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Apparently, I've been intersex all this time. :D

Started by Vrekasht, July 26, 2016, 12:00:10 PM

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Vrekasht


Longer intro with more details are here https://www.susans.org/forums/index.php/topic,212536.msg1881897.html.

TL;DR: I found out at 35 that I was intersex by complete, surprise accident.

Male genitalia, nothing physical feature wise that would indicate being intersex, and my parents were amazing and never made me feel like I was 'weird' or that something was wrong when my gender expression growing up was all over the board.

They never made me feel that anything was wrong with my body when, at puberty, I got some things that are definitely not usually associated with male bodies: Soft features, my voice didn't drop all that much (it's 50/50 as to whether it gets read as male or female; if I'm excited it almost always gets read as female), I stayed pretty short (5'6", my brother is 6'3"), I grew breasts (this didn't alarm them as it's somewhat common for boys to temporarily have small breasts during puberty, but they usually go away; mine didn't, they stayed at B cups), my hips got wider, my body hair was pretty sparse, I could only grow facial hair in weird random patches, and my waist has a pretty noticeable tuck to it.
I was also overweight as a teenager and most of my fat distribution was around my hips, belly, and thighs, which is more common in female bodies than in male.
The main social bonus there was that it's 'acceptable' for heavy guys to have breasts, so nobody really mentioned mine, they just assumed I had them because I was overweight.

When I'd ask about it or ask why my brother was tall, square, muscular, hairy, has no boobs, and generally obviously male looking the response was always along the lines of, "That's normal for him, and your body is normal for you. It's not fair to anyone to compare your body to someone else's normal because all bodies are different." so it never really became a major concern or problem for me.

I was healthy and had no complaints, and nobody in my family or friends circle ever made me feel like I was different or strange, so I never thought much of it.



When I was 35, I developed a cyst in my abdomen, sort of to the lower left; I could feel it when I moved and it was a bit tender to press on the area. They did an ultrasound and saw what was assumed to be a benign cyst. I had surgery in 2015 to remove it, and the call I got from the surgeon after the pathology labs had been done was...interesting.

"We got the results back from the make up of the cyst. The good news is that it's not cancerous, but..."

"But?"

"...there's no un-awkward way for me to say this: it's ovarian tissue."

I had had, all my life, an unknown ovary just hanging out and doing normal ovary things, like producing a lot of estrogen, which pretty much explains all of my more feminine looking features.

After a second or two of silence, my response was to laugh and say, "Well, that sure explains a lot of things!"

I then asked if they had noticed anything else strange in there like a whole or partial uterus or another ovary and they said they hadn't noticed anything that looked like a uterus but that they didn't really check for an ovary closely as nobody had any idea what they were removing was a dead ovary, which is a fair enough answer.


They had me visit an endocrinologist for a hormone panel and it did, in fact, find that I had very high estrogen levels; close to what you'd find in someone born female, but not quite.
My testosterone levels were/are on the low end of normal.
I haven't had them tested since 2015, but I'd guess if I really did only have one ovary that my estrogen levels have dropped off a bit since then.

They told me they could fix it with estrogen blockers and T shots or gel, but I declined as this is how and what my body developed with and what it's used to and I don't want to mess with it if there's no good medical reason to do so. They couldn't give me a good medical reason as there's really not anything physically unhealthy about me, so that was that.
She told me the door was open if I change my mind about it though.



I don't know if there's a second ovary hanging out and, honestly, I don't really care. If there is, I hope it doesn't die and get encapsulated like the other one, but if it's there, it's there and lucky me I guess.

I'm kind of glad I didn't get 'normal' testosterone levels as my brother started losing his hair at 17 due to hereditary testosterone fueled male pattern baldness anyway and I like having hair. He's bald at 34, and I still have a full head of hair at 36.

I've also long since had electrolysis on my face as it looked like I had strange blackhead patches at random spots when I'd just shave the few areas that could grow anything but peach fuzz.


I did recently have surgery to remove the breasts, however, as it turned out that there's a strong family history of breast cancer that is estrogen sensitive and I didn't want to risk it; since I'm AMAB and generally identify as/live as male day to day, it was covered as gynecomastia surgery.



I'm still not entirely sure how comfortable I am as IDing as intersex, even though it's technically medically correct, just because I've lived my entire life as just—what I am, whatever that happened to be, but here I am anyway, so hello! :)
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kittenpower

Thanks for sharing; that is very interesting. Some intersex people transition, and some are quite content with their assigned role and do not want to change anything.
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Vrekasht

I credit my parents with me being 100% comfortable with where and who I am as they never made me feel at all abnormal or strange. :)

It seems to have the added affect of, because I'm comfortable with myself and my identity, others are usually more quickly at ease. The only times I can recall being uncomfortable or having other people almost immediately uncomfortable around me were the few periods of my life in which I was trying to be something I wasn't.
In my case, more manly man masculine presenting and, when that didn't work, I tried went off the other deep end with trying to be ultra-feminine. Neither one really worked out well and I spent most of high school pretty miserable because of it.

Once I quit doing that--and really nobody expected it of me, it was an expectation I put on myself during my teenage years when I wanted to fit in and just be 'like the normal kids'--and just settled in with what felt the most natural and normal for me, everything else just kind of fell into place.
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Micki

My experience is that I was born with one testicle and knew straightaway right from birth that I'm Intersex, and then I had an ultrasound too in my early twenties in order to gain more understanding of my inner female parts. I always knew though that I was both sexes. It was really confusing though when I was young. For many years though now I understand it more. I was born like this and I'm thankful for it, and I enjoy the opportunity of understanding both sexes yet still picking and choosing more of female gender role which suits my true self.
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Vrekasht

Quote from: Micki on July 30, 2016, 02:12:10 PM
My experience is that I was born with one testicle and knew straightaway right from birth that I'm Intersex, and then I had an ultrasound too in my early twenties in order to gain more understanding of my inner female parts. I always knew though that I was both sexes. It was really confusing though when I was young. For many years though now I understand it more. I was born like this and I'm thankful for it, and I enjoy the opportunity of understanding both sexes yet still picking and choosing more of female gender role which suits my true self.

It's really interesting how hormones influence development and how one feels about their gender; mine were always so reasonably even that I never felt strongly one way or the other (which is partially why being accidentally misgendered doesn't normally bother me; some days I just go with whatever someone reads me as) and when I had to 'pick one' at puberty I went with what I most physically looked like, which is what I've long since accepted as my normal even if other people don't necessarily understand it.

The people who matter understand it, and that's all that counts. :)
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zirconia

Hi, Vrekasht

I find this fascinating. If it's all right with you, I'd love to know where the cyst was in more detail.

The reason is completely personal—I also had a small cyst appear in the lower abdomen around the same age. The location is roughly 9 cm (3.5") and 6 cm (2.5") to the left of the belly button, apparently below the oblique muscles. According to an ultrasound examination the diameter is around 1.5 cm (5/8") in diameter. I can feel and faintly see the bump from the surface, and it's painful if I press it or do e.g. sit-ups (and rarely spontaneously.)

The doctor I discussed it with said he'd want a biopsy before removing it, but as it didn't look malignant we could probably also let it be unless it grew—so I decided to wait and see. It hasn't changed.

I've occasionally wondered whether it could be  vestigial ovarian tissue, but always dismissed the thought because I didn't notice it in my childhood. Anyway, should it be it would certainly help explain a few things.
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Micki

I have the same thing in my lower left abdomen and left genital region, and it's always been very tender and sore there and into the left area of my genitals.

Insofar as the gender role thing, it was easy for me due to the fact that I've always looked like both sexes combined.
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Vrekasht

Quote from: zirconia on July 31, 2016, 05:03:59 AM
Hi, Vrekasht

I find this fascinating. If it's all right with you, I'd love to know where the cyst was in more detail.

The reason is completely personal—I also had a small cyst appear in the lower abdomen around the same age. The location is roughly 9 cm (3.5") and 6 cm (2.5") to the left of the belly button, apparently below the oblique muscles. According to an ultrasound examination the diameter is around 1.5 cm (5/8") in diameter. I can feel and faintly see the bump from the surface, and it's painful if I press it or do e.g. sit-ups (and rarely spontaneously.)

The doctor I discussed it with said he'd want a biopsy before removing it, but as it didn't look malignant we could probably also let it be unless it grew—so I decided to wait and see. It hasn't changed.

I've occasionally wondered whether it could be  vestigial ovarian tissue, but always dismissed the thought because I didn't notice it in my childhood. Anyway, should it be it would certainly help explain a few things.


Mine was on the lower left abdomen, right around the area you'd normally find an ovary in typical female anatomy. For years, it apparently functioned normally and at some point died.

The cyst that formed around it got to about 4.5cm in diameter before I noticed something was off; at first I just noticed a strange 'pulling' sensation on that side when I stretched, and realized I could feel something like a lump if I pressed the area.

It just felt physically odd, like I just kind of knew there was something there that wasn't supposed to be there (in this case, the cyst, not the ovary). Now and again, if I moved in a way that squished it, I'd get a sharp pain followed by a feeling of tightness in the area.

They ordered an ultrasound and I had one of those moments where you know something is abnormal because the tech was super quiet, wasn't very responsive to questions (she was focused 10000% on the screen) then had to pop out "for a second" to "check with the doctor". The second was more like 15 minutes, and based on the size the doctor ended up recommending I have it removed as it was causing me some pain and there was concern that it might burst (they weren't sure what it was but said it looked like a cyst as opposed to a tumor) and turn into an emergency rather than a routine cyst removal.

When I had the surgery to remove it, they had to widen the incision 3 times because the dang thing burst as soon as the surgeon tried to ease it out of the initial incision so they had to suction and flush me out. Yum.
It wasn't too bad though, 45 minute procedure, and I only missed 3 days of work. Abdomen on the left was a little sore for a few weeks after that, and I did have to mind my stretching where it'd pull the left side for a few months, but other than that, it was an easy recovery.


Quote from: Micki on July 31, 2016, 09:35:53 AM
I have the same thing in my lower left abdomen and left genital region, and it's always been very tender and sore there and into the left area of my genitals.

Insofar as the gender role thing, it was easy for me due to the fact that I've always looked like both sexes combined.

Yeah, I got a bit of luck in that department too; before I had the breasts removed it was easy to pass as a woman if I wanted to, and since I'm a little bit overweight it was just as easy to pass them off as 'fat guy boobs' when I just wanted to be a guy.
When I was thin, however, it was pretty hard to do that as the breasts didn't shrink with weight loss and just became super obvious, which I didn't really like.

In terms of my face though, it could go either way very easily and I like that.
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Micki

I've always felt more female in the most important ways, yet I still like the fact that I have male traits too, so for me personally, I'm happy that I was born intersex. It's how I was created so I'm thankful.
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zirconia

Thank you for the detailed reply, Vrekasht

You say you felt a pulling sensation when you moved. Was the cyst attached to the abdominal wall inside of the abdominal cavity, or somewhere inside the musculature? Sorry for the multiple questions. I just find this most intriguing, and quite honestly think the information would be useful in making up my mind whether I should at some point have more tests done on my own mystery bump...
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Vrekasht

Quote from: zirconia on August 01, 2016, 06:16:57 AM
Thank you for the detailed reply, Vrekasht

You say you felt a pulling sensation when you moved. Was the cyst attached to the abdominal wall inside of the abdominal cavity, or somewhere inside the musculature? Sorry for the multiple questions. I just find this most intriguing, and quite honestly think the information would be useful in making up my mind whether I should at some point have more tests done on my own mystery bump...

It had some slight adhesions to the abdominal wall but nothing that made it securely attached (best guess is it just kind of...wound up there after it died and unattached from wherever it had been prior, they aren't really sure), but their thought was the 'pulling' I felt was more the cyst being squished when I stretched and I was interpreting the extra pressure that caused as a pulling sensation.

Just from my own standpoint, if I find out I have something abnormal internally that has been causing mild issues, and that can be removed and is covered by my insurance to have it removed, I'm more than happy to get it out before it starts causing major problems; I'm not a big 'wait and see' sort when it's a situation where a doctor has found something that looks abnormal or like it shouldn't be there.
At the time mine was removed it wasn't really causing problems, per say, just a strange feeling when I stretched my left side out. Considering it burst as they were trying to remove it, I'm glad I had it removed before it burst on its own and turned into an ER run instead of a scheduled procedure.

As a weird side note, when the ovary was still alive, I'm pretty sure it was actively producing eggs as when I described these "weird pains" I used to get every month or so, the doctor told me it sounded like the pain some AFAB people feel during ovulation. About once a month or so I'd have a few days where I just had a quick, shooting, stabbing pain a few times per day on the lower left where it used to sit. I always just thought I was overdoing something, had pulled a muscle, or that it was some kind of digestive issue.

I did ask if they could tell what caused it to die/turn into a cyst, but they really couldn't form the pathology; it was likely just spontaneous.

The human body is strange sometimes. :D
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zirconia

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