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intersex-support · 2 months
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I wanted to pop on for a moment and say that when I see all of the asks and calls for support from intersex people that we can’t get to, it’s really sad. I think a lot of us suffer from fear, isolation, loneliness. There are resources out there, there’s community, there’s information that we can direct people towards, but from personal experience I don’t think a good majority of it is sustainable.
It’s difficult for us to connect and to maintain healthy relationships with other intersex people even once we find them, it’s difficult for us to navigate the different power dynamics, it’s difficult for us to even have a single conversation because it can be emotionally heavy, maybe we have our guards up, and we’re not above being reactive and defensive towards each other.
I think this is bound to happen in any group of people where a large percentage have experienced harm. I can’t think of a single intersex person I’ve met who hasn’t struggled with community and support. There isn’t a perfect solution that can be offered, I just hope we know that none of us feeling this way are alone.
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intersex-support · 2 months
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help me stay away from my abuser's house a few more weeks
long story short, im houseless. have been since the end of november. i have been fighting tooth and nail to avoid having to move back in with my abusive mother. i have nearly given up a few times but its become more and more apparent to me that i simply can not go there. i am hoping to go forward with my plan to stay at a dv shelter for a few months so i can hopefully get government housing assistance, but i need a few more weeks to a month at least at this airbnb to get my medical needs addressed before i do
please help me. i need at least $162 to pay for this airbnb through monday to begin with. i need $1528 for another month here, not including food. staying with my abuser comes with definitive risk of me being sexually assaulted, among other dangers.
ppal
vmo
cshapp
ko-fi (not an ideal place to send $ since ppal marks it as a business transaction but that is where the crowdfnding goal is)
please dont tag this with any tws for visibility's sake!
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intersex-support · 2 months
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Summary: Chapter 4 of Critical Intersex
For many of us, Chapter 4 of Critical Intersex (2009) turned out to be a particularly rich source of information about intersex history. So I (Elizabeth) have decided to give a fairly detailed summary of the chapter because I think it’s important to get that info out there. I’m gonna give a little bit of commentary as I go, and then a summary of our book club discussion of the chapter.
The chapter is titled “(Un)Queering identity: the biosocial production of intersex/DSD” by Alyson K. Spurgas. It is a history of ISNA, the Intersex Society of North America, and how it went from being a force for intersex liberation to selling out the movement in favour of medicalization. (See here for summary of the other chapters we read of the book!)
Our high level reactions:
Elizabeth (@ipso-faculty): Until I read chapter 4, I didn't really realise how reactionary “DSD” was. It hadn't been clear to me how much it was a response to the beginning of an organized intersex advocacy movement in the United States.
Michelle (@scifimagpie): I could feel the fury in the writer's tone. It was a real barn burner.
Also Michelle: the fuckin' respectability politics of DSD really got under my skin, as a term! I know the importance, as a queer person, of not forcing people to ID as queer, but this was a lot.
Introducing the chapter
The introduction sets the tone by talking about how in the Victorian era there was a historical shift from intersex being a religious/juridical issue to a pathology, and how this was intensified in the 1950s with John Money’s invention of the optimal gender rearing model. 
Spurgas briefly discusses how the OGR model is harmful to intersex people, and how it iatrogenically produces sexual dysfunction and gender dysphoria. “Iatrogenic” means caused by medicine; iatrogenesis is the production of disease or other side-effects as a result of medical intervention.
This sets scene for why in the early 1990s, Cheryl Chase and other intersex activists founded the Intersex Society of North America (ISNA). It had started as a support group, and morphed significantly over its lifetime. ISNA closed up shop in 2008.
Initially, ISNA was what we’d now call interliberationist. They were anti-pathologization. Their stance was that intersexuality is not itself pathological and the wellbeing of intersex people is endangered by medical intervention. They organized around the abolition of surgical intervention. They also created fora like Hermaphrodites With Attitude for the deconstruction of bodies/sexes/genders and development of an intersex identity that was inherently queer. 
The early ISNA activists explicitly aligned intersexuality in solidarity with LGB and transgender organizing. There was a belief that similar to LGBT organizing, once intersex people got enough visibility and consciousness-raising, people would “come out” in greater numbers (p100).
By the end of the 90s, however, many intersex people were actively rejecting being seen as queer and as political subjects/actors. The organization had become instead aligned with surgeons and clinicians, had replaced “intersex” with “DSD” in their language.
By the time ISNA disbanded in 2008 they had leaned in hard on a so-called “pragmatic” / “harm reduction” model / “children’s rights perspective”. The view was that since infants in Western countries are “born medical subjects as it is” (p100)
Where did DSD come from? 
In 2005, the term “disorders of sexual differentiation” had been recently coined in an article by Alice Dreger, Cheryl Chase, “and three other clinicians associated with the ISNA… [so as] to ‘label the condition rather than the person’” (p101). Dreger et al thought that intersex was “not medically accurate” (p101) and that the goal should be effective nomenclature to “sort patients into diagnostically meaningful groups” (p101).
Dreger et al argued that the term intersex “attracts the interest of a large number of people whose interest is based on a sexual fetish and people who suffer from delusions about their own medical histories” (Dreger et al quoted on p101)
Per Spurgas, Dreger et al had an explicit agenda of “distancing intersex activism from queer and transgressive sex/gender politics and instead in supporting Western medical productions of intersexuality” (p102). In other words: they were intermedicalists.
According to Dreger et al, an alignment with medicine is strategically important because intersex people often require medical attention, and hence need to be legible to clinicians. “For those in favor of the transition to DSD, intersex is first and foremost a disorder requiring medical treatment” (p102)
Later in 2005 there was a “Intersex Consensus Meeting” organized by a society of paediatricians and endocrinologists. Fifty “experts” were assembled from ten countries (p101)... with a grand total of two actually intersex people in attendance (Cheryl Chase and Barbara Thomas, from XY-Frauen). 
At the meeting, they agreed to adopt the term DSD along with a “‘patient-centred’ and ‘evidence-based’ treatment protocol” to replace the OGR treatment model (p101)
In 2006, a consortium of American clinicians and bioethicists was formed and created clinical guidelines for treating DSDs. They defined DSD quite narrowly: if your gonads or genitals don’t match your gender, or you have a sex chromosome anomaly. So no hormonal variations like hyperandrogenism allowed.
The pro-DSD movement: it was mostly doctors
Spurgas quotes the consortium: “note that the term ‘intersex’ is avoided here because of its imprecision” (p102) - our highlight. There’s a lot of doctors hating on intersex for being a category of political organizing that gets encoded as the category is “imprecise” 👀
Spurgas gets into how the doctors dressed up their re-pathologization of intersex as “patient centred” (p103) - remember this is being led by doctors, not patients, and any intersex inclusion was tokenistic. (Elizabeth: it was amazing how much bs this was.)
As Spurgas puts it, the pro-DSD movement “represents an abandonment of the desire for a pan-intersexual/queer identity and an embrace of the complete medicalization of intersex… the intersex individual is now to be understood fundamentally as a patient” (p103)
Around the same time some paediatricians almost came close to publicly advocating against infant genital mutilation by denouoncing some infant surgeries. Spurgas notes they recommended “that intersex individuals be subjected (or self-subject) to extensive psychological/psychiatric, hormonal, steroidal and other medical” interventions for the rest of their lives (p103).
This call to instead focus on non-surgical medical interventions then got amplified by other clinicians and intermedicalist intersex advocacy organizations.
The push for non-surgical pathologization hence wound up as a sort of “compromise” path - it satisfied the intermedicalists and anti-queer intersex activists, and had the allure of collaborating with doctors to end infant surgeries. (Note: It is 2024 and infant surgeries are still a thing 😡.)
The pro-DSD camp within the intersex community
Spurgas then goes on to get into the discursive politics of DSD. There’s some definite transphobia in the push for “people with DSDs are simply men and women who happen to have congenital birth conditions” (p104). (Summarizer’s note: this language is still employed by anti-trans activists.)
The pro-DSD camp claimed that it was “a logical step in the ‘evolution in thinking’” 💩 and that it would be a more “humane” treatment model (p105) 💩
Also that “parents and doctors are not going to want to give a child a label with a politicized meaning” (p104) which really gives the game away doesn’t it? Intersex people have started raising consciousness, demanding their rights, and asserting they are not broken, so now the poor doctors can’t use the label as a diagnosis. 🤮
Spurgas quotes Emi Koyama, an intermedicalist who emphasized how “most intersex people identify as ‘perfectly ordinary, heterosexual, non-trans men and women’” (p104) along with a whole bunch of other quotes that are obviously queerphobic. Note from Elizabeth: I’m not gonna repeat it all because it’s gross. In my kindest reading of this section, it reads like gender dysphoria for being mistaken as genderqueer, but instead of that being a source of solidarity with genderqueers it is used as a form of dual closure (when a minority group goes out of its way to oppress a more marginalized group in order to try and get acceptance with the majority group).
Koyama and Dreger were explicitly anti-trans, and viewed intergender type stuff as “a ‘trans co-optation’ of intersex identity” (p105) 🤮
Most intersex people resisted “DSD” from its creation
On page 106, Spurgas shifts to talking about how a lot intersex people were resistant to the DSD shift. Organization Intersex International (OII) and Bodies Like Ours (BLO) were highly critical of the shift! 💛 BLO in particular noted that 80-90% of their website users were against the DSD term. Note from Elizabeth: indeed, every survey I’ve seen on the subject has been overwhelmingly against DSD - a 2015 IHRA survey found only 3% of intersex Australians favoured the DSD term.
Proponents of “intersex” over “DSD” testified to it being depathologizing. They called out the medicalization as such: that it serves to reinforce that “intersex people don’t exist” (David Cameron, p107), that it is damaging to be “told they have a disorder” (Esther Leidolf, p107), that there is “a purposeful conflation of treatment for ‘health reasons’ and ‘cosmetic reasons’ (Curtis Hinkle, p107), and that it’s being pushed mainly by perisex people as a reactionary, assimilationist endeavour (ibid).
Interliberationism never went away - intersex people kept pushing for 🌈 queer solidarity 🌈 and depathologization - even though ISNA, the largest intersex advocacy organization, had abandoned this position.
Spurgas describes how a lot of criticism of DSD came from non-Anglophone intersex groups, that the term is even worse in a lot of languages - it connotes “disturbed” in German and has an ambiguity with pedophilia and fetishism in French (p111).
The DSD push was basically entirely USA-based, with little international consultation (p111). Spurgas briefly addresses the imperialism inherent in the “DSD” term on pages 118/119.
Other noteworthy positions in the DSD debate
Spurgas gives a well-deserved shout out to the doctors who opposed the push to DSD, who mostly came from psychiatry and opposed it on the grounds that the pathologization would be psychologically damaging and that intersex patients “have taken comfort (and in many cases, pride) in their (pan-)intersex identity” (p108) 🌈 - Elizabeth: yay, psychiatrists doing their job! 
Interestingly, both sides of the DSD issue apparently have invoked disability studies/rights for their side: Koyama claimed DSD would herald the beginning of a disability rights based era of intersex activism (p109) while anti-DSDers noted the importance in disability rights in moving away from pathologization (p109).
Those who didn’t like DSD but who saw a strategic purpose for it argued it would “preser[ve] the psychic comfort of parents”, that there is basically a necessity to coddle the parents of intersex children in order to protect the children from their parents. (p110) 
Some proposed less pathologizing alternatives like “variations of sex development” and “divergence of sex development” (p110)
The DSD treatment model and the intersex treadmill
Remember all intersex groups were united that sex assignment surgery on infants needs to be abolished. The DSD framework that was sold as a shift away from surgical intervention, but it never actually eradicated it as an option (p112).  Indeed, it keeps ambiguous the difference between medically necessary surgical intervention and culturally desired cosmetic surgery (p112). (Note from Elizabeth: funny how *this* ambiguity is acceptable to doctors.)
What DSD really changed was a shift from “fixing” the child with surgery to instead providing “lifelong ‘management’ to continue passing” (p112), resulting in more medical intervention, such as through hormonal and behavioural therapies to “[keep] it in remission” (p113).
Cheryl Chase coined the “intersex treadmill’: the never-ending drive to fit within a normative sex category (p113), which Spurgas deploys to talk about the proliferation of “lifelong treatments” and how it creates the need for constant surveillance of intersex bodies (p114). Medical specialization adds to the proliferation, as one needs increasingly more specialists who have increasingly narrow specialties.
There’s a cruel irony in how the DSD model pushes for lifelong psychiatric and psychological care of intersex patients so as to attend to the PTSD that is caused by medical intervention. (p115) It pushes a capitalistic model where as much money can be milked as possible out of intersex patients (p116).
The DSD treatment model, if it encourages patients to find community at all, hence pushes condition-specific medical support groups rather than pan-intersex advocacy groups (p115)
Other stuff in the chapter
Spurgas does more Foucault-ing at the end of the chapter. Highlight: “The intersex/DSD body is a site of biosocial contestation over which ways of knowing not only truth of sex, but the truth of the self, are fought. Both intelligibility and tangible resources are the prizes accorded to the winner(s) of the battle over truth of sex” (p117)
There’s some stuff on the patient-as-consumer that didn’t really land with anybody at the book club meeting - we’re mostly Canadians and the idea of patient-as-consumer isn’t relatable. Ei noted it isn’t even that relatable from their position as an American.
***
Having now summarized the chapter, here's a summary of our discussion at book club...
Opening reactions
Michelle (M): the way the main lady involved became medicalized really made my heart sink, reading that.
Elizabeth (E): I do remember some discussion of intersex people in the 90s, and it never really grew in the way that other queer identities did! This has kind of helped for me to understand what the fuck happened here.
E: It was definitely a very insightful reading on that part, while being absolutely outraging. I didn't know, but I guess I wasn't surprised at how pivotal US-centrism was. The author was talking about "North American centric" though but always meant the United States!!! Canada was just not part of this! They even make mention of Quebec as separate and one of the opposing regions. I was like, What are you doing here, America? You are not the entirety of our continent!!!
E: The feedback from non-Anglophone intersex advocates that DSD does not translate was something that I was like, "Yes!" For me, when I read the French term - that sounded like something that would include vaginismus, erectile dysfunction - it sounds far more general and negative.
M: the fuckin' respectability politics of DSD really got under my skin, as a term! I know the importance, as a queer person, of not forcing people to ID as queer, but this was a lot.
E: it was very assimilationist in a way that was very upsetting. I knew intellectually that this was going on. There was such a distinct advocacy push for that. The coddling of parents and doctors at the expense of intersex people was such a theme of this chapter, in a way that was very upsetting. They started out with this goal of intersex liberation, and instead, wound up coddling parents and doctors.
Solidarities
M: I feel like there's a real ableist parallel to the autism movement here… It dovetails with how the autism movement was like, "Aww, we're sorry about your emotionless monster baby! This must be so hard for you [parents]!" And it felt like "aw, it's okay, we'll fix your baby so they can interface with heterosexuality!" [Note: both of us are neurodivergent]
E: A lot of intersexism is a fear that you're going to have a queer child, both in terms of orientation and gender.
E: You cannot have intersex liberation without putting an end to homophobia and transphobia.
M: We're such natural allies there!
E: I understand that there are these very dysphoric ipsogender or cisgender people, who don't want to be mistaken as trans, but like it or not, their rights are linked to trans people! When I encounter these people, I don't know how to convey, "whether you like it or not, you're not going to get more rights by doing everything you can to be as distant as possible."
M: it reminds me of the movements by some younger queers to adhere to respectability politics.
E: Oh no. There are younger queers who want respectability politics????
M: well, some younger queers are very reactionary about neopronouns and kink at pride. they don't always know the difference between representation and "imposing" kinks on others. In a way, it reminds me of the more intentional rejection of queer weirdos, or queerdos, if you will, by republican gays.
E: I feel like a lot of anti-queerdom that comes out of the ipso and cisgender intersex community reads as very dysphoric to me. That needs to be acknowledged as gender dysphoria.
M: That resonates to me. When I heard about my own androgen imbalance, I was like, "does that mean I'm not a real woman?" And now I would happily say "fuck that question," but we do need an empathy and sensitivity for that experience. Thought not tolerance for people who invalidate others, to be honest.
E: The term "iatrogensis" was new to me. The term refers to a disease caused or aggravated by medical intervention.
M: So like a surgical complication, or gender dysphoria caused by improper medical counselling!
The DSD debate
ei: i think the "disorder" discussion is really interesting. in my opinion, if someone feels their intersex condition is a disorder they have every right to label it that way, but if someone does not feel the same they have every right to reject the disorder label. personally i use the label "condition". i don't agree with forcing labels on anyone or stripping them away from anyone either.
M: for me, it felt like a cautionary tale about which labels to accept.
ei: i'm all around very tired of people label policing others and making blanket statements such as "all people who are this have to use this label”... i also use variation sometimes, i tend to go back and forth between variation and condition. I think it's a delicate balance between being sensitive to people's label preferences vs making space for other definitions/communities.
We then spoke about language for a bunch of communities (Black people, non-binary people) for a while
E: one thing that was very harrowing for me about this chapter is that while there was this push to end coercive infant surgery, they basically ceded all of the ground on "interventions" happening from puberty onward. And as someone who has had to fight off coercive medical interventions in puberty, I have a lot of trauma about violent enforcement of femininity and the medical establishment.
ei: i completely agree that it's psychologically harmful tbh…. i was assigned male at birth and my doctors want me to start testosterone to make me more like a perisex male. which is extremely counterproductive because i'm literally transfem and have expressed this many times
Doctors Doing Harm
M: for me, the validation of how doctors can be harmful in this chapter meant a lot.
E: something that surprised me and made me happy was that there were some psychiatrists who spoke out against the DSD label. As someone who routinely hears a lot of anti-psychiatry stuff - because there's a lot of good reason to be skeptical of psychiatry, as a discipline - it was just nice to see some psychiatrists on the right side of things, doing right by their patients. Psychiatrists were making the argument that DSD would be psychologically harmful to a lot of intersex people.
ei: like. being told that something so inherently you, so inherently linked to your identity and sense of self, is a disorder of sexual development, something to be fixed and corrected. that has to be so harmful
ei: like i won't lie i do have a lot of severe trauma surrounding the way i've been treated due to being intersex. but so much of my negative experiences are repetitive smaller things. Like the way people treat me like my only purpose is to teach them about intersex people …. either that or they get really creepy and gross. I’m lucky in that i'm not visibly intersex, so i do have the privilege of choosing who knows. but there's a reason why i usually don't tell people irl.
M: intersex and autism have overlap again about how like, minor presentation can be? As opposed to the sort of monstrous presentation [Carnival barker impression] "Come see the sensational half-man, half-woman! Behold the h-------dite!" And like - the way nonverbal people are also treated feels relevant to that, because that's how autism is often treated, like a freakshow and a pity party for the parents? And it's so dehumanizing. And as someone who might potentially have a nonverbal child, because my wife is expecting and my husband and she both have ADHD - I'm just very fed up with ableism and the perception of monstrosity.
Overall, this was a chapter that had a lot to talk about! See here for our discussion of Chapters 5-7 from the same volume.
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intersex-support · 2 months
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January Pick: Envisioning African Intersex
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Continuing our trend of alternating between fiction and non-fiction, our pick for January is Envisioning African Intersex: Challenging Colonial and Racist Legacies in South African Medicine, by Amanda Lock Swarr.
This is an academic text, so we won't be reading the whole thing! To make it manageable, we will be reading the first three chapters:
The Introduction: Pathologizing Gender Binaries
Chapter 1: Colonial Observations and Fallacies
Chapter 2: Intersex in Four South African Racial Groups in Durban
To ensure everybody has access to the book, a pdf copy is available through the discord.
Content notice: this book will be talking about the history of intersexism, colonialism, and racism.
When we're meeting We will be meeting to discuss the four chapters on Fri Jan 26, at: - 12:30-14:00 Pacific (Vancouver, San Francisco, etc) - 15:30-17:00 Eastern (Toronto, New York, etc) - 21:30-23:00 Central European (Berlin, Paris, etc) for more time zones see here
To join the discord: https://discord.gg/U8ZucKwGPK Also see: our code of conduct
How much of the book do you need to read? You don’t need to finish it participate! You are welcome to skim and/or skip chapters as desired. Current & future book picks If this isn’t in the cards for you, we’re reading YA portal fantasy Across the Green Grass Fields this month (December), and in February we will be reading the sci-fi short story collection Power To Yield.
We'll be reading another non-fiction selection in March, but it is not yet decided, so let us know in the Discord what would interest you!
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intersex-support · 2 months
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Hello everyone i know you already did a lot to me and to my family I'm shy asking your help and your support but this family really need your support ( i know them in person) Mohamed is a hemophilia patient who needs access to medicine and to do surgery on his knees, his 11-year-old daughter also needs thigh surgery (she was supposed to do it outside Gaza in November but couldn't travel due to the border issues). I appreciate you guys and love you. Share it as u can.
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intersex-support · 3 months
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Working literally by myself the week of Christmas while my boss is on a cruise and she specifically set things up & did training so if I’m the only employee available to work the business can stay open while she is on cruises
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But no holidays are paid for me anyways and my hours are more than halved for the week so if anyone wants to help a disabled paycheck to paycheck black ndn two-spirit stay afloat this holiday szn there is one right here
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Setting a goal for the wages I’ll be missing but it’s ok if I don’t hit it, anything helps at all. 66/220
Heartemojie on cashapp + venmo, paypal is 13thead
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intersex-support · 3 months
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I’m in the process of organizing a gofundme for a family to get out of Gaza and into Egypt. If anyone with a big following on Twitter can help me spread it there, please let me know.
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intersex-support · 3 months
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Making this new pinned post for Ahmed @90-ghost Please donate and/or spread as much as you can.
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intersex-support · 4 months
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Not even 4 days til thanksgiving and I’m in my room crying bc my grandpa thinks him & the other nonblack natives toootally did nothing to deserve the backlash from the black ndns in our tribe when they decided to literally segregate and outcast them.
So it is That time of year, nonblack natives & white ppl who’re observing the holiday feel free to check out the article I wrote on antiblack oppression in ndn country and the one I wrote about afroindigeneity, and feel free to tip me as well. heartemojie on cashapp & Venmo, 13thead on PayPal.
Black ndns add your info
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intersex-support · 5 months
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Hey everyone! I wanted to give a little update about the state of the inbox and the status of the blog. Currently, we have 140 unanswered asks in the inbox. Right now, there's only one active mod, and I just do not have the time or ability to answer all questions as they come in. I know that can be frustrating, and I wish we had the capacity to answer everyone's questions.
When I do have time to answer questions, I'm trying to prioritize questions that are on topics that haven't been asked before, time sensitive questions, or questions that only take like a five minute answer. We have a lot of questions that are sent in that are pretty similar to questions that we've answered before, so I'm trying to think of ways to improve our tagging system and refurbish our FAQ so that there are more easily accessible resources.
I'm also thinking about making some summary posts like a step-by-step guide for researching intersex variations, some summary posts explaining differences between intersex variations with overlapping symptoms, etc. I thought that might be a helpful way so that we could reply to more asks and link to existing resources. So I wanted to ask followers what topics people feel are the most urgent, interesting, or helpful to have summary posts about. Feel free to reply to this post with any ideas or priorities you have.
Anyway, thank you all for all the patience and love you've shown this blog over the years! We really appreciate the community that's been created here and have so much love for all of you 💜💜💜
-Mod E
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intersex-support · 5 months
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what intersex condition can cause a lack of typical pubertal development, no adam's apple, no voice dropping, patchy & loose facial hair that never grows past a certain length, longer legs than torso (particularly the thighs) & tall but narrow frame in an amab person?
Hey anon!
There are several variations that could be associated with what you've listed. A lot of them have other symptoms associated with the diagnosis that you didn't share, but I wanted to list a few so that you could see if there was any overlap with other symptoms.
In my opinion, the most likely variation that has the most overlap of those symptoms is Klinefelter's syndrome. Klinefelter's Syndrome is caused by having XXY chromosomes. People with Klinefelter's are often taller and less muscular, have less facial and body hair, and have a later or nonexistent puberty. The fact that you also mentioned your tall and narrow frame makes Klinefelters jump out to me. Klinefelters can also cause a smaller than typical penis, breast development in puberty, low energy, and weaker bones. Klinefelter's can be diagnosed through chromosome testing.
It's less likely, but another variation that has a some of those symptoms is Kallmann Syndrome, which is caused by low levels of sex hormones like estrogen or testosterone. For people with XY chromosomes, it can cause smaller than typical penis, and can cause a puberty to be delayed or not happen at all. Things like voice dropping or growing facial hair might not happen without hormone therapy. People with Kallmann Syndrome usually have their sense of smell impacted, so if you don't have a sense of smell, that might be another relevant factor.
Also probably less likely, but one possible option might be De la Chapelle Syndrome. People with De La Chapelle Syndrome are born with a penis and testicles, and also XX chromosomes. This variation can cause differences in puberty, undescended testes, and breast growth in puberty. So if you had any estrogen based factors of your puberty, this might be worth looking into.
As always, we are not doctors and cannot diagnose you. We are always happy to share information about intersex variations as a starting point for research, but since there are so many overlapping variations, and also other medical conditions that we don't have any knowledge about, we want to be clear that this is only a starting point.
Please feel free to reach out with any other questions, and best of luck, anon!
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intersex-support · 5 months
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Hi! Questioning intersex here, kinda leaning on the side of “not intersex but still relates enough to the community to be curious and either way would want more resources on supporting intersex people.” I have PCOS, and my testosterone is higher than average. However it’s not so high that I appear particularly “not feminine” (eg having a beard (I have wispy things on my neck but not like an actual beard), different distribution of body weight, other stuff that testosterone does). I also feel like I was kinda forcibly feminized in a way? If that makes sense/is the right terminology? I had precocious puberty and people (2nd and 3rd graders, they weren’t trying to be hurtful but still) would always comment on my breasts and weight and acne, and I kept hearing people calling me “girl girl girl” and only focusing on the ways puberty made me more feminine, while never noticing the effects testosterone on me (I’ve had more leg hair than my (very hairy) dad since age 8 lol). Plus ever since I came out as trans, the people I didn’t hide my puberty from still misgendered me all the time so????
This is very long sorry so I guess what I’m trying to ask is I do have a thing that I’ve been seeing intersex people saying counts as intersex, but I don’t present in a way that other people respond to as anything but perisex, and if there’s any resources on stuff like this that you have I would appreciate
(also seriously sorry this is a very very long run-on sentence lol)
Hey anon,
Thanks for reaching out.
From my perspective, you are absolutely welcome to identify as intersex, and that the intersex community is your community. Major intersex organizations like InterACT, InterConnect, and tons of organizations globally all welcome people with PCOS as intersex. At the US national intersex conference this summer, I went there and met a ton of people with PCOS at the conference, and no one debated whether or not they were "intersex enough"--they were just valuable members of our community who have their own perspectives and intersex experience.
One beautiful thing about the intersex community is that intersex is an umbrella term for so many variations and experiences. There is no one intersex experience, and even within diagnoses, there is so much diversity in terms of what our lives look like. Some of us grow up our whole life knowing that we're intersex, while others find out in puberty or adulthood. Some of us are "visibly" intersex and experience what it's like to have visible sex traits outside the binary, while others of us have less visible traits. Some of us have a lot of interactions with the medical system, while some of us have very little medical intervention. All of these are real and important ways of being intersex, and one of them isn't "more intersex" than another.
The things you've described in your ask really resonate with me as things that I've heard a lot of other intersex people talk about. Your experience with high testosterone, the way other people react to puberty, sex characteristics, and your body are things that a lot of other intersex people can relate to. It makes a lot of sense to me that you would feel like there were ways that you were feminized coercively and forcibly, and I think that is a really key example of ways that societal intersexism can still affect us even if we aren't read as intersex by everyone in our lives. Even if people perceive and respond to you as perisex, your experiences are still shaped by your own internal knowledge, identity, body, and history.
Of course, you are under no pressure to label yourself any way that feels uncomfortable to you, or start participating in ways that feel overwhelming. You are the authority over your own life, and can use what terminology feels the most helpful and resonant for you. But know that the intersex community is here for you in whatever way that looks like for you. Some resources that might be helpful: Is PCOS intersex Video by Hans Lindhal, another article by Hans Lindhal, and this article by Gillian Giles.
Sending love and solidarity, anon <3
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intersex-support · 5 months
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i might have found out my anatomy is different from illustrations I've seen in sex ed books and i don't know if im just overthinking it. my partner and i couldn't find my hole. they're more experienced than i am and didn't make a huge deal out of it for my sake, but now my mind is bringing back questions ive had about my body for years that i could not get answers for due to medical trauma and neglect. idk i think i just wanted to get this off my chest because it's a lot to process. thanks for this blog being here.
💜💜💜Finding out new information about your body can be really overwhelming and hard to process, especially when we've lived through medical trauma and neglect. Those types of memories can be so painful and intimate. It's so understandable that you would be having a lot of questions and memories and wondering what this means for your body and your identity. I know when I first found out I might be intersex, I started having a lot of messy feelings about past events and what they had maybe meant, and what all of this meant for my future. I felt really conflicted and scared, even though I was also interested in finding out more information.
It makes a lot of sense that you'd be wondering about being intersex right now--there are several intersex variations that can cause a lack of an opening, and if you want information about any of these, please feel free to send another ask. You are not alone, and you deserve support as you navigate all this new information and questions about being intersex. Whatever emotions you're feeling right now are so welcome in this space and there is no rush to find answers or come to any sort of conclusions. Our inbox is always welcome for questions, venting, or literally anything, whenever you need it.
Sending so much love and solidarity, anon <3
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intersex-support · 5 months
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This is a bit of an odd, TMI question, and you don't need to answer if you don't want to. I was assigned female at birth but I seem to be missing ... some things. I've tried my own research and cant find anything conclusive. Is it possible this is an intersex condition?
Hey anon,
I'm not quite sure which exact body parts you are referring to, but I want to share some information that might be helpful.
One intersex variation is called MRKH, where people are usually born with a vulva and external genitalia, but do not have a vagina or have a much shorter than typical vagina. People with MRKH often do not have a uterus, or have a partial uterus. People with MRKH have XX chromosomes, go through an estrogen based puberty, and usually don't have periods.
Another intersex variation is called aphallia. This usually refers to people with XY chromosomes that are born without a penis, but can also refer to people born without a clitoris and who have other genital differences.
Vaginal atresia is another intersex variation where people are born without a vaginal opening, but generally have a uterus, cervix, etc.
If you have any other info you want to share, feel free to reach back out and we can try to give you some more specific info.
Best of luck, anon.
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intersex-support · 5 months
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I checked the FAQ/resources but didn't *see* specific info on this, hope it's not asked too often!:
What are the ways that medical intersex diagnoses and/or tests are performed? Are there urine tests? Blood tests? Does it change for people who were assigned female vs. male at birth? And is it exclusively determined by physical internal "abnormalities" (ie. internal testes/ovaries?) or can intersexuality be purely hormonal? I've been experiencing hormonal irregularities for my entire life and am curious about educating myself/looking into this--I was born in the rural deep South and don't believe I'd be informed if I was born with physical secondary sex characteristics. Thank you for all your hard work :-)
Hi Anon!
So basically, short answer is that almost everything you listed can be a possible test for intersex variations. There are many different intersex variations, all of which have different symptoms of diagnostic tests. Intersex variations affect the body in a variety of ways, including hormones, external genitalia, internal organs, secondary sex characteristics, and chromosomes. There are some intersex variations that primarily affect hormones, while there are other intersex variations that affect many different sex traits.
To get diagnosed with an intersex variation, it will depend on what symptoms you're having. If you're mostly having hormonal irregularities, most likely the first type of tests would be a blood test to get a full hormone panel for things like sex hormones, thyroid levels, and other endocrinology tests. Depending on what the tests find, sometimes most specific blood tests need to be done. A lot of intersex variations are also diagnosed through getting an in depth medical history, physical examination, and sometimes ultrasounds, genetic testing, or biopsies.
So basically, not all intersex people have internal testes or ovotestes, although there are many intersex people who do! I'd recommend reading through the intersex variations glossary and getting an idea of some of the ways intersex variations can present.
Please feel free to reach back with any other questions, and best of luck.
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intersex-support · 5 months
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birthday tomorrow!!! i am going to sleep and due to my severe hypersomnia might be asleep through my birthday so! here are some ways you can make year 27 brighter for me
am-zon wishlist (has items i need for my upcoming move)
am-zon gift registry (has the mobility aids i need to survive on it + a few gift cards for food and to replace my phone 🫶🏽)
ppal
vmo
$app
($ needs are in my posts!)
this year has been one of the most difficult of my entire life, mostly due to housing instability and disability progression. at the end of the month, i will have to move in with my abuser. it is a dangerous situation, but i have no other options right now.
long post with more info here
love you all 🥰
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intersex-support · 5 months
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I know I say this all the time, but I love you intersex people <3
I love intersex people who are traumatised and messy about it. I love intersex people who are still figuring out how to love their bodies. I love intersex people who are still unsure of how being intersex slots in with the rest of their identity. I love disabled intersex people who want to go remake the entire medical system. I love intersex people who are trying their best to fight for their intersex siblings
from one messy intersex person to another. wherever you might be around the world. I love you and I’m here for you
#<3
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