Intimate Intersex Adventures - Part 2
Join me as I catch up with Lor, 6 months further into her exploring identity and intersex experience.
Let me start with a massive “thank you!” to Lor for letting me ask all these personal and intrusive questions, for sharing so honestly and openly, and for letting me publicly publish this on my website.
The previous article about Lor is available here. Lor has also recently talked on the Fifty Shades of Gender podcast about her experiences.
Gender, labels, and pronouns
“I’m 99% happy with ‘non-binary’, which, for intersex people, is useless anyway, but we have to work with how cis people see us. So I’m in the non-binary box and within that box, I’m bi-gender, as I’m male and female at the same time, all the time.”
For Lor, feeling both male and female at the same time is a constant reality. The two can’t be separated and there’s no flux or fluidity to his gender. Lor clarified this by explaining that the way he thinks and feels is masculine and he has a masculine body. At the same time, he prefers being around women and feels more at home with women. To me, this suggests an element of socialised womanhood.
Lor expanded on this, as he sees femininity and masculinity as a continuum with toxic masculinity and toxic femininity at each far end. Towards the middle are healthy versions of each and this is where Lor aims to reside. It took Lor many days of reflection to really work out what felt right to him in terms of his gender identity and to accept that he occupies aspects of both binary genders.
However, there are aspects of Lor’s relationship to his gender that he’s still working out! This includes his internal biases around what it means to be feminine, such as seeing women as weak and not wanting to identify with that weakness.
As you can see in this article, Lor uses both “he” and “she”. The singular “they” doesn’t feel right as Lor is clear that he’s bigender and sees himself as both genders all the time. That said, he does want to be clear that even though he uses “she”, he still doesn’t feel like a woman.
Sexual identity
“I had absolutely no desire to get my chops round a penis!”
In terms of sexual attraction, Lor used to call herself a lesbian, but she’s now less sure about the term because she no longer identifies as a woman. Looking at the options available within the LGBT+ community, Lor is clear she isn’t a gay man and isn’t bisexual as she’s only attracted to women – especially girly girls (single ladies take note!). So she’s still looking for the right sexuality label. In the past, Lor was very specific in terms of only wanting to have relationships with people who have vulvas, whether they’re cis, trans, or non-binary.
However, she’s now more leaning towards the feeling that she’s more interested in dating someone who is right for her, rather than seeking out specific genitalia.
Hermaphrodites
“I have no emotional connection to my breasts; I’m agnostic about them.”
While the word intersex literally means between sexes, Lor told me that some intersex people are reclaiming the word “hermaphrodite” as a better description of who they are and the bodies they live in. In a similar way to the word “queer”, many people who can self-apply the term are doing so consciously and with pride.
Lor’s body continues to change now he’s no longer taking hormone medication. He also mentioned having some dysphoria particularly in relation to his chest and doesn’t like looking at or talking about that part of his body.
Intersex evolution
“It’s not about being a purist, it’s about asking the right questions to get a meaningful answer.”
Lor told me about the current debate within the intersex community concerning who should be included. Unlike most of the LGBT+ community which is based on self-identification, being intersex has a biomedical definition and is based on differences in sexual development.
Biology break
It’s science o’clock, peeps! Most people are endosex. This means that most people born with XX chromosomes are female and most people born with XY chromosomes are male. But that’s not true of everyone. In contrast, intersex people may differ by having reproductive organs or genitals from the opposite sex, or other related genetic variations. There are many ways to be intersex that include variations in hormone production and in chromosomes patterns, so there is great diversity within the intersex community. Around 1 in 2000 babies are born with atypical genitals and are intersex, but many more intersex variants are not identified until the person is older, if at all.
A bit more biology
Given that many people may be intersex and not find out until they have genetic karyotype testing done, for example for a bone marrow transplant, the total number of intersex people is an estimate at best. The statistic widely given is 1.7% of the general population, comparable to the population of redheads. As you can see, being intersex is all about biology. Consequently, intersex is not something you can feel or want to be.
Lor told me that some intersex advocates want to expand the definition of intersex to include people with incomplete sexual organs or hormone-related variations. This includes variations of hypospadias, AIS, MRKH, PCOS, endometriosis, retroverted uterus, and micropenis. The argument for this broader definition is that this makes up to 20% of the general population intersex. This would mean more social mass for advocacy, lobbying, and public support. In theory, that sounds like a great idea, don’t you think?
Lor explained to me why it’s not that clearcut and why he is unsure if this is the best way forward. He wonders if the benefits gained by swelling the numbers may be outweighed by muddying the cause. To explain, by adding in non-genetic differences such as different secondary sex characteristics as a reason for being intersex, it makes it harder to create a community of intersex people who have a shared sense of identity and understanding of what it is to be intersex. The danger being that within this 20%, the biomedical intersex voices could be drowned out and no longer have a safe and coherent space from which to build a community and advocate.
Clearly, there’s no simple or single answer here. Another idea Lor voiced was to have three possible subdivisions of intersex. This would allow the umbrella term intersex to unite everyone within the group. Under the umbrella of intersex would be three groups: those who are intersex/sex reversal, those with incomplete sex development, and those with differences of secondary sex characteristics.
Sex vs Gender
Sex and gender getting a bit confusing? Let me clarify things. Someone’s sex is separate from their gender. The two don’t need to overlap, although they do for many people. So intersex people can be male, female, or non-binary.
Some intersex people are trans. For others, like Lor, trans feels like a meaningless term for someone born containing both genders, as they can’t transition anywhere within the gender binary. In summary, someone’s trans-ness is separate from their intersex-ness.
Intersex investigations
Lor shared some of her history in the previous article and feels ready to share more now. At 19, when Lor didn’t start puberty, she wasn’t really part of the conversation between the doctors and her parents. It was something that she experienced as happening to her rather than with her.
Despite the absence of puberty, she only found out she was intersex when she was having many problems with her hormone replacement medication and was in a lot of pain in her reproductive system in general. After various medical examinations, Lor was told that no ovaries had shown up on the scans and that she had an under-formed womb.
There was then a very long period of time when nothing happened, as the healthcare professionals involved didn’t want to deprive Lor of the opportunity to get pregnant despite her repeatedly saying she didn’t want to. Even though Lor was by now in her 40s and had been certain her whole life she didn’t want children.
The combination of hormonal blockers and hormones medication together was really hard on her body and mental health. Lor also had endometriosis and investigations showed she was bleeding outside of her womb. Despite this, she was still denied a hysterectomy. Only when Lor complained about how much she was mentally and physically suffering through all of this, did a clinician finally give permission for her to have a hysterectomy.
Horrendous hysterectomy
“Honestly, the whole misogyny around medical care - it just really pisses me off!”
The hysterectomy procedure was supposed to last 45 minutes. Lor was in surgery for around 8 hours. The surgeons prolonged the operation due to what they found and what was done to Lor without his consent. Lor had agreed to a hysterectomy only. During the procedure, what should have been ovaries were found to be under-developed ovotestes on one side and an underdeveloped gonad on the other side. Due to their fibrous nature, they were automatically deemed a cancer risk and so were removed during Lor’s hysterectomy.
Lor added that there have been no detailed studies to prove this theory which may be worth noting as this belief forms the basis for all similar non-consensual surgeries. The remaining hours of surgery were taken up removing Lor’s cervix, lengthening his vaginal canal, and then dilating it. As if that wasn’t excruciating enough, also without his consent and for absolutely no medical reason, during this surgery, his urethra was rerouted. In total, Lor had over 300 internal stitches.
The argument for this unauthorised surgery, as it was later explained to Lor, was so he could have sex with a man. This is regardless of the fact that Lor was a life-long lesbian and didn’t want to have sex with people with penises, but nobody had checked with him.
For the following 6 months, Lor had an endless series of kidney infections that were horrendously painful. Thankfully, the rest of Lor’s genitals were left alone and he doesn’t have any residual pain.
In case I’ve not made it quite clear enough through my mist of rage, most of the above were not done with informed consent as Lor was under anaesthetic when they made the decision to perform the majority of this surgery. This is an example of why so many intersex people are so adamant and vocal about not performing unnecessary surgery on intersex infants, children, or adults.
Hospital freakshow
After the exhausting 8 hours of surgery, Lor also found out that a number of medical professionals had come into the operating theatre and not only looked at – but also taken photos of – her genitals. She came round to hear hospital staff talking about, “the hermaphrodite” like she was in a freak show.
As a neurodiverse person, just being in a ward with five other people was already overwhelming. On top of that, there was a near-constant stream of people asking questions and wanting to look at Lor’s genitals.
Lor gave me the example that one time she woke up to find her covers had been pulled up to her waist and there were two medical professionals staring at her genitals. If that wasn’t bad enough, as the sleep cleared from her mind, she read that one of the two people had a “Podiatrist” badge on. So to add insult to injury, this person was a foot doctor and had absolutely nothing to do with Lor’s surgery at all!
Lor doesn’t describe herself as particularly emotional, but after this hoard of people examining her without her consent, she said she sobbed and sobbed in her hospital bed, not knowing how to make the horror stop.
Chimeras
A few days later while still in hospital, Lor was informed of his karyotype (46 XY) and was told he was genetically male in a female-presenting body. Lor was told he had female reproductive organs but a male skeleton, so wouldn’t have been able to birth a child vaginally even if he had ever wanted to. Lor also shared that he has male nipples with female mammary gland chest tissue, so his body really does contain aspects of both sexes.
As if Lor wasn’t special enough already, this means he is probably a natural intersex chimera!
Right, one last sciency bit. Most often, chimeras occur when fraternal twin embryos start together and one is consumed by the other. Nom nom nom! This results in one person containing more than one set of genetic material. For example, they might have one set of DNA in their blood and another in their muscle tissue.
Given twins are common in Lor’s family and his mother had confirmed that she started her pregnancy with twins and gave birth to only one child, it’s likely that Lor is also a chimera. Lor has yet to do further genetic testing, but if he does, there is a high chance he could be 46 XY and 46 XX.
One aspect of natural chimerism is having areas of different skin pigmentation, which Lor has on various parts of his body. He also had to have eleven extra teeth removed as a child and has plenty more extra teeth buried in his gums, which may well have belonged to the consumed twin.
Intersex advocacy
“The biggest step I’ve taken since we did the last blog is that I didn’t know what my voice was and I didn’t have any opinions. Now, I have strong opinions, such as that intersex people don’t belong in the LGBT+ community.”
Lor told me that Stonewall (UK) has removed intersex people from their core mission, as their focus is on identity-based aspects rather than biology-based. Also, a lot of intersex people are cishet (cisgender and heterosexual), so they don’t feel they belong in the LGBT+ community.
Having grown up in the LGBT+ community, Lor feels welcome there and will always have a safe space within that community. But, like Stonewall, she doesn’t see the need for intersex people to be an integral part of the LGBT+ community. Lor feels that by including intersex people, it can prevent progress for trans people, as they can experience many similar problems from body dysmorphia to difficult experiences interacting with medical professionals. She went on to explain that, possibly, keeping intersex people separate allows for greater clarity for all groups and therefore better advocacy.
Lor’s personal journey is being reflected in her own businesses too. She’s no longer happy to keep her mouth shut about intersex issues in particular and about diversity, inclusion, and accessibility in general. She’s exploring a range of ways to actively change and challenge her business methods, forms, and practices, as well as exploring how to better educate her business community.
Within the intersex community, Lor is still finding her voice. Advocacy is exhausting and can easily lead to burnout as well as receiving a lot of hate messages on social media. But Lor is confident that her personal changes are leading to significant changes in her business and wider life. She’s so much happier being her authentic non-binary, bigender, intersex self.
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