desperately seeking help receiving care as a person of undifferentiated sex

i live in new york state, and have had issues for as long as i can remember with insurance companies in regards to my sex. i was born with ovotesticular disorder and mixed genitalia, however, people that are born neither male nor female are not recognized by social security here. and no matter how many times i complain to the insurance, they state that my insured sex must match that of social security, even if that means that i am denied coverage for necessary services.

i have filed grievances. i am always told that i must choose male or female. but when i choose female, i am refused coverage for my “male” genitalia, and when i choose male i am refused services for my “female” genitalia (this way is more expensive). they have also stated that i cannot keep changing it back and forth, and that they cannot make any exceptions in coverage regardless of my diagnoses and/or cpt codes that are submitted to them. this results in me being unable to receive basic care on many fronts.

for example, if i am receiving tests for my hormonal irregularities or anything sex-related, it will be run under either male or female, because either the doctor that orders the labs or the testing center themselves say that the lab sex must match insurance (which only has male or female). this affects the parameters that the tests are gauged against as well as other elements that ultimately have resulted in test results that are inaccurate. in addition, i have been running out of places to do my labs, because they will withold my results or shut down my patient portal account with them because i cannot verify my identity. all of my official documents (outside of social security, because that card does not have a sex listed) correctly match my biological sex of neither male nor female. no matter how many times i come in-person and present them with documents that match my address, name, birthday, etc, they cannot verify my identity, because there is a “”sex mismatch”, as they say. this “sex mismatch” issue has also happened at times when trying to get my medication for epilepsy or bipolar disorder, which should not have any bearing on my sex in the first place.

i have been turned away at almost every planned parenthood i have visited because they were uncomfortable with treating some with both a phallus and a front hole. it takes me years to find a gynecologist that will see me when i move because most of them refuse me even for basic pap smears. the lgbt medical center here (it is called “Evergreen”) advertises in their newsletters that “intersex” people are welcome, alongside gay and transgender people. but when i sought their services, the case manager i spoke to told me that their doctors are not comfortable treating intersex people.

i am truly desperate for help. i have been pressed many times by surgeons to remove half of my remaining healthy genitalia that i have left after my prior procedures and become male or female. they claim my life will be improved in many ways (even though it would result in physical and mental pain for the rest of my life), because it is not “normal” for people in society to be intersexed. but i would rather die as a result of not receiving basic care and testing than to allow myself to be mutilated by people that are uncomfortable with my existence.

i want so much to keep fighting for my life, because i believe that people with birth defects deserve the same rights as other citizens, especially in healthcare. our lives should not be seen as less than anyone else’s. but i am at a loss as to where to go now with this, and my care managers (i have gone through many) do nothing but echo the insurance’s excuses as to why i am undeserving of basic care.

so, please, i am desperate for advice as to who else i can call, who else i can write to, because i clearly have not been calling or writing to the right people. just the basics, really, are all i need in my life right now. thank you.