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Intersex... and then some.

Started by felixtemin, December 06, 2016, 06:23:36 AM

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felixtemin

Hello All...
My wife and I have been trying to have babies, one of the tests during fertility treatment is karyotyping, during this I was diagnosed as having a mosaic Klinefelter's syndrome.
My childhood and development make a Whole lot more sense now, even at 40 years old!
I am tall, 6'3" regular size penis, smaller than average testicles.
Never really did fit in at school, (boys only), being  tall you are expected to play all the sports, played some rugby, didn't really have the upper body strength etc... did have the speed (100m). Bisexual.
I had a girlfriend late at 19, and lost my virginity. Second girlfriend later got married to another girl, so there might be some lesbian hormonal attraction there. ;-).

Repeat tests showed the same (Karyotyping) using a maximum of 30 cells. 46XY/47XXY
But further tests I had performed privately using ~800 cells revealed a complex mosaic.
So I am actually 46 XY / 47 XXY / 46 XX / 48 XXXY. (~73%/20%/6%/>1%)
I also got myself sequenced, which was also an eye opener. The usual phenotype for klinefeletr's is some mental retardation(full XXY), but I am smart, a professor, and have an IQ of anywhere between 142 and 161, depending on how it is measured. I am lucky, so very lucky, and have some extra copies in the right regions.
So yes,  that's pretty messed up.....cool, but lonely, as I am the only one ever described, which doesn't help my endocrinologist.

While being tested, it was also reveled that my hormones were way off.... Like really a lot.
Super high estrogen, that kept on increasing...
I had actually started growing breasts, in like 3 to 4 weeks I had a B cup.
More, and more tests, the urologist I had just kept going.
No treatment though, and I was having panic attacks and depression, massive insomnia, foggy mind, dizzy spells.
Further tests showed an increasing HCG level. (bad) + more T.
Ultrasound showed bilateral lesions in my testicles, and an MRI showed gadolinium positive focus in the right testicle. More MRI, CT.....
I changed urologist, and he immediately ordered a bilateral radical orchiectomy.
It was mostly my choice, the right would have to come out anyway, and I didn't want to mess around for years while the left one shrank, and became cancerous, while I fort various TRT meds.
They were removed.
I can't describe the feeling of comfort, safety, well being, just days after surgery. I slept, the panic attack and depression disappeared. I felt like I was becoming what my genes wanted me to be.
The balls are gone, and I am now starting testosterone therapy, lowest patch available, we will see. My endocrinologist will most likely let me take estrogen as well.
I learnt during the year of up and down T and E, that I actually like an E dominance. My brain is immensely clear, I am calm, libido is lower, but not gone, and I could still get erections (just).
I am not talking SRS here, just a bit more feminine, softer skin, calmer, no one will notice....
My wife agrees, she says that I have actually been cycling for years, mood swings, bloating etc..
I love her so much, and she supports me so. We have banked sperm, and are still moving forward with ICSI IVF treatment, so a baby soon with any luck. Can't wait.

I have rapidly become aware of what intersex is, and what it means to be intersex. My HR at work knows, but that is all. So I havn't come out yet, just not brave enough at the moment.
One thing I do know is that the medical profession doesn't know ->-bleeped-<- at times, but at other times Dr's can be very caring.
Although I had the orchiectomy, no cancer was found, and my Dr, had put down Klinefelter's as the reason for surgery. This is clever, as it does not give me a pre-existing condition, and you can not be refused insurance or treatment for genetic reasons. But you can for cancer.
Take note my intersex friends !! ;-).

Cheers.





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Jacqueline

Welcome to the site.

Thanks for sharing your experiences. What a scary path to travel. I hope it smooths out for you soon.

I also want to share some links with you. They are mostly welcome information and the rules that govern the site. If you have not had a chance to look through them, please take a moment to:


Things that you should read



Once again, welcome to Susan's. Look around, ask questions and join in.

With warmth,

Joanna
1st Therapy: February 2015
First Endo visit & HRT StartJanuary 29, 2016
Jacqueline from Joanna July 18, 2017
Full Time June 1, 2018





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felixtemin

#2
Has anyone any experience of hormone treatment for intersex conditions.

I want to maintain my intersex, and after having a bilateral orchiectomy, I don't want to just take testosterone and return to a purely male phenotype/gender.
I liked the boobs, the soft skin, less shaving, (I would make a terrible transexual however)

I want to be in between, and there was a magic point in the middle of last year of high E low T, where I was super lussive, productive, had a some ED, was very calm, it was awesome.
I have no energy without the testosterone replacement at the moment, I fall asleep at 2pm if I don't use the patches <dosages not allowed>
If i switched estrogen, would that get my energy back also?
Is anyone taking a combination of hormones? T+E?, E alone?

Moderator edit: Dosages not allowed due to policies.

Thanks


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Cindy

Hi,

I'll be removing your duplicate post but I hope I can give you an answer.

You need a consult at an endocrinology clinic use to intersex conditions and people. What you are asking is quite common in the intersex community nowadays, at least in Australia.

It is perfectly feasible and I know carried out here.

Cindy
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felixtemin

Thanks for the advise.
I am working with an endocrinolgist (in USA).
But wanted to go in armed.
I don't know about other countries but in the US, if you know whats what, then you can usually get what you want...;-)

What I was after was a rough idea of what to ask for.
T E and or P?
If you have any links that would be cool.

Thanks
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Cindy

OK the people I work with are interested in you. The client. What is important is how you wish to present and the 'chemistry' is designed to help that as much as possible.

So you need to be very specific in what you want, the better you can describe how you want to feel and present the better the team can help.

What do I mean by that?
(The case study is not you, just an example)

If I have non-binary assigned FAB they may wish muscle, less fat, no clitoral enlargement but hair growth - or any combination of that (and anything else) it can and is being done but the best results are those who can explain exactly what they wish (I know that is hard, particularly as we may change as we develop). It is very important to work with your medical team, as long as they are looking after you and you are aware of non-surgical limitations.

I apologise for grouping you with TG people, many intersex people find that insulting for understandable reasons, but I was giving the process as an example.

Cindy
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felixtemin

#6
Many Thanks Cindy,

In terms of how I wish to present, there are two areas, mental, and outward appearance.
Short version.
Mental: not fatigued, clear, calm, low labido.
Outward appearance, male/androgynous, mildly eunuchoid, breasts (take or leave them I don't mind), soft skin, less hair (not very hairy anyway). Not worried about muscle mass.
The Penis is staying, I don't mind some ED. I will ask for my scrotum to be removed at some point.
(There were some issues with the gubernaculum on the left side, and there was diffuiculty in removing the testicle, now there is a painful lump there. Plus I just don't like it)

Long version.
In the last year my hormones have been all over the place, presenting with hypoestrogenism, Testicular failure with hypogonadism and testicular failure.
During this time there was a period where I had great mental clarity, i.e. no fog, I had no fatigue, no depression.
It lasted about 3 months, no hormone measurements were performed until the end of this period, after which the estrogen appeared to be way too high, and I was foggy, dizzy, tired, depressed and anxious (attacks).
I also grew breasts over a very short period ~1 month.
Later my HCG started to increase (10 to ~200), then so did my testosterone.
Ultrasound showed bilateral lessions, mri showed gadolinium positive right testicles.
Both were removed RBO. No tumor found though. Leydig cell hyperplasia.

I have just started T patches <Dosages Not Allowed>. (I am 6'3" 210lbs) This gets me through the day i.e. no, or little fatigue.
But I have constant erections, too high labido, greasy skin, some acne.
Mentally ok, but still not as great as before.
I miss the E, or at least I think that was what it was.
Maybe I can dial down the T, and titrate some E in slowly.
(It may also be worth mentioning that I do cycle to a certain degree, and get water retention. Maybe my 6%XX)

Thanks

Felix.


Moderator edit: We do not allow specific dosages, due to our terms of service.

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felixtemin

Do you have any info Cindy?


Many thanks

F
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