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Intersex Issues


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Hi, now I’m new to this group but after my introduction some people have suggested that my problem is that I’ve an intersex condition. I have in the past gone through all the tests and was diagnosed with an intersex condition although acceptance has been difficult to swallow but I was happier with this diagnosis than being found transgender. Problem is I don’t understand how to live as an intersex person ? My doctor always told me as a child to take hormones for the rest of my life and live as female. I never accepted this and tried to carry on as male, problem is my body shuts down and I almost die without taking estrogen it’s like I’m dependent but I refused to take it full time and only ever when unwell, the drug was never designed to be used this way so I’ve abused it to avoid female development and side effects that come with it. Did I make the right decision, or have I caused myself more pain for my refusal to listen to my doctor and take the drug daily for life ??? I would be grateful to hear your own stories and suggestions regarding this and appreciative of any advice from other intersex people and how they dealt with their diagnosis and lived their lives from when they found out. 

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Hi @Ziggy1234 . Welcome to this community. I'm not intersex (that I know of), but I'd like to help if I can. First of all, I wish to suggest you try to not see your intersex condition as a "problem". I understand that may be easier said than done, and I acknowledge that I can only understand intersex condition as far as a non-intersex person is able. It's just that, in my life, in many areas, I've found self-acceptance to be a path to greater peace.


I would imagine that most intersex people do not know how to live as an intersex person. There's no social normativity around it, very few people have even heard of it or know very much about it. I wish this were different - I also wish everyone were free to just be. You will have to find your own way of being. While I'm not intersex, I am trans nonbinary, so I do relate insofar as not fitting into social norms. 


From what I understand, the typical treatment for intersex is for doctors to insist that the person be assigned one binary sex or the other, and to be socialized thusly. That seems to be what happened in your case. This treatment is archaic and ignorant, is now considered to be abusive, and there are movements to bring greater awareness to the unique experience of intersex people with healthcare. Have you seen the documentary movie "Intersexion"? I found it to be quite excellent and illuminating. 



I hope you will absolve yourself of guilt for not following the doctor's orders. From what I understand, you did it not out of stubborn defiance, but for your own sanity and survival - if you do not identify as female, then following the doctor's suggested course could be devastating. May I ask, why do you need estrogen to keep your body alive? Perhaps you can find a healthcare provider who can adjust your dose so that you're getting what you need, but not so much that you're experiencing full on feminization. 


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Hi, Ziggy.  When I joined this site, I didn't have much idea that I was intersex.  I've always been "female."  But dealing with my gender issues led me to a LGBTQ+ friendly doctor, and I found out a bunch of new things about my body.  I'm a medical mystery...a genetically "normal" girl with a prostate, weird plumbing, and some other unique stuff going on.  It changed my outlook and narrowed the options available to me. 


I don't think that refusing drug treatment is necessarily a mistake.  I have a mild hormone imbalance and was offered drugs, but I told the docs "no thanks."  For personal and religious reasons, I avoid medical treatment if it isn't absolutely necessary.  However, if going without treatment is making you really miserable or threatening your life, that's an issue to think seriously about.  I can't say whether following the doctors' advice is the right thing to do or not.  Just ask yourself...how's it working for you? 


For now, my solution has been to transition somewhat toward the masculine.  I'm using testosterone gel to adjust my external intimate anatomy a bit.  I dress androgynously, and I keep my hair short-ish but fluffy.  Due to my young look, I pass as a feminine-looking teenage boy.  I'm mostly comfortable with that for the moment.  My partners accept me in my boy form, and it has been emotionally and sexually comfortable. 


Like you, I'm not really sure how to live outside the binary.  If I'm not a girl, then I guess I'm a boy.  I can't figure out how to be in the middle as both or neither.  Hurts my brain to try.  However, there's some folks on this forum who identify as non-binary, and you might talk with them and see what insights they might have.  You can always PM one of them (or me) for more private discussion if you need.  🙂



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Thank you for taking the time to give me such a long an detailed response.

Firstly i became really unwell when I was a child and ended up in hospital, my testosterone level was zero but my estrogen level was really high abnormally. The doctor tried every known test to balance my levels but nothing worked on the testosterone side and I was becoming more and more unwell and was in danger of slipping away so they tried fixing me through the estrogen side and it worked and I got better much to his amazement. 
Now there were a few significant events leading up to this. My sister used to leave her birth pills all over the house and I ate them but I also found a whole packet in her room and ate them in one go, secondly a child as young as I was didn’t know I couldn’t fix my testosterone level and the doctor kept crying about it so I walked  round the hospital looking for some and found nothing. A staff member saw me searching and asked what it was I was looking for I said so he open a locked cabinet with a key above the height of a child and got a bottle of testosterone and needle and syringe and gave it to me obviously me thinking I was fixing myself managed to put it all together and inject the whole thing into my arm. The only thing I didn’t know is if you overdosed on it that it turned into estrogen !! Now out of my curiosity I later had tests to confirm if this had caused my problems or something in my body beforehand and got a intersex diagnosis but none of this helped. The reason estrogen works for me is because it’s the only known drug to put my health right and is the only one that has ever worked. I can be almost dead and then take it and be fine again, no other drug has ever produced such good effects as estrogen at making me well again. 

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