New member RSR23

[RSR23]

Hello!

I am a new member, and I am very happy to have found this group. I am 50 years old. I was raised as a female; I even gave birth to one child, but went through menopause at 35. Since my earliest memories, I have always felt male, in spirit, if not in body.

As a young and middle-aged "woman", doctors doing internal exams would ask me when I had reconstructive surgery - when I would reply that I did not ever remember having such surgery, the doctors would abruptly stop questioning me.

I did not receive any confirmation about my intersex condition at birth until recently, when my 85 year old mother started dropping very broad hints about "the problem down there" when I was born. As a child, I found pictures that I now realize were of the genitals of an intersexed infant. Could it have been pictures of my own body, prior to surgery?

My aunt was diagnosed with adrenal gland problems, and my mother has elevated testosterone levels. I have strong reason to believe that I have CAH. I was diagnosed with polycystic ovaries, which I have read is associated with CAH. I also have a very poor immune system, and have suffered from severe leg cramps since infancy. Although my figure seems strongly female, I have a high testosterone level, and have to shave daily.

I have felt very alone all my life, because of this condition. I have also had very low self esteem since early childhood. I have always been in the habit of apologizing for everything I do - my mother has always made me feel that I had done something wrong. Now, at 50, I understand that her repulsion at having a child with a physical abnormality was the cause of her behavior - that she had the problem, not me.

My friends have tried to understand about my issues, and have been (mostly) supportive, but I would really like to correspond with others who have similar issues as I.

Input from others in this group would be much appreciated. I would especially welcome input about how one should proceed as far as trying to retrieve birth records.

Thank you for taking the time to read this very long message.

[fraulein_Maria]

Is the form of CAH you most likely have.... the other forms are often fatal untreated. BY untreated, i mean treated without steroid replacement. I'm assuming that you have not been on dexamethasone, prednisone, hydrocortisone, or any other cortisol analogue.
its supposedly rare, but i keep running into other 3 beta's..... and recognize them before they are dx'ed.... as sisters under the skin.

Welcome. :)

[neko2]

Could be 3beta-HSD, but it is possible to have mild 21-hydroxylase deficiency and survive without treatment.

[Clouds]

The leg cramps made me think of a partial 11-hydroxylase deficiency, so now there's three different opinions. But anyhow, welcome to the forum!

[Kailana]

Hiya RSR23, welcome to the forum. Thank you for posting. I'd like to say its not so easy to get medical records. You need a lawyer in most States. If, your interested, first go to the hospital you have been treated at. Do not tell em why you requests to review or get copy's of youor records. That will pretty much guarantee that they will be edited before you see them. It is possible that they may accidently leave a few things in them. So first request to see your records. If they dont have any, It will probably take a lawyer to get them. Many of us have had the line "Its been over 7 years, we aren't required by law to keep things over 7 years", I found that they do keep them, usually locked up, in storage. Or that there was a fire, that one is real common too. Or have your current doctor, request your medical records to continue treatment, i got a few that way when the others didnt give me any. Still edited, but at least i found out that they did have some of them. if you have the money for a lawyer, sue. So far thats pretty much about the only way to get your records released to you. HIPPA law allows any information that may cause trauma to the patient to be withheld. Most of us have had to deal with this issue over and over again.

Best wishes.

[prince....ss?]

Gee I did not have any trouble at all. I was born in 1962 at Yale New Haven I gave them a call about 2 years ago. They gave me a phone number to Chart One Inc. Apparently they are some medical record storage warehouse. I don’t know if this is allowed or not but this is Chart One Inc phone number 1-800-299-8694. They sent me a form to sign and they copied everything. I don’t think they missed a page. So I would start by contacting hospitals that you were treated at and ask for the records department. That would be my first step. Then give this chart one a call. Good luck

Prince….ss?

[Sunshine1]

A couple of years ago (2001) I got my records from 1970 to 1988. Called the hospital and they sent me a form to fill out and send on to the company that stores the records.

It cost me 60 bucks and six months later I had the records that had everything......"the clitorectomy was well tolerated" ???%^*$ lol .....yeah . Couple Weeks later ...."blockage from the surgery" ohhhhh so that's why I had that cathader coming out of my pelvic area for a couple opf months ......thanks?????? Heck, I even talked with the ped endo a couple of months back and he also offered to give me the records.


I wouldn't recomend looking at the records without a therapist, the doctor that you had at the time, your doc now, or a stiff glass of whiskey and give the doc a glass too.


From the records it does show the best they could in that era for someone with a condition like mine. The urology dept. even stated that I "could wait a couple of years" and I did until age five.

If you think that you might have CAH then this is a good page to also look at www.caresfoundation.org.

Your primary care doc can suggest/ refer you to an endo that can do blood work to find if you do have CAH....Maybe Late Onset CAH?

[fraulein_Maria]

[QUOTE=neko2;12083]Could be 3beta-HSD, but it is possible to have mild 21-hydroxylase deficiency and survive without treatment

>>> that would be late-onset. it appears this person had problems at birth. In my research on my condition, i've discovered that its common practice to perform a clitorectomy and send the child home with no treatemnt what-so-ever. males with 3 beta seldom live.
I don't know why this is so. the genes for every form of CAH are carried on the somatic chromosomes... not the sex ones, so its not like the boys are missing a copy of an X-linked gene.

[fraulein_Maria]

[QUOTE=prince....ss?;12101]Gee I did not have any trouble at all.

>>> lucky you. i got a form letter telling me that "we are not required by law to keep those records for more than 7 years..."

which is true, but entirely beside the point. though they are not REQUIRED to keep them, they do so anyway because they are legal documents and protection against future lawsuits.

I fluctuate between wanting to see it in black and white... and being satisfied that i know the truth, the doctors be damned.

since i have sought my records for other childhood treatment and gotton it without any difficulty, despite the fact the records were over 20 years old (it was about ten years ago when i got those..... my child's adoptive parents wanted as much info as i could give them) i can only conclude that they have something to hide.

So, when i get the chance to see a dr. friend of mine in TX, i will see if i can't call in a favor owed, and get him to ask for my records.

I don't think i'll need a therapist about it. every time i've gotton confirmation of what i've known (medically) to be true before, i've had nothing but a blessed sense of peace.

[prince....ss?]

Well I had my suspicions for a long time before I requested my medical records but to tell you the truth it still hit me real hard when I opened my medical records and started reading. The Black and White of it flipped my world real hard. I didn’t know where to go and I had no one to talk to about it except my mother and she was the one that lied to me all those years. I still think the biggest thing that still kinda’ bothers me is the fact that they could not give me a name for 11 days. Gee is “IT” a girl or a boy???

I can honestly say if it weren’t for BLO and the good folks here I may not have made it this far. In the two years since my discovery life has gotten better then ever. I now can rationalize my feelings by understanding what I am and what was done to me. So I think having the Black and White of it is a good start on the road to recovery and discovery

[Glenn]

"Now, at 50, I understand that her repulsion at having a child with a physical abnormality was the cause of her behavior - that she had the problem, not me."
Ditto - my mom regarded my condition as no less than punishment from God. Aren't I special? Maybe I should check for that 666 tattoo as well... :devil_smi

[prince....ss?]

Just an update about my search of my medical past.

This new thread got me looking back into my medical record and on the surgical notes it listed the doctors name that performed my surgery so on a whim I Googled him and found that he is still in practice and it listed his phone number.

I was not really sure of what to say or ask but I called him anyway. When he got on the phone I gave him my married name and explained that he did surgery on me over 44 years ago at Yale New Haven. This doctor after 44 years said that that must be my married name and gave me my maiden name as if it were yesterday. He remembered every aspect of the decision making and the many meetings that were held before my surgery. He gave me information that I could not have gotten elsewhere. The cool thing is he has pictures of me before my surgery and will be sending me a set. ( Now at family reunions I can say look what I added to the family photo album, baby pictures!!!)

I think the conversation was informative for him also I let him know the nurture vs nature was not a complete success with me and he was surprised by that. He was also surprised that I would have liked to have been informed that I was hermaphroditic and he did not understand why that was so important in my personal development.

But the man was truly interested in the results of his surgery the many years after wanting to know if it looked good and functioned properly. He was truly interested if the results of his work gave me a better life. He said he often wondered how my life went.

So I really have not had enough time to digest the conversation and the words keep replaying in my mind. So my feelings are really mixed.

The one thing I just noticed is how whenever I discuss this hermaphrodite issue with family or doctors or close friends the one thing in common of their responses is this strange reassurance of my gender/sex. Things like “your still a beautiful woman”, “ Your still my little sister”, or “ I have a daughter that does construction and she is a normal woman”. All I can do is shake my head and think that is not the point.

[Dianne]

All I can do is shake my head and think that is not the point.

People who have not faced the agony/confusion will NEVER get it - I thinks it's impossible unless you have been there!

[Kailana]

The one thing I just noticed is how whenever I discuss this hermaphrodite issue with family or doctors or close friends the one thing in common of their responses is this strange reassurance of my gender/sex.

I get pretty much the same response, although usually its more of "your really a very nice guy," or "you are our friend, we accept you, we want you to be happy, we care" ya know, things along those lines. Friends seem to be alot more understanding then some of my immediate family, extended family is better, i havent been able to figure that part out.

I am glad you were able to get your records. Alot of us haven't been so lucky. I hope, what i have just read, seems to have cleared up some questions. That is really what i think we, need, to find our way. One more piece of information to help us provide our own understanding of who and what we are.

Thank you for that update Prin....cess, it is greatly appreciated.
Best wishes

[RSR23]

Thank you all for the kind words of support, as well as your suggestions. I have felt so very alone. My friends try to understand my anger and confusion, but I have not felt like I belonged anywhere until I read all of your responses.