Hi everyone,

I'm new to this site and have many questions about my condition. I do not know what syndrome I have and don't have access to knowledgable doctors. I have literally spent thousands of dollars trying to get help.

I'm 39 years old and just found out 2 years ago that I have an intersex condition. I had some sort of genital surgury at approx 1 year of age. It doesn't appear that I had the kind of horrible surgury many other people had. They tried to correct some defect in the "boy" parts and botched up the operation pretty bad. I have had severe pain all my life. My family disowned me so I can't find out what was wrong.

I had growth problems when I was young. My doctors thought that I might become a giant. My parents refused to let them give me growth hormones. I only grew to be 6 feet tall, but my hands, head, and feet are very large and I'm kind of out of proportion.

When I was 11 and puberty hit, I developed psychiatric symptoms and seizures. As I got older, I developed symtoms of advanced multiple sclerosis. I had to walk with a cain on good days. Psychiatrists said I had a neurological problem and Neurologists said that I had a psychiatric problem. I was totally treatment resistant; in fact, most meds made me worse. Endocrinologists couldn't figure me out either.

The main clue I had was that my body actually produced estrogen and seemed to have a monthly cycle. When my estrogen levels were high, my sickness symptoms were fewer. When my testosterone levels were high, I would become totally disabled. Apparently my body can read the coding of testosterone just fine, I looked like a guy (and lived as one), but testosterone was toxic to me.

Two years ago I was put on hormone replacement therapy to keep my estrogen elevated and my testosterone levels at bay. Ever since that day I havn't been sick anymore. I have even held a job for the past two years and haven't missed a day of work (a first for me). Ironically, I do psychiatric social work. For the last year I have started living as a woman because of the body changes.

There is much more to my story, but these are some highlights. The doctor who told me I was intersexed doesn't really know a lot about the syndomes and couldn't refer me to anyone in my area (Detroit, Michigan). No, I haven't had a chromizone test yet.

Has anyone seen someone like me before or have any guesses as to what syndome I might have?

Kara

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Kara

Hello Kara,

to BLO and thank you for your post. I, myself, would highly recommend a qualified doctor, particularly an endocrinologist, as you mentioned both growth and sex hormones. I am willing to provide a weblink to one of the possible reasons for your enlarged extremities, which may be due to over-production of pituitary hormones, which affect both growth and sex hormone levels:

http://www.umm.edu/endocrin/acromegaly.htm

Please be reminded that I am only giving you an educated guess. There may be more than just acromegaly going on since you mentioned neorological symptoms. When you do see a doctor, an accurate diagnosis may be made by taking blood tests for HGH (human growth hormone) and sex hormones (estradiol, total and free testosterone) pituitary hormones (FSH, LH) and gonadotropoin-releasing hormone GNRH. A complete neurological evaluation would be helpful also, as well as Karyotyping and pelvic/abdominal ultrasound to ascertain internal structures and sex-chromosome variation.
For this you need a physician's services. Once again, please seek medical care.....I'm sorry the recent rants about medical people may have caused some distress, but there are good ones out there.


I think there will be others here at BLO who may be of much more help than I, as well as directing you to the appropriate local physician that may be more open and positive with you. I just wanted to give you some idea to work on since your mind may be very anxious to know anything other than zero . I wish you good luck and take care.

Dana

Thanks Dana,

I have done all of what you mentioned. Unfortunately, every Endrocronologist in my area doesn't seen to have an understanding of intersex. I wasted so much time and money on them. I finally got smart and interviewed them by phone before I started scheduling appointments. That's how I found out they don't deal with intersex. I found a doctor at the University of Michigan who works in their pediatric intersex department, but he wouldn't make an exception and see an adult. He also didn't know anyone to refer me to.

My biggest problem (besides not being able to afford anymore medical testing) is that I went from being a partially to totally disabled person for 37 years of my life to being totally well for the past two years since finding out about my intersex condition and how to "fix" the effects of my sex hormones that made me so ill. Because I am well, every new doctor just blows me off because in their words, "you were sick, now you are well; you should be happy and just go with it." One very prominate doctor in this country told me that because I am such a hard case study, most doctors wouldn't want to spend the time or energy on me, especially since I'm not ill anymore. It actually was nice to hear honesty for once out of a doctor even though it wasn't the answer I wanted to hear. A former doctor of mine seemed to have a pretty good understanding of intersex, but since she didn't specialize in it, she couldn't give mine a specific name because I don't seem to fit squarely into any particular catagory.

Maybe I should just "be happy and go with it" since I am well and have a general label of intersex. I guess I'm just looking for answers to something that makes no sense to me, and couldn't be changed anyway.

Sorry about my depressing rambling.

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Kara

Hi Kara,



Part of the reason you may be having problems finding a doctor for 'intersex' is that intersex is not a medical pathology. Intersex is not a disease, nor does intersex have its own set of symptoms but rather it's an umbrella term for several dozen different medical conditions. So it goes without saying you will not find a a doctor who specialises in "intersex". You will have better luck looking for a physician who specialises in your symptoms that you believe are the result of whatever intersex condition you may have.

Betsy

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Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

Hi Kara,

As Betsy mentioned, there are many different conditions that fall under the general term of "intersex". I don't know if you have done this already, but you can always do what many other intersex people have done in the past, and do a web search on the word "intersex". Once you find a general list of intersex conditions, you can further refine your search for information by doing searches on the individual names of the conditions you are interested in. Then you will probably find links to eMedicine and the like where you can find information articles on various intersex conditions.

Hopefully, this search can help you. I am not so sure that you are looking for immediate medical attention, since you mention that you now feel great. It seems to me that you are trying to better understand your past. Throughout the world today, with a glaring exception in the area of intersex treatment, there is a tendency towards health education for patients. This exception is based upon notions that an intersex person's knowing about their situation will lead to social confusion, and therefor intersex conditions are often seen as a "social emergency" requiring that information be hidden in secrecy and shame.

In searching for information about your past, you can always try contacting the hospital where you were born for your medical records. In many cases the records have been lost, but maybe your records are still available. It is worth a try. Earlier this year, I posted a guide to getting hospital records on this forum. You might want to look at it. Good luck.

Peter

Peter,

My birth records do not exist anymore. Whether they were some of the documents that were distroyed or misplaced at the hospital I was born at is still a mystery. All I know is that no one at that hospital seems to be able to locate them. Since the only surgury I am aware that I had occured when I was about one year old, I figure I would have a better chance of finding these records if I knew where the surgury was done. My dad was in the service then so it might not have been done in Michigan, it could have been done in Nevada. My records from my pediatrician could be of some benifit if I only knew who he was. My parents won't give me the names of the hospitals or doctors.

And yes, I am trying to make sense of my body, my past, my present, and my future. Who am I and which direction do I go from here. This is the first time I have ever talked about my confusion, anger, and feeling like I'm in a tailspin with anyone who has experienced what I am going through. Therapists don't seem to be of much help because I haven't found any that even knew about intersex. I waste more time trying to get them up to speed about IS. I know what I need to do because I counsel people for a living. I'm not angry about what was done to me, I know my parents thought they were doing what was best for me. I struggling with being let down by the people I love who should have been there for me. It's kind of hard not feeling like there's something wrong with me as a person even though I realize that's not the case, it's just other's fear of the unknown.

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Kara

Hi Kara ,

For many years (that's 25y ago) I had a good family-doctor. She did all the necessary testing, referred me to other doctors or clinics and even wrote a letter to the army attesting that I was unfit for service. She always tried to keep things as simple as possible for me and so I seldom regarded myself as someone with special medical needs.

What I'm trying to say is, maybe it would be easier to find a good GP whom you can trust and talk to. He or she doesn't need to be an expert. Any GP should be able to tell, if there's something's wrong with you, and they can just refer you to an endo when necessary. (Well, I also had a few docs who were ignorant or even rude, but many really tried to help.)

Maybe you know someone else in your family (bros, sisters, uncle, cousins...) who has symptoms similar to yours? Sometimes these things run in families but won't show up in every generation.

Before you spend money on a chromosome test, you should know that a simple blood test is pretty useless if you have a chromosomal mosaic. Meaning, you could have several cell-lines, but a blood test would only show XY (or XX).
Also pelvic/abdominal ultrasound is, according to my GP, not reliable in all cases.


I also grew very fast and am several inches taller than my sisters. I stopped growing when I was 13yo, only my arms grew longer. My hands and feet are very small though. I had excess cartilage inside my nose (obstructing airflow), excess tissue growth in my face, a narrow palate with a small cleft and a few other things. During my 20s I produced some testosterone and often had joint and musclepain, which my doctor couldn't find any cause for.

hope you find some help

Sofie

The quote is true, a blood karyotype only tests a very few blood cells....I saw mine and the plate showed less than a dozen, the foonote at the bottom of the test sheet specifically mentioned: Mosaicism, due to limited cell count, may not be detected. (Thank God, my insurance covered this one...appx. $1500 plus This procedure is regarded as only a "screening test".

As for ultrasound, finer structural variations will not be detected either, and the "results" are of course dependant upon the operator and scanning parameters, and the radiologist who "interprets" the scanned areas.

Thanks for clarifying that, Sophie.

Sophie,

I found a wonderful GP who has been treating me when I need it. He's non-judgemental and has really done wonders for me (mainly by caring and being there for me). His advice to me was "This is the first time in your life you have been happy and healthy, just go with it". At first I thought his advice was a little cold, especially with all the questions I have about myself, but now I'm beginning to see some real wisdom in his suggestion.

There are no other family members with symptoms like mine. My brother who is 4 years younger than me was born with multiple birth defects. He was born blind in one eye and had skin on his face and the top of his head that looked and felt like sandpaper, but nothing affecting his reproductive system. He really went through a lot of garbage from other people growing up. He had a lot of plastic surgury.

I did find out that my mother was being nuked in the 60's. I guess if you had severe acne doctors were giving radiation treatments to "cure" it. Apparently it worked pretty well, but they quite doing it for obvious reason that we now know about. My mother said that they didn't use lead shielding back then like they do if you go in to get an x-ray. The result was my mother's thyroid got severely damaged, who knows what it did to her ovaries. I don't know if she still was getting the radiation treatments while she was pregnant with me or if she ended them when she found out she was pregnant. She wouldn't go into detail with me. I was suprised she said as much as she did.

What's the name of the best blood test to have done for checking chromosones? I'll see if my insurance covers it.

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Kara