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I suspect I may be intersex, I don't know what to do or how to confirm my suspicions.


magic8ball

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Hi, this will be my first post on this site. I've never really interacted much with trans community or ever met an intersex person in general. I suspect I may be non binary but I don't particularly know how to go about dealing with that either.

 

However, I recently have begun to have some suspicions I may be intersex after some recent research. I don't know if I'm reading too much into things or if I'm misunderstanding what intersex is, or if I actually should try to see a doctor to confirm. If anyone has answers I would deeply appreciate it.

 

I guess I'll start by describing my experiences and the conditions I've been dealing with my whole life. I started puberty at around age 8 or 9, which as you can imagine for a young girl was quite mortifying. I don't believe that's exceptionally young or anything, but I don't know anyone else who started that early. It's also when I began to experience lots of acne, body hair, and even some hair on my face (although I have pretty light hair so it thankfully did not show too much). My mom took me to a dermatologist, where they essentially just told me to shave and put me on some acne treatments. None of them really worked, and a few years ago the only thing that seemed to work was a medication called spironolactone which I'm still on however I still occasionally experience acne and facial hair while on it but it's very manageable now. The dose I'm on is apparently very high for someone my height and weight.

 

Another thing of note is I don't experience periods all that often. I would think that I may experience a period three times a year or less since I started them very young. I also don't have breasts really, there is a bit of something but not much at all. I have a bit deeper voice than most other women I know.

 

I learned what intersex people were when my mom told me as a kid I had to have a procedure done because as an infant because I was born with I guess the uh, hole to my vagina being blocked or like sealed together almost. I also think I might have an enlarged clitoris but I genuinely have no idea. After learning this I did some research and stumbled on the word intersex and I could relate to some of the symptoms and conditions people talked about, as well as some common experiences for intersex people born female. I don't know if that makes me intersex at all, I guess I don't even really know what would constitute an intersex person.

 

I guess I don't know what to do or who to ask for advice. The weird thing about it all is that in private I actually kinda like it. Like I wish I wasn't on spironolactone because the facial hair and the deeper voice and everything kinda made me feel strangely good. I was really self conscious about it in public before I figured out ways to manage it, but I still kinda miss it.

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  • Forum Moderator

Hi, @magic8ball.  Welcome!

 

It certainly sounds like you have reason to be suspicious about being intersex.  A doctor might be able to tell.  They would be able to refer you to a specialist if they don't know themselves.

 

You mother might be a person to ask.  It could be a difficult conversation, but she was there and should remember what she was told when you were born.

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  • Admin

Your family doctor or HMO genetic counseling service would be a first step.  Another possibility would be the nearest university with a Medical School and medical research facility. Another would be your local chapter of Planned Parenthood.

 

I have talked with some young people with symptoms like yours, and they have been diagnosed with a specific condition that falls into the Intersex category.  At your age, the irregular periods should have been a signal to some part of your medical care team if you brought them up, so it is imperative that you take what you said to us and give it to them. 

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I'm intersex, assigned female at birth.  I didn't really know until last year, when a visit to a good doctor gave me a lot more information.  

 

Based on your anatomical description, you might be intersex.  Like you, I didn't get breasts.  Enlarged private features, and somewhat incomplete female reproductive function. Some intersex people have atypical hormone levels that can affect puberty. 

 

From what I have learned, it seems that being intersex looks and feels different for each person.  My body came with some crazy and unique plumbing in spite of apparently average female chromosomes.  

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10 hours ago, awkward-yet-sweet said:

I'm intersex, assigned female at birth.  I didn't really know until last year, when a visit to a good doctor gave me a lot more information.  

 

Based on your anatomical description, you might be intersex.  Like you, I didn't get breasts.  Enlarged private features, and somewhat incomplete female reproductive function. Some intersex people have atypical hormone levels that can affect puberty. 

 

From what I have learned, it seems that being intersex looks and feels different for each person.  My body came with some crazy and unique plumbing in spite of apparently average female chromosomes.  

Would it be invasive to ask what process you went through with the doctor to find this out? Did you see an OBGYN to discover this, or have a pelvic ultrasound or something similar?

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I went to an OBGYN who waz recommended for being LGBTQ+ friendly, and at least somewhat knowledgeable about transgender issues.  Since I live in a rural area, I had to travel to a big city for a doctor like that is available.  My intersex body looks close enough to female normal on the surface that the doctors I saw in my youth had not figured out why I'm different.  

 

I ended up having multiple scans, including pelvic ultrasound.  My process is likely somewhat different from what yours would be. My internal anatomy is unique enough that initially my doctor was concerned about cancer.  It turned out that I'm fine, but what was supposed to be a couple of appointments turned into a couple of very tense days. 

 

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1 hour ago, awkward-yet-sweet said:

I went to an OBGYN who waz recommended for being LGBTQ+ friendly, and at least somewhat knowledgeable about transgender issues.  Since I live in a rural area, I had to travel to a big city for a doctor like that is available.  My intersex body looks close enough to female normal on the surface that the doctors I saw in my youth had not figured out why I'm different.  

 

I ended up having multiple scans, including pelvic ultrasound.  My process is likely somewhat different from what yours would be. My internal anatomy is unique enough that initially my doctor was concerned about cancer.  It turned out that I'm fine, but what was supposed to be a couple of appointments turned into a couple of very tense days. 

 

Oh wow I can imagine that being really scary. I'm glad you're doing well. Being intersex sounds like the best possible outcome from that lol.

 

Thank you though, I made an appointment with an OBGYN in my city. I really need to get the menstruation stuff checked and out of the way though because this has been going on since I was little kid and I've never bothered to talk to a doctor about it really just due to embarrassment and fear because I had a sense that my anatomy might be slightly different and for a long time I didn't want anyone to see. I feel more prepared to go forward with going to the doctors now though, and I may ask about a pelvic ultrasound because I have some symptoms of PCOS regardless.

 

Thank you so much for your help, would it bother you if I possibly reached out in the future with other questions if anything comes up? You're the only person online who I've seen talk about that process openly and it's kinda a relief to hear that someone else seems to be experiencing a somewhat similar situation as an adult as well.

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  • Admin

@magic8ball  Get a couple more posts made, and then you will be able to use our Personal Mail system to other members.  You have 3 posts as of this one, and need 5 to activate the PM system.

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1 minute ago, VickySGV said:

@magic8ball  Get a couple more posts made, and then you will be able to use our Personal Mail system to other members.  You have 3 posts as of this one, and need 5 to activate the PM system.

Thank you for letting me know! Forgot to respond to your previous post as well, thank you I contacted a doctor and I'm going to attempt to sort this out in the coming weeks. Deeply appreciate the help and support I've received on this forum so far.

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  • Admin

No response needed, I read what you reported you had done.  I am glad you are having a good time here and getting information you need.  I have had a couple of tests involving my actual genetic structure as well. One pinpointed a double allele gene for a blood issue. Interestingly enough it is a condition that is twice as likely to happen to Trans folks as the Cis population.  The other found an area where my Testosterone receptors were not going to function 100%  I did not mention the PCOS but had been thinking about it.  My former daughter-in-law had a stress induced battle with it, although I have 3 grandchildren from she and my son's marriage.  (They are still co-parents.)   I was just reading an article on Turners Syndrome which is a genetic problem for women involving extra X chromosomes and it also produces a symptom or two like you described.   

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7 hours ago, magic8ball said:

Oh wow I can imagine that being really scary. I'm glad you're doing well. Being intersex sounds like the best possible outcome from that lol.

 

...would it bother you if I possibly reached out in the future with other questions if anything comes up?

 

Yeah, it was scary.  I don't handle medical stuff well anyways, so I definitely didn't go alone.  Even before my appointment, I let my doctor know that my husband and GF would be with me.  She wasn't bothered by my need to remain in near constant physical contact with them.  If you have any worries about it, make sure you let your doctor know so they aren't surprised, and hopefully you can get assurance that your needs will be accommodated.

 

I definitely get the embarrassment and fear!  When I was dealing with puberty, the doctor mentioned to my mother that my anatomy looks a bit different.  My mother proceeded to traumatize me about it, telling me that no man would marry me (among other insults).  I stayed away from doctors for years because of this, and that fear kept me from having a relationship of any kind until I was 26.  I couldn't get past the fear of being rejected, so it

took me even longer to become comfortable in an intimate relationship.  I've mostly overcome it at this point. 

 

If you want, you can PM me.  As I've said, our experiences/circumstances are likely to be different, but I'm happy to share if you find it helpful.  😊

 

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  • 2 months later...
On 3/3/2023 at 5:42 PM, magic8ball said:

Hi, this will be my first post on this site. I've never really interacted much with trans community or ever met an intersex person in general. I suspect I may be non binary but I don't particularly know how to go about dealing with that either.

 

However, I recently have begun to have some suspicions I may be intersex after some recent research. I don't know if I'm reading too much into things or if I'm misunderstanding what intersex is, or if I actually should try to see a doctor to confirm. If anyone has answers I would deeply appreciate it.

 

I guess I'll start by describing my experiences and the conditions I've been dealing with my whole life. I started puberty at around age 8 or 9, which as you can imagine for a young girl was quite mortifying. I don't believe that's exceptionally young or anything, but I don't know anyone else who started that early. It's also when I began to experience lots of acne, body hair, and even some hair on my face (although I have pretty light hair so it thankfully did not show too much). My mom took me to a dermatologist, where they essentially just told me to shave and put me on some acne treatments. None of them really worked, and a few years ago the only thing that seemed to work was a medication called spironolactone which I'm still on however I still occasionally experience acne and facial hair while on it but it's very manageable now. The dose I'm on is apparently very high for someone my height and weight.

 

Another thing of note is I don't experience periods all that often. I would think that I may experience a period three times a year or less since I started them very young. I also don't have breasts really, there is a bit of something but not much at all. I have a bit deeper voice than most other women I know.

 

I learned what intersex people were when my mom told me as a kid I had to have a procedure done because as an infant because I was born with I guess the uh, hole to my vagina being blocked or like sealed together almost. I also think I might have an enlarged clitoris but I genuinely have no idea. After learning this I did some research and stumbled on the word intersex and I could relate to some of the symptoms and conditions people talked about, as well as some common experiences for intersex people born female. I don't know if that makes me intersex at all, I guess I don't even really know what would constitute an intersex person.

 

I guess I don't know what to do or who to ask for advice. The weird thing about it all is that in private I actually kinda like it. Like I wish I wasn't on spironolactone because the facial hair and the deeper voice and everything kinda made me feel strangely good. I was really self conscious about it in public before I figured out ways to manage it, but I still kinda miss it.

I was born intersex, and have plumbing for both. My parents decided to leave things be and assigned me male, opposite of your case. 

Puberty decided that the doctor and my parents made the wrong choice. That is basically when things do go south when choices were made in error. 

In my case I grew curves and breasts, I still have them. 

Lack of muscle mass and facial/body hair took me to a sports doctor in my 20's. I did 2 years of testosterone treatments that really only made me gain muscle and facial hair. I still look like a woman. 

You need to talk to your doctor about things. He will order several tests including an ultrasound and chromosomes test. 

There the doctor will change your records to reflect intersex, although it doesn't really changed anything much more than that. 

In my case I have just accepted that I am "female", that's how I look and feel. I'll live what my body wants to lead me. 

Perhaps in your case your body is leaning the other direction, and the body knows best. It knows what it is. 

Might go see counseling as well. I did 😉

 

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