, I would want to know what was done, and why didn't they consult with me beforehand. Did doctors just take babies and operate on them without consulting with the parents? That's hard to believe, and if true, really disgusting. This is really frustrating.

Laura

[Kailana]

the 7 year and or 10 year time period is a load of crap. That is what they say they are only required to keep records that long.

Again fill out a request for release of medical records from all hospitals in that town, fax them if your not local anymore. And I bet one of them will provide you with some records that suppposedly do not exist anymore. Which will tell you that what the clerk just told you is an outright lie.

I have heard the same from many hospitals have even drove to hometown and filled out a request for release of records. and nothing was available or so they said when they called me a week later. years pass and I asked one of Gp's at the to see if he could get some of those records that were supposedly destroyed, and guess what, they had some. Not ideal as they were incomplete but they do show that records are still there in the city or town I was born in, and also a different hospital rebuilt, same name as the one I was actually born in.

Fact is the only real way to get records is to sue, and be ready to go to court and fight for the release of your records. And guess what when one of us does manage to win, our records and I mean all of them, surgical reports and picts pre and post are still there. Hospitals do not get rid of records. they keep them, so do not fall into the false sense that none now exist. You just have to fight for them.

Which really is annoying as all hell, especially when you can't find people willing to help. Been there, done that, and someday I do hope I will have all the answers I am looking for.

[Laura Robison]

I still feel like I am in shock from finding all of this out, and still trying to process it. This is all I know. My mother had me by cesarean section, and she stayed in the hospital for at least a week, and I know I got out of the hospital after she came home. So what were they doing with me for over a week? And I know I had some sort of bandage on my genital area when I got home. So I know something was done to me. I know I had some kind of genital surgery.

I'd like to get a lawyer to help me get the hospital records if they still exist. I talked to my husband about it, and he is against it. He said it could become public if I sued the hospital, and I would have to prove that I was born a male, and prove that that baby was me, and what if that got out, that could hurt him and me. Also there are so many privacy laws that keep people from seeing other people's medical records. My birth certificate says female and has my maiden name on there. I really burned all the bridges to my past. There just isn't any way to prove that I was that baby.

This is just hell, knowing that something was done to me, and having been lied to all my life, but not being able to find out what was done to me. I'm really not sure what I feel, it's a turmoil right now in my mind. It has really been hitting me hard, and I haven't been taking it very well.

Laura

[Kailana]

you will have to decide in all honesty which matters most to you.

your fairly normal married life now, or your past. Fact is if your mom is still alive why not ask her to fill out a request for her medical records and her kids birth records. and see if that helps.

[Laura Robison]

That's an idea I hadn't thought of, asking my mother to write a letter to get those medical records. Thanks a lot for that! I'll do that, and I hope it works.

I just looked on the Hospital's web site and found out I need to request an "Authorization For Use or Disclosure of Protected Health Information" release form from the hospital, so I'll get that and have my mother fill it out.

Hugs,
Laura

[Kailana]

she will need to sign a release of information for her own medical records covering your birth. a letter wont do crap for you. But shecan request them as well and that will at least tell you what was recorded if anything is relavent from her records when you were born.

[Aseras]

Another option, one that I have found that works better, is to have a doctor, your local physician or whomever you are comfortable with, offically request the records. For some reason that seems to make them "appear" a lot easier and MUCH more quickly than a normal records release request that is just personal or informational in nature.

[Laura Robison]

Another option, one that I have found that works better, is to have a doctor, your local physician or whomever you are comfortable with, offically request the records. For some reason that seems to make them "appear" a lot easier and MUCH more quickly than a normal records release request that is just personal or informational in nature.

That's another idea I hadn't thought of. Thanks, Aseras. That's a good reason for me to get a doctor. I haven't had one for years since my doctor, who knew all about me, moved to another city. She even kept the records that had to do with my past, in a separate file locked in her office to protect my privacy from those who worked at the clinic. I don't know where I will find another doctor so understanding and sensitive about my need for keeping my past private.

Oh well, I need to have a doctor, and will start looking for one after we get back from Colo., in a couple of weeks. I may ask about having an echo scan, or whatever it's called, done and ask about genetic testing too.

Hugs,
Laura

[Kailana]

I have heard the same from many hospitals have even drove to hometown and filled out a request for release of records. and nothing was available or so they said when they called me a week later. years pass and I asked one of Gp's at the time to see if he could get some of those records that were supposedly destroyed, and guess what, they had some. Not ideal as they were incomplete but they do show that records are still there in the city or town I was born in, and also a different hospital rebuilt, same name as the one I was actually born in.

I have experienced the same. several attempts, calling for a an appointment to review my records, faxing requests for records, filing release of personal health records, and none of those helped except in one Clinic that I had gone to, those were little strips of paper glued onto another piece of paper, basically short paragrapsh, 4 pages worth and those are so far to date the most complete records I have been able to get regarding my childhood. Now I have tons of newer records. Very few that are old. I also know I am suppose to have a medical records Album locally that is nearly 10 inches thick. An employee of the hospital in question told me my records are there. But those have never been shown or released to me. I have actually heard this from 3 different people, one of which started asking me if I still had scars you know where, and across my chest which I still do, though extremely faint. long hot showers though work best for displaying old scars.

[Laura Robison]

Wow, the hospitals have some of the craziest policies I have ever heard of. It seems like their favorite passtime is to keep intersex people from seeing their medical records. It's like we have no rights at all! :sad:

Laura

[Kailana]

hope you understand that much now.

An intersexed person has no rights, because that is what the medical community says is in our best interest.

[Peggy]

Laura wrote,

I'd like to get a lawyer to help me get the hospital records if they still exist. I talked to my husband about it, and he is against it. He said it could become public if I sued the hospital...

There are a lot of steps you could take to get your records before you think of suing the hospital. The first step might be a simple letter from a doctor accompanied by a release signed by you. Even if you did sue, the suit would be "public" only in the sense that the record of the court action would be available to anyone who already knew about it, knew where to look for it, and was interested in digging it up.

Aseras, I have myself found that a hospital will get records much more expeditiously if they are requested by a physician than if a patient requests them. This may have to do with fear of lawsuits, or perhaps it is just that getting records for a doctor is part of their normal procedure and something they are responsible for and that they usually make money at, while getting them for a patient is just a drain on their resources.

...My birth certificate says female and has my maiden name on there. I really burned all the bridges to my past. There just isn't any way to prove that I was that baby...

If you legally changed your name at some point, then, even if you literally burned the papers connected with the change, the court where it happened will still have a record of the court order that certifies that your boy name and your girl name refer to the same person. If you did actually change your birth certificate, then you could not have just created a new free-floating identity - there is a legal record linking your old and your new identities. (That is the whole point of legal name changes.)

Even without such a record, you could establish your past identity by affadavit, if they really did want legal proof.


Friendly greetings to all,

Peggy

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •
"When art critics get together they talk about Form and Structure and Meaning.
When artists get together they talk about where you can buy cheap turpentine." - Pablo Picasso

[fraulein_Maria]

I came to Bodies Like ours because I had questions about sexuality and how to deal practically with abnormal anatomy (I never really found those answers).

>>> i'm sorry to hear that. I didn't even realize this was what you were searching for. please PM me. <<<<<

[fraulein_Maria]

Originally Posted by Kailana View Post
I know alot of the 17a, -11b all tend to overproduce Corticosteroid levels

>>> would you please stop repeating the patently false? CAH's of ALL varieties are by definition cortisol DEFICIENT.... as in, NOT ENOUGH. <<<

[fraulein_Maria]

[QUOTE=Sunshine1;20067]Thank you for writing me back.

Thank you for clearing up the first post where you wrote.....11b all tend to overproduce corticosteriods to the second post .....overproduction of 11 deoxycortisol as this made more sense to me.

>>> i have posted a chart of the hormone pathway. If you like, i can send it, and more technical ones to you, and anyone who asks.

Deoxycortisol is NOT cortisol. It has so little bio-activity that you CANNOT live on it, much less produce the symptoms of cushings. Try living without your cortisol replacement sunshine and see how far you get.......

never mind. please don't. the nightmare of untreated CAH is not something i wish on anyone, and can far too easily lead to DEATH.

I had another crisis this summer..... i was taking the 5mgs, and popping a second when the heat got really bad, and it still wasn't enough...

i've got a feeling that when i see my doc again, he'll up me to 20mgs and put me back on fludrocort for temps above 80 degrees. <<<