My story " An Intersex Nightmare"

[dolphinwolf (imported)]

I normally wouldnt post my story for fear of ridicule, but I face massive ridicule daily so this should be a breeze.My story is unusual in that I have a condition that Medicine terms " True Hermaphroditism". Most people will say"So you have both sets of sex organs". No, thats biologically impossible. I have both sets of reproductive organs. In other words Male external organs and internal female organs. There is no external female genitalia. The only thing thats there is a urogenital sinus that allows blood to seep out. You may ask " How is that possible?' thats a good question. My condition is two fold. The first ( which is actually secondary) is called Klienfelters syndrome. Thats not really such a big thing. what it amounts to is,Having any number of extra X chromosones. Boys chromsome karyotype is usually XY and girls are usually XX. But sometimes there are malfunctions. My chromosome karyotype is 48 XXXY/XO. 48 is the total number of chromosomes, XXXY is the karyotype. as you can see its made up of both karyotypes with an added problem. The XO.

The X is female chromosome and the O is a autosome that cant be identified. This by the way is called a mosaic. That means some cells carry the XXXY pattern and others carry the XO pattern. The XO pattern doesn't have a name. Its usually restricted to Turners Syndrome, except when there's no clear cut reason to have Female organs where they shouldn't be. The XO in this case represents those organs.

Klienfelters syndrome is what affects my male reproductive organs. It causes, sterility, low to nonexistent testosterone levels, testical atrophy, osteoporosis, depression ( thats probably due to the testosterone),euchunoid features, gynecomastia. I'm no exeption. The funny thing is that all this escaped unnoticed until puberty. I hate to say this but Doctors are sometimes ignorant. The urogentital sinus was at that time ( birth) the size of a pencil lead. Now its a little bigger than a pencil. In a way I can see how they missed it.

But then came puberty. Or should I say it didn't come when it was suppose to.The only thing that really happened was I got tall. Fast. My breasts began to grow. And then I started bleeding. The urogenital sinus had grown together with the urethra, prenatally. And I was bleeding from my penis. sometimes in droplets but mostly showed when I urinated. This caused massive infections. This also flipped everybody out. especially me. At first and after many tests it was thought that my kidneys were bleeding. That I had a disease called Burgers disease and I was going to die. Oh MY GOD. Thank Goddess I was sent to a urologist for conformation. He noticed how small my testicals were and did tests like a buccal smear for chromosome analysis, an ultrasound, A uroscopy ( scope up your urethra), and a laperoscopy ( scope in your belly), x-rays and numerous lab tests ( hormone levels and stuff). Thank goodness for that man!!!! He found all the problems. The next thing was what to do. Well my mom decided against removal of any organs do to the fact that she wanted me to be able to make my own decisions. So he seperated the urethra from the sinus. The infections ceased.

So now, i live my life as someone caught in the middle. I'm neither male nor female. My body does make some testosterone but not much. Somebody here stated that the norm for a male is between 200-1000. Im sittin at 52. My estrogen levels are suffering as well. so im on a little estrogen hrt. But if the levels get to high then my period doesnt act right. Back to the balls, I want them gone totally. Then my already low testosterone will be zip. and these little marbles will be physically history. I shouldnt have to keep something that doesnt work, right?

The docs around here wont even listen to my pleas. Insurance wont cover it cause now its considered cosmetic. ( Thats ok mom I still get to make the decision). I guess I'll have to make a trip to this Kimmel fella, huh. Other than the balls, I'm pretty happy being me.

Now for my penis, the only way i'd have it taken is if they could use it to hook up the plumbing like it was meant to be. But then again it may be to small for even that. Oh well, thats about it. I hope it explains more and doesnt bring forth more questions. But Im always willing to answer or teach others.

[plix (imported)]

You have certainly been through a lot and still have a lot to deal with. Being trans is hard, but I'd imagine that being Intersex is harder. Doctors do seem to want to ignore the issues of the eunuch-trans-intersex community, and insurance can be even worse. I've had my share of bad luck with doctors too. I send you my best wishes and really hope that everything works out for you. I am here if you want to talk

If you are interested in Kimmel, I would definitely recommend him. His age is starting to show, but his work is still great.

[John W. (imported)]

"Dolphinwolf", I am curious (as a prepubertal eunuchoid myself) about your phenotypical secondary sexual characteristics, in view of your genitalia and mixed XXXY/XO chromosomal karyotype. What about your voice? Do you have any facial hair?

[Blaise (imported)]

I recall reading Klienfelters syndrome but that was a long time ago. I recall more about Turners syndrome. Ecumenical Ministries of Oregon in 1976 sponsored a seminar that dealt with gender ambiguities. I recall excellent lectures by psychiatrist. Your description is clear, sufficiently detailed, and helpful.

I am sorry about the poor response of some physicians. As one who suffered from depression for over 45 years without much help from doctors and insurance companies, I feel at least one aspect of your suffering. In the same moment, I am delighted you found a physician who knew his business. Your mother impresses me.

Thank you for posting. I hope that at least some of what we do here helps you. You have helped me with your contribution.

[dolphinwolf (imported)]

"Dolphinwolf", I am curious (as a prepubertal eunuchoid myself) about your phenotypical secondary sexual characteristics, in view of your genitalia and mixed XXXY/XO chromosomal karyotype. What about your voice? Do you have any facial hair?

John,

I have very little facial or body hair, and voice is of the tenor range. I'm often mistaken as female and that can be embarressing if your not trying to be. I dont think I act feminine in any way, maybe they think I'm a butch dyke. lmao Such is life

[R Wassersug (imported)]

Dolphinwolf,

I am not normal on the board here, but was pointed toward this thread.

Dolph, your story is fascinating. Where are you located? I would be curious to know if any of my clinical colleagues in North America, who assess sexual orientation/attraction in trans and intersex patients have assessed you. What do you consider your sexual orientation? Pease feel free top contact me privately, if you don't feel like posting that openly.

Richard Wassersug

[dolphinwolf (imported)]

Dolphinwolf,

I am not normal on the board here, but was pointed toward this thread.

Dolph, your story is fascinating. Where are you located? I would be curious to know if any of my clinical colleagues in North America, who assess sexual orientation/attraction in trans and intersex patients have assessed you. What do you consider your sexual orientation? Pease feel free top contact me privately, if you don't feel like posting that openly.

Richard Wassersug

I'm located in NC, I identify as bi but lare more drawn toward guys. In fact I have a bf at this time.If you have anymore questions, feel free to pm me.

[dolphinwolf (imported)]

I'm located in NC, I identify as bi but lare more drawn toward guys. In fact I have a bf at this time.If you have anymore questions, feel free to pm me.

I wasn't fair in answering the orientation question. It would be more acurate to say that Im gay because I have male external genitalia,but as my bf would say, I have some feminine manerisms, and a brain that is definately female.Its hard for me to see it at times, but he says that Im alot more female than I care to admit. Be it hormones or wiring, probably wiring, seeing that my estrogen levels are normal now with HRT, but were low before HRT.

Hope that explains it more sufficiantly.