Author Topic: Maybe intersex? I don't know, but it complicates things for me. (TMI inside.)  (Read 429 times)

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Offline hellowombat

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So, I'm a trans boy, I'm 27 and I've been on HRT since I was 15 years old so my experience with estrogen as a dominant sex hormone during adulthood/past puberty is pretty limited. I had top surgery in 2010, I'm having bottom surgery this year. My entire life, including prior to transition and during transition, I have developmentally not met puberty/sex-related characteristics for my birth assignment.

I have had my chromosomes tested (I am XX), but beyond that have not really had much in the way of examination done on my organs, internal or external, and part of that is actually DUE to some of the concerns I have. I do have a vaginal opening, but it is SMALL. I have attempted to have a gynocological exam in the past, but the doctor could not even get a good look even using a speculum sized for an actual infant. She was able to insert a swab to do a PAP test, but she was kind of reaching blindly. I do have a uterus but it is extremely close to the entrance based on what she was feeling and tilted, so the opening is small and it is shallow inside. I have never been able to have any kind of penetrative sex with it.

I hit puberty at age 8, I started menstruating, I got a lot of body hair, my voice deepened, I became broader. I did have some breast growth but very small (small A cup, I never wore a bra prior to when I started binding). My hips remained narrow, I didn't really ever experience any fat distribution in the typical areas (hips, bottom, breasts, etc.) It was really distressing, not because I had a particular issue with anything that was happening to me (though the bleeding I could've lived without) but because everyone reacted to it so poorly and made me feel so horrible and ugly about it. People would argue with me about whether or not I was "really a girl" in school. When I had my hormone levels tested prior to starting testosterone at age 15 I was not told that there was anything abnormal about them, but I don't see how that can be the case given what puberty was like for me.

My transition experience was extremely easy. Like easy enough that I have trouble relating to other trans guys. I have always passed. I'm extremely grateful, but it has been sort of isolating in that I do not share experiences with either cis men or trans men, and I have to reach blindly to find my way about medical care as so much of it cannot or does not apply to me. I am concerned about my upcoming surgery and how my very small vaginal canal might make some things like hysterectomy more difficult. My urethra is also located at the base of my clitoris/penis, rather than above the opening to the vagina as is more typical. Will this affect my urethral lengthening procedure? I have very good growth (right around 3"), but not very much labial tissue and I am concerned about how that will translate into the materials needed for surgery (scrotoplasty, urethral lengthening again...)

Has ANYONE here experienced any of this and do you have anything that you can offer me to guide me when moving forward, or is there anything I can ask a doctor to look for specifically if I were to ask about it? I peripherally worry about things like cancer, as my grandfather died of prostate cancer. Is that something I need to worry about? Do I have parts that could be subject to those concerns? Thanks and sorry for the text wall, it's just somethign that has been on my mind more frequently as I get nearer to bottom surgery.

Offline Doreen

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So, I'm a trans boy, I'm 27 and I've been on HRT since I was 15 years old so my experience with estrogen as a dominant sex hormone during adulthood/past puberty is pretty limited. I had top surgery in 2010, I'm having bottom surgery this year. My entire life, including prior to transition and during transition, I have developmentally not met puberty/sex-related characteristics for my birth assignment.

I have had my chromosomes tested (I am XX), but beyond that have not really had much in the way of examination done on my organs, internal or external, and part of that is actually DUE to some of the concerns I have. I do have a vaginal opening, but it is SMALL. I have attempted to have a gynocological exam in the past, but the doctor could not even get a good look even using a speculum sized for an actual infant. She was able to insert a swab to do a PAP test, but she was kind of reaching blindly. I do have a uterus but it is extremely close to the entrance based on what she was feeling and tilted, so the opening is small and it is shallow inside. I have never been able to have any kind of penetrative sex with it.

I hit puberty at age 8, I started menstruating, I got a lot of body hair, my voice deepened, I became broader. I did have some breast growth but very small (small A cup, I never wore a bra prior to when I started binding). My hips remained narrow, I didn't really ever experience any fat distribution in the typical areas (hips, bottom, breasts, etc.) It was really distressing, not because I had a particular issue with anything that was happening to me (though the bleeding I could've lived without) but because everyone reacted to it so poorly and made me feel so horrible and ugly about it. People would argue with me about whether or not I was "really a girl" in school. When I had my hormone levels tested prior to starting testosterone at age 15 I was not told that there was anything abnormal about them, but I don't see how that can be the case given what puberty was like for me.

My transition experience was extremely easy. Like easy enough that I have trouble relating to other trans guys. I have always passed. I'm extremely grateful, but it has been sort of isolating in that I do not share experiences with either cis men or trans men, and I have to reach blindly to find my way about medical care as so much of it cannot or does not apply to me. I am concerned about my upcoming surgery and how my very small vaginal canal might make some things like hysterectomy more difficult. My urethra is also located at the base of my clitoris/penis, rather than above the opening to the vagina as is more typical. Will this affect my urethral lengthening procedure? I have very good growth (right around 3"), but not very much labial tissue and I am concerned about how that will translate into the materials needed for surgery (scrotoplasty, urethral lengthening again...)

Has ANYONE here experienced any of this and do you have anything that you can offer me to guide me when moving forward, or is there anything I can ask a doctor to look for specifically if I were to ask about it? I peripherally worry about things like cancer, as my grandfather died of prostate cancer. Is that something I need to worry about? Do I have parts that could be subject to those concerns? Thanks and sorry for the text wall, it's just somethign that has been on my mind more frequently as I get nearer to bottom surgery.

You sounds like a 'opposite' mirror of me only I'm 46xy DSD. And the rest is similar except going girl for me. Keep in mind a lot of times genetics won't find the answer.. something geneticists won't tell you until you've gone through the gambit & seen the pamphlets.  A prostate is relatively easy to locate if you are concerned you might have one.  A MRI or ultrasound of the bladder / pelvic region.  They can also tell what your organs look like.  Mine are confusing to dozens of doctors apparently.  I also arguably have a uterus beneath the pelvic floor relatively close to the vagina itself.  A simple blood PSA test too can confirm elevated prostatic enzymes.  If you don't have a prostate though, no worries in that department. 

As far as menstruation goes I just have cramping, very scant bleeding if any.  I'm seeing a specialist ob/gyn to finally discover (hopefully) whats going on.  I've had multiple messages on this topic, so I won't bore you by posting my images.

My best suggestion is to speak to physicians that actually deal with "mullerian anomalies".  MRKH is also a possibility in your situation, though precocious puberty is often a symptom of CAH (another intersexed condition).  They can test for that via endocrinology.   

I won't list the doctor I've scheduled my appointment with yet, but if you mail me privately I'll provide her name & contact info.  Maybe she can (or can't) provide the answers you seek. 

Offline RickiM

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The experiences that you talk about are really similar to what I have experienced so I do know what it is like. I know for a fact that I was born intersex because my pediatricians told me and because I did have a procedure on my genitals when I was an infant. For you, due to everything that you mentioned, it certainly seems like you are intersex, however, I obviously can't make any assurances to you about that without knowing you. This is something that you can maybe figure out on your own or research it with professionals and with people who know you personally and know your history.

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