Author Topic: Intersex most likely without a name for the condition?  (Read 961 times)

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Offline dmj23

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Intersex most likely without a name for the condition?
« on: January 05, 2017, 12:23:27 am »
I got a call from this link that I was given on xxy talk forum in my intro. She kind of helped me out to let me know what they do. The thing is for me I'm dealing with really bad insurance. So its hard to figure anything out. I can't get a geneticist in my area that takes my insurance. My endo is taking forever to review my paperwork and my gynaecologist was gone for the holidays. I already went to a gynaecologist they said I had a level of prolactin but my PCP referred me to one again since my last gynaecologist didnt seem to know much on these issues. He said that xxy meant male so I couldn't have the karyotype even though my DNA test implied I do and mentioned genes having to do with sex reversal. So I'm still waiting right now I have nothing that confirms or denies I'm intersex officially other than the DNA and my pcps review of those results which he's actually the only one I gave the results to. And he said I should keep them for the next doctor appointments. But I still know no geneticist that can take my insurance. But good thing out of everything was I got a call from an intersex support group. She said shed put my in contact with the youth program. What's the hardest thing to do is explain my situation considering there is no name for the problem I have. I sometimes say Swyer's syndrome because people with Swyer's syndrome are identified as female at birth. And thats what happened to me. But I'm also xxy chromosomes. So my symptoms and situation is very different and very hiddeb. It was hard explaining on the phone that I'm intersex but not able to have a name for it. I ended up just saying I had an xxy karyotype and sex reversal genes. My major issues have to do with doctors and my own personal identity and finding out what exactly happened to make me this way... In a sense I get scared a tax because I feel like I didnt know this until I was 22 and I'm 23. So its like not like my family knows or that I had surgeries or anything. But the person on the line was pretty helpful she didnt seem to be too judgy. I'm signed up with another group for intersex women mainly ais.but DSD as well and it was and the administrator was very skeptical kept asking me if I was transgender I had to actually send a result of my DNA results showing I had a gene that had to do with y sex reversal genes I actually have two that I found but might have more idk. I don't have enough medical attention tbh... But anyway its been hard to find a good support group even online. Because I have found ones for specific conditions but I don't quite have a condition or diagnosis. My doctor referenced it as an intersex trait though.its so confusing and on top of it hard to explain considering this is the exception to most rare rules. And what I'm describing comes 1 in 20 million. So it sure feels lonely. Plus most women with my condition have no issues if they do its something random like you need medication to start the period or you started puberty early or  the uterus is small. I don't know its just a tad frustrating for me personally. Glad though that I finally got a call from them. I'm hoping to hear from them this week some time or next. Either or.

Offline emilymae

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Re: Intersex most likely without a name for the condition?
« Reply #1 on: February 27, 2017, 08:25:06 am »
Sounds complicated ... I heard that XXY stands for Klinefelter Syndrome, but it could be a mix of a few conditions.
My intersex condition also hasn't got a name, and I'm 46,XX,t. There could be various combinations of intersex cases.

Offline dmj23

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Re: Intersex most likely without a name for the condition?
« Reply #2 on: August 13, 2017, 05:35:35 pm »
yeah I'm realizing that.

Offline josie76

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Re: Intersex most likely without a name for the condition?
« Reply #3 on: August 14, 2017, 08:29:49 am »
I don't know if this will help you with answers or not.

So if I read it right you had a karyotype test that showed XXY chromosomes? But you have a female phynotype (body appears female) ? Is that correct?

To find if you have AIS you need a test for AR gene mutation. (androgen receptor) I've looked into it and self pay costs at the labs that do it are around $1000 US. However AR gene is not the only possibility.

If you have a normal uterus according to your gyno then likely that Y chromosome had a mutated SRY gene on it. If so it would not produce a protein called TDF (testes determining factor). Without TDF no testes cells will form so normal ovarian cells should instead.

It's also possible for testes cells to form late in combination with ovarian cells. If those testes cells have a mutated gene they might not produce AMH (antimullerian hormone). Without AMH all other internal females organs form on their own. This will also prevent the T producing testes cells from forming.

If you have symtoms of Sawyer's Syndrome it can be that the Y chromosome is missing the SRY gene. Almost everything else on the Y chromosome is redundant genes so it may otherwise effect you like XXX would.

I feel like I may have just muddied the waters here. I have a paper on the process of fetal sexual determination if you want to read it. Kinda tries to go step by step what happens in all of us.
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Offline HughE

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Re: Intersex most likely without a name for the condition?
« Reply #4 on: August 16, 2017, 07:38:40 pm »
Contrary to popular belief, the thing that causes you to develop as male or female isn't actually X and Y chromosomes, it's whether you develop testicles or not. All the X and Y chromosomes do is determine whether you develop ovaries or testicles, everything from that point onward is determined by hormones. Male development is driven by the action of androgenic hormones produced in the testicles (primarily testosterone and a hormone derived from it called DHT), whereas female development is what happens if those hormones aren't there. If for whatever reason the testicles fail to develop, their hormones aren't produced, and you end up with a person who developed as female instead of male despite having XY chromosomes. That's what Swyer's syndrome is.

If you have an XXY karyotype, it usually doesn't prevent you from developing testicles, but that extra X chromosome messes up their development somehow so they don't grow to full size, and don't produce as much testosterone as would happen in a male fetus whose testicles had developed fully. There's normally still enough so that you develop a penis and look male when you're born, however the low testosterone may mean that your brain doesn't fully masculinise, and if that happens you can end up psychologically gender blended or even female identified. Caroline Cossey is a good example of a person who is, in her case, XXXY, and is transgender.

i'm not sure what's happened in your case, maybe you're XXY but it affected your testicles particularly badly so they produced very little testosterone during your prenatal development, so you came out female-looking. Maybe that's where the talk of Swyer's syndrome is coming from.

I know that some of the intersex people can get a bit touchy about intersex vs transgender, but in reality many transgender people have intersex traits, and many intersex people have nonbinary gender identities.

Offline seraph

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Re: Intersex most likely without a name for the condition?
« Reply #5 on: September 13, 2017, 04:38:07 am »
i really appreciate this post. its helped me a lot.

Offline ElizabethK

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Re: Intersex most likely without a name for the condition?
« Reply #6 on: September 13, 2017, 04:41:16 am »
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