I'm trying to find answers about a possible intersex surgery in childhood. Do I have a case?

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(This is hard for me to write. I'm putting this in the "sexual health" section, because it's about my sex characteristics, and there was nothing specifically for intersex conditions.)

Hello all, I have ambiguous sexual characteristics and I've been doing research, and I think I might have had surgery as an infant. I've asked my parents if there was doubt about my sex as a child (the ambiguity that's currently there isn't drastic, and it isn't super obvious if you don't know what to look for), and they seemed not to know of anything but I still think maybe they didn't notice it, maybe it was framed as something else, maybe doctors hid it, etc. The hospital I was born at is closed now, but I think I can still get my records. I haven't tried yet, I don't know how to start the conversation with my parents.

I'm going to use heavily medical language, because that's how I know to describe this. Here are the reasons I think I might have had something (TMI warning):

-I have no raphe along the underside of my genitals. I understand that the raphe is the result of the natural fusion of the urogenital sinus, and I have some other reasons to believe that didn't fuse all the way.

-I have a midline dimple, which I've heard is related to surgeries done on bifid scrotum etc. I used to think this was the raphe, but in pictures I've noticed it's nothing like that. I also seem to have no scrotal septum.

-I have some symptoms known to be complications of hypospadias surgery and similar procedures, like fistulas (every once in a while I'll get one or two along the underside of the phallus), dribbling and burning with urination, cramping with urination, cramping and burning for no reason, etc. Again, I have no raphe or frenulum here.

-I have an intense fear of people seeing my genitals and of being examined (just in general, but especially genitals), and of letting things too close to my genitalia. I've also always had an intense hatred and fear for my genitalia. I've heard from other intersex people that similar traumas are very common from this kind of a procedure.

-I have a vague memory of either overhearing or being told a story about a baby who "had" to have surgeries similar to the ones I might have had to confirm their sex.

(Just to clarify, I do have other traits that confirm my intersexuality, like micropenis, loose labioscrotal flaps that circle my phallus, odd positioning of things, partial absense of a vas deferens, delayed and mixed puberty, gender dysphoria, etc. I have intrascrotal gonads but I neither know what kind of gonads they are nor whether or not they were surgically moved into that position.)

So, do I sound like I have a reason to ask my parents and doctors about this?

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5 Replies

  • Posted

    Wow,

    You have really done some research!

    How long have you had this feeling?

    I would absolutely say you have a reason , and of course this should be on your medical records regardless of whether that hospital has closed down or not, you have a right to access your own records on any day.

    Maybe your parents are frightened about your reaction?

    But ask ask ask, it's the only way you will get answers. You will drive yourself crazy with this buzzing around in your head with no answers x

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    • Posted

      Do you have any tips on asking? I'm not very good at starting conversations and we never talk about this kind of thing...it's been overwhelming. I feel like my parents would tell me anything, but I don't know anymore...I'm so nervous about it. If it's there, that means something horrible happened to me. If it's not there, I was wrong and I'm essentially back to square one.

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  • Posted

    Hi Casey,

    Sounds like you have a lot going on.  Be careful not to get too manic about this issue.  It will be hard not to since it sounds like a major component in your self identity.

    About litigating this:  I work for a person injury attorney but I'm not soliciting your business.

    First of all, the location of your "claim" is needed to be known.  You will need to find an expert in the legal system, i.e. an attorney.  It's better to experience medical malpractice in some ares than others.  Are you in the USA?

    There are some attorneys that will not charge services for your first visit.  You might have to "shop" your potential case with a number of attorneys.  You might not like the first attorney you speak with.  

    You can save yourself a lot of time and stress and cover a lot of ground by a senario to send to an attorney.  Lawyers her stories endlessly from perpective clients.  Many have so many cases that they can not take any more cases.  So, you may want to ask if the lawyer is accepting any new cases.  If not, ask for a referral to an attorney who is.

    You will need a 'medical malpractice lawyer'.  Make sure you get a lawyer who speializes is similar cases.  A lawyer who specializes in perscription error most likely will not serve you well.

    You might want to check out some websites or Facebook Pages, etc. for people who are dealing with the same thing you are and network with that group.

    But, I'm concerned about your mental health.  You may have a very legitimate case but there also seems to be a lot of theater going on in your head.  You need to handle your stress level since if your nerves burn out you won't be able to sustain the energy you will need to 'connect the dots' with your identity issue.

    Ultimately, if you have a case of any kind, you will have to determine what your 'damages' are.  How has your life been negatively impacted by this surgery.

    Also, most states have "statutes of limitations" limiting the time a civil suit can be filed. In most cases these "statutes of limitations" can start tolling when you become aware of damages.  I caution about sharing this informaiton with a therapist who might be recording your story for defense attorneys to discover.  This issue is something an attorney woudl know about.  It's different in each state.

    Another concern that I have is including your family.  I have been involved with a personal issue, myself, and decided to leave my family out of it until it was all over.  I'm glad that I did because it would have worn on them.

    Feel free to ask me any questions.  There is light at the end of every tunnel and hopefully you will find yours soon.

    My best,

    DL

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    • Posted

      Oh, by 'case', I meant do I have a real reason to ask a doctor, I don't currently intend to sue...though I'm very passionate about these issues, and if I do find something, I'll keep this in mind in case I need it, thank you.

      As for my mental health...what's done is done, I know finding something and not finding anything will both be more negative than positive. At least finding something would prove that I was right, and I wouldn't have to go looking for potential causes anymore.

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  • Posted

    Forget the malpractice issue. there is tremendous uncertainty in being a plaintiff in a law suit. Cases drag on for years and can place a negative emotional burden upon the plaintiff.

    I suggest you seek a specialist in urogenital surgery to examine you. Based on that opinionseek a referal to a health professional who can assist yoi in navigating your uncertaity about your sexual identity.

    my heart goes out to you.

    good luck in resolving these uncertainties.

     

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