cn: infant genital mutilation, sexual assault, gatekeeping, puberty, anatomy discussion

Someone in our system, this morning, challenged us to write about our experiences in a way that is devoid of identity, because they think it might help highlight some things that are at work here.

Most of the rest of us are amenable to that idea, so here we are!

We are, however, going to start with one identity reference, because all of our experiences are in contrast to that, and it continually affects our life in profoundly painful and dangerous ways.

When we were born, a clinician measured the length of our phalloclit, which just barely made it past a certain mark, and declared us to be male. And then we were given a circumcision. Then our foreskin started to grow back, so they did it again. Nice way to start life, eh?

That trauma may have exacerbated things quite a bit. We cannot deny that. However, even though our first inklings of physical dysphoria were originally centered around our genitals, and how much they traumatized us by their existence, it also extended to our face, our hair, and other parts of our body, before we even had any sort of ideas about gender.

It got significantly worse during puberty. We were never really all that stinky in terms of underarm body odor, but as testosterone affected us, the smell of our own skin started to repulse us and make us feel wrong (this is something we noticed in 5th grade when everyone was instructed to put their heads down on their desks for relaxation time while we were wearing short sleeves, face against arm). Later, body and facial hair also hurt us quite a bit, though we embraced it as a way of masking some of our other features because, due to our birth assignment, it was socially safer for us to have beard and chest hair than the breasts and hips we were developing.

Our breasts and hips didn’t get as big as we’d have really liked, honestly. They didn’t give us dysphoria, either. They were just noticeable enough to get us sexually assaulted every PE in the boy’s locker room in 6th grade.

We also stopped growing in height long before everyone else who was assigned male stopped growing. In fact, a couple people assigned female kept growing after we stopped growing. We’d still gotten too tall for our dysphoria, but when our height plateaued, that gave us relief.

It turns out that our low BO, breasts, hips, and growth pattern were the result of somewhat lower testosterone and somewhat higher estrogen in our body than people typically assigned male at birth because we also have severe endometriosis.

We didn’t finally learn that we had endometriosis until we started seeking transitional healthcare to treat our dysphoria in our 40s. And we learned it the hard way, through a lot of pain and suffering, peeing out blood clots on a strict monthly basis, and then convincing our doctor to try treating it with a constant dose of progesterone. But the only clinician to even take it seriously was the endocrinologist we saw at Seattle Children’s Hospital’s DSD clinic, who suggest it was the problem.

We were lucky in a lot of ways. We lived in Washington, and we have moved to Oregon. Both states are pretty accommodating when it comes to changing your gender marker on record. They’re still not perfect, though. Currently, both medicaid systems ask for your sex assigned at birth, and they’re intersex-phobic about it, too. There’s no “X” for that part of the form.

The problem with that is that those designations are used to decide which medical care they will cover for you. And insurance companies are not up to date on what endometriosis is and who can get it. It is still seen as a “strictly female condition”.

In order to continue to have our endometriosis taken seriously and treated, as best as endometriosis ever is (it’s usually ignored even for cis women), in order to not have our insurance just outright deny treatment, we had to lie on those forms and claim to have been assigned female at birth. We were instructed to by the clerk we talked to about it. We didn’t want to purger ourselves, and frankly the only reason we had to was because the medical system doesn’t actually have a legal sex category for what our body is, and certainly didn’t when we were born.

Whether we “identify as” transgender or intersex, or both, these are the very real problems of our life.

We tried, very hard, to treat our dysphoria psychologically. We frequently used methods of reward to reinforce feelings of being OK with our body, including some of the most amazing sex we’ve had in our life. We walked away from these attempts feeling like we had succeeded and feeling like we could live the rest of our life with our body the way it was, only to find a little later that day the dysphoria would come back worse. All this did was give us DID, complicating our amnesia and dissociation and creating rifts between our system members that we’re still trying to heal.

Every time we go off our HRT, or experience a spike in our testosterone for some reason, we suffer dysphoria.

Every time our sex related CPTSD is triggered, we have flashbacks to our preop days, and the sensations of having a penis, which we do miss for the sex actually, give us the most sickening dysphoria. This dysphoria was very real, something we didn’t want to have, and that we resisted our whole life to our own detriment. No social conditioning could treat it.

But, the endometriosis has also been a huge problem. It effected our childhood development enough to complicate our life severely, bringing us trauma from sexual assault in the locker room, and bullying and harassment on the street. And a whole lot of confusion. But it’s also made medical transition hard. It threatens our access to HRT due to the fact that it would go reasonably dormant if we switched back to testosterone. We are fortunate that it is reasonably controlled by progesterone for now, and only bothers us about every three months as opposed to every month.

But even if we didn’t have access to progesterone and had to endure intense endometriosis triggered by the estradiol we take, we’d still take the estradiol, because our dysphoria is so intense and dangerous to us. It nearly killed us with over 40 suicidal episodes.

So, regardless of whether or not people accept endometriosis or severe physiological dysphoria as intersex conditions or signs of being trans, they are things that we have to live with and manage. And, because of the way the medical system is set up, we have to do things like alter our gender marker and correct people face to face, repeatedly, in order to survive.

As you may guess, at this point, this was all inspired by several conversations we’ve had. Countless, honestly. But the more frustrating ones are those that include people trying to define what “intersex” is. A very common phrase we’ve seen is, “I don’t think endometriosis is or can be categorized as an intersex condition.”

The thing is, even if you call it a “disorder of sex development” or simply “a disease”, the truth is that we have it, and it has effected our life since our first puberty in profoundly impactful ways. And some of those ways threaten our healthcare and require us to play fast and loose with our gender marker. And the act of assigning us “male” at birth didn’t make it go away.

Frankly, though, identity is also at play in all of this, because we have also had social dysphoria, and conflicting dysphoria at that, and we have three genders, and way more consciousnesses than that in our psyche, and it just matters.