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Advice for treatment


chipped_teeth

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Hi there. For the last several years I've been questioning whether I have an intersex condition, but I've been hitting dead ends and would like advice on how to move forward. Whatever is going on is causing me a lot of physical pain, not even counting the bullying and harassment I recieved as a kid. I'm providing a lot of details in hopes that somebody recognizes the symptoms or knows what to look out for.

Around 5 or 6 I started growing a lot faster than other kids, by 11 I was already being mistaken for a young adult and was one of the tallest kids at my elementary school. I also showed signs of hormone imbalances, I was assigned female at birth but by that age also had dark and thick body hair and bad acne, a C cup breast (I was not overweight at the time, they stopped growing size D at 13), moodswings, fatigue, having irregular and debilitatingly painful periods, and both opposite extremes of sex drive. (these symptoms never went away and some have gotten worse).

I've been told in vague words that reproductive issues run in the family (endo, pcos, miscarriages, one of my cousins has an unspecified "birth defect") and that I would probably have difficulty bearing a child. I also remember that I was brought to a gynecologist in middle school and remember being offered some kind of intensive hormone therapy, but my mom insisted I just take birth control, as it was cheaper. This only made me gain a lot of weight a lot faster and have fewer but heavier periods, so I was not on them for long. Every time I asked for further details about the test results or what issues specifically ran in the family, I've been brushed off or told she didn't know. I also found no record of these tests on my online patient portal. I've also been subject to severe medical neglect in several other ways, so this isn't unusual persay.

I started testosterone therapy on my own a couple years ago, and within I am not joking, a week, my acne was already clearing, my voice began getting deeper, and bottom growth was visibly and tactiley noticeable. When taking the preliminary blood tests, the doctor did comment that I had more testosterone than expected already. Additionally while on T I was finally able to eat a normal amount without gaining weight, which I have never been able to do, and I had much fewer problems with joint pain and fatigue. I was only able to continue T for less than a year, as I stopped being able to afford it, and since then my acne has come back worse and so has the fatigue and weight fluctuation, plus the pain that radiates throughout my entire body while menstruating...

Since being an adult I have tried to seek more help, once after being rushed to the ER with lower abdominal pain that I thought was an organ bleed, but while I was out my mom told the doctors that I was abusing laxatives (not true!) and so they only treated me for dehydration. I was also scheduled for and driven to a gynecologist appointment without my consent, where asking for some kind of genetic test or ultrasound only led to being pressured into a pap smear that I wasn't ready for. I'm really at the end of my rope, it's like nothing I ask will get me any answers, but even if I don't have an intersex condition I would like to know if there is some other hormonal disorder causing me all of this pain, fatigue, and anxiety. Not even asking to look into PCOS or Endometriosis has gotten me any real help, in fact having taken testosterone at all seems to have convinced doctors that I'm okay with it if I do have cysts or Endo.

One of the problems I've had is that my mom is nosey and lacks boundaries or respect for my autonomy due to me being disabled, but when I make appointments and pay for them by myself, I usually don't have any trouble with these tendencies.

I guess I need advice. Should I schedule an endocrinologist? Should I go to a different gynecologist or will I be strongarmed into a pap smear again? Is there some kind of secret code word that doctors have to hear before they'll xray or ultrasound your reproductive system for you? Any help at all is appreciated.

 

'm sorry if any of this is worded in a crude or gruff manner, as you might imagine it's been a frustrating thing to deal with for all of this time

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  • Admin

My first thought here is to contact a local university's medical school / teaching hospital and consent to being involved in one of their research projects.  You are giving symptoms from several Intersex conditions but without testing that the medical facility could test you for without the routine and invasive  procedures you do not want.  I am sad to say this, but it also sounds like you need to investigate ways to get away from your mother and into a better living environment.  Your mother seems to have serious hangups about your potential IS, those are usually from a sense of shame and maybe blame for them, especially since you say you are otherwise disabled as well.  I will give a suggestion that you try and contact a local LGBTQ Community Center since they deal with professionals who know the Trans and IS communities better than most medical folks do. 

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7 hours ago, VickySGV said:

My first thought here is to contact a local university's medical school / teaching hospital and consent to being involved in one of their research projects.  You are giving symptoms from several Intersex conditions but without testing that the medical facility could test you for without the routine and invasive  procedures you do not want.  I am sad to say this, but it also sounds like you need to investigate ways to get away from your mother and into a better living environment.  Your mother seems to have serious hangups about your potential IS, those are usually from a sense of shame and maybe blame for them, especially since you say you are otherwise disabled as well.  I will give a suggestion that you try and contact a local LGBTQ Community Center since they deal with professionals who know the Trans and IS communities better than most medical folks do. 

Thank you very much for the advice, I have been attempting to contact local LGBTQ organizations (and making steps to move out with some roommates in the nearish future), though understandably they're choosey about how much information they give you when you ask about meetups and support groups. I will continue looking into it. I may need to see a geneticist for another unrelated condition I am being evaluated for, so there's potential I will receive answers from that as well. Again, thank you!

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Good luck @chipped_teeth . I agree with Vicky's advice, and just wanted to lend you more emotional support. I hope you'll be able to gain more autonomy so that you'll be better empowered to advocate for yourself. 

 

My opinion is that unless you get a specific recommendation for a gynecologist who has experience with intersex conditions, you may likely risk being "strongarmed" into a pap smear if you have not had one recently - gyns will necessarily tend to operate within their own traditional treatment paradigm. Consider also reaching out to some intersex organizations such as these:  https://interactadvocates.org/resources/intersex-organizations/ to see if they can advise you on knowledge doctors in your area. 

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