transgender

Hormone Treatment During Pregnancy and Gender Variance in Later Life

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For as long as I can remember, I’ve always had an unusual partially feminine gender identity, but until recently I never consciously acknowledged it. Then, a couple of years ago I realised that, although at a conscious level I identify as male, my body language, my pattern of arousal and orgasm, and my instinctive social behaviour are all very much more like what you’d typically see in a woman rather than a man. In addition, I appear to be suffering from secondary hypogonadism (i.e. my brain regions that control hormones aren’t working correctly), and I have a “eunuchoid” body structure, which indicates that my testosterone production has been below normal all my life.

Is Being Transgendered Just One of Those Things?

Although it never became my career, as a student I excelled at both chemistry and biology, and I’ve retained an amateur interest in the sciences ever since. Most people seem to assume that being transgendered is “just one of those things”, but I resolved to use that background in science to try and figure out whether there was an actual physical explanation for it. Accordingly, I tried to discover as much as I could about sexual development in the unborn child, and the kinds of things that can go wrong with that process.

Sexual Blueprints

Our sex-determining chromosome, the Y chromosome, is far smaller than any of our other chromosome and only has a few dozen functional genes on it. Basically all the Y chromosome does is to tell your undifferentiated gonads to turn into testicles (without it they’ll turn into ovaries instead). All of the genetic blueprints for actually building a male or female body are located elsewhere in your genome, so everyone has the full set of instructions for both sexes.

By default the “female” instructions are what get followed during fetal development, but if there’s testosterone present, the “male” instructions will be followed instead. Ordinarily this system works quite well, and you’ll develop as one sex throughout the pregnancy (which one depending on whether you have testicles churning out testosterone or not).

An Endocrine Disruptor

What appears to have happened in my case is that the pregnancy was no different from that of any other male baby, except that partway through the second trimester, something catastrophic happened that severely disrupted my endocrine system, so that for a few weeks I wasn’t producing any testosterone. Following that, my endocrine system recovered and everything went back to normal for the remainder of the pregnancy. The result is that I was built using the instructions for male development for most of the pregnancy, but during the time I wasn’t producing any testosterone, the instructions for female development were followed instead. That seems to have happened after all my physical development had completed, but very early in the process of wiring up my brain’s permanent structure (all the things that are affected seem to be associated with evolutionarily ancient parts of the brain, which points to the period of female development having happened early on in the process of wiring up my brain).

Based on when genital development takes place and when the process of building the permanent structure of the brain begins, I was able to work out that whatever it was must have happened somewhere around 16 or 17 weeks after conception, at or very soon after the time my mother would have first felt me moving inside her. Knowing what she was like when I was younger, my immediate thought was that she must have had a depressive episode, decided that she couldn’t cope with another child so soon after the first, and taken an overdose of something in an attempt to bring on a miscarriage.

A DIY Abortion That Didn’t Take

A bit of snooping on maternity forums soon revealed that the first thing most unhappily pregnant women contemplating a DIY abortion seem to think of is an overdose of contraceptive pills. I was able to subsequently confirm that my parents were using birth control pills for contraception at the time – the high dosage first generation ones. There was also something otherwise completely inexplicable that happened later in my childhood, which makes me think she must have been hiding a guilty secret along those lines.

My mother passed away in 2010, and in a way I’m glad that happened before I discovered any of this, because I would have been angry with her and she didn’t deserve that. She did her best to be a good mother to me and to all her other children, and I don’t hold her responsible in any way for what happened. I can’t blame my father either. He lost 3 brothers during his childhood and then his first wife died on their honeymoon, so I can understand why he became so obsessed with the idea of having a large family.

Brain Sexual Identity and DES

One further thing that made me think an exposure to artificial female hormones is the cause of my conditions was reading in the book “Brain Sex” about a pattern of behaviour commonly shown by teenage boys whose mothers were given treatment with a drug called diethylstilbestrol or DES in an attempt to prevent miscarriage . The boys in the study were typically very shy, socially withdrawn, had low self esteem, were regarded as sissies, bullied, ostracised by their peers, with no ability to fight back when attacked and no interest in sport. The authors of the book described it as “feminized behaviour”, and my teenage years matched it so closely it could have come straight out of my school report!

The main hormonal component of the contraceptive pills my parents were using is norethisterone acetate, a progestin, whereas DES is an estrogen. What estrogens and progestins both have in common is that they are female hormone derivatives, and are basically completely incompatible with masculinity. Both types of hormone have the ability to disrupt testicular hormone production at quite modest doses, well below those commonly used for medical treatment for women.

DES was for many years used to chemically castrate men suffering from hormone-sensitive prostate cancer, while progestins are commonly used for chemical castration of sex offenders and transsexuals. If they also suppress testosterone in a male fetus, then any use of them during a pregnancy of a male child carries a risk of creating a baby who developed as the wrong sex for part of the pregnancy. This is what I think happened to me, and to the DES sons.

For nearly two years I’ve been trying to find out as much as I can about DES sons, reading their personal accounts of how they’ve been affected and chatting with them online. Among the ones I’ve had contact with or whose life stories I’ve read, there seems to be a very high incidence of both intersex-related genital abnormalities and gender dysphoria. As a group they seem to commonly experience many of the same problems I have (a genital abnormality, feminized behaviour as a teenager, low testosterone and problems with hormones, gender variance). The key difference is that on the whole they seem to be far more psychologically female than I am (which is exactly what you’d expect, considering that their exposure was for a much larger part of the pregnancy than mine). I think it’s quite likely that for most of them, their testosterone production was completely suppressed and they were developing as female throughout the time their mothers were on the drug!

DES and all other estrogens were withdrawn from use in pregnancy 30 years ago, however, treatments for prevention of miscarriage, based on progestins rather than estrogens, continue to be used to the present day. One of these involves a progestin called hydroxyprogesterone caproate, given as a weekly intramuscular injection of either 250mg or 500mg, starting 16 weeks into the pregnancy – just around the time I think my hormone exposure occurred. The difference is that this treatment continues to be administered for the remainder of the pregnancy. If this drug does suppress testosterone production in a male fetus, then it’s hard to imagine a treatment better suited to creating as baby with a male body but a female brain! I’m fairly sure that if you gave an adult man 250mg per week of this drug, his testosterone production would be seriously impaired. Why wouldn’t the same happen to a male fetus?

Females Affected Too

In this article, I’ve only been looking at the effects of artificial sex hormones on a male fetus, however it’s likely that, under the right circumstances, a female fetus could be affected too. This could happen if the external hormone mimics the action of testosterone (e.g.progestin induced virilization), or if it disrupts endogenous hormone production in a way that causes excessive androgens to be produced (hyperandrogenism).

Postscript: This article was published previously September 2013. 

Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health

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Endometriosis is often a very misunderstood, and under diagnosed disease affecting a significant population of women. It is typically classified as a gynaecological condition affecting the organs of the female reproductive system, or pelvic region. There are, of course, manifestations of the disease that can appear in other areas of the body, and do not have to correlate with the pelvic region, though endometriosis is most commonly referred to as a female disease. There is a significant body of research exploring women with endometriosis, and their lived experiences, as well as how to treat women with endo, from a medical perspective. But what happens if the person with endometriosis is not a woman?

There are documented cases of cis men (cis meaning someone who identifies with the sex they were assigned at birth) who present with endometriosis of the prostate that is typically discovered when their body is introduced to estrogenic effects. I am sure there are also other ways and forms endo can manifest itself in the male sexed body, but the research at this point in time is simply not extensive enough for me to comment as fully as I would like to about the number of cis men affected by the disease.

Outside of the binary world of cis men and cis women affected by endometriosis, there is a population of trans men (and trans women) who face living with endometriosis everyday whose experience with the disease goes un-researched, and essentially erased from the endometriosis community as a whole. (Trans meaning someone whose gender identity does not match the sex they were assigned at birth).

I do not wish to take away from the experiences of women with this disease who do suffer a great deal in gaining access to proper medical treatment, and support systems, however, I believe it to be equally important to expose the reality of what it means to navigate a gendered disease when one does not belong to such a binary system.

I have been living with and navigating endometriosis for thirteen years. It took eleven years, and two surgeries before I received a diagnosis. If one were to look at my endo journey, this would not seem out of the ordinary, except that I am not a woman. I am a trans person navigating this highly gendered condition.

It is difficult to approach this topic in a community that has historically expressed a very female-centric ideology, leaving very little room to create a non-gendered and more inclusive approach to a disease that affects bodies alone. I cannot speak for all trans men, as each and every single person, regardless of gender identity, is going to have a unique experience with endometriosis. This does not mean that there cannot be overlap in symptoms, or experiences across any gender with the disease.

My overall experience, of gaining a diagnosis is not very dissimilar to that of most woman identified persons who go through endless test, and re-test, who are asked invasive questions, and forced options of pregnancy, hysterectomy, or intensely potent pharmaceuticals. Where my experience varies is in how each of these processes has affected my navigation and decision making with endometriosis. One of the largest difficulties I have encountered is, in gaining access to treatments based on my specific needs and wants for my own body. During my diagnostic phase, I hid from my practitioners my trans identity because I was afraid of not being able to gain access to appropriate care or treatment. As it was, I was already having difficulty navigating questions posed around sexual activity, as my experiences have not correlated with the simplistic set of questions around penetration from having a cis male partner.

In every single exam or ultrasound appointment I endured long conversations around my potentially being sexually abused, because I was so uncomfortable with receiving pelvic exams and transvaginal ultrasounds that I would fight back tears as the medical professionals forced their instruments upon my body. Every physical exam was an invasion that I knew needed to happen, but did not belong to my body.

In the past, I had been offered a hysterectomy, simply because doctors thought that would be an easier solution to relieving my pain. I have received questions from a lot of people I know as to why I don’t just go with this option if I am trans anyway. The simple truth is that I want to be able to maintain my fertility, just as anyone else who would like the possibility of children in the future. Being a trans person does not mean that I do not want kids, or that my desire for children is somehow less important.

Now that my practitioners are aware of my gender identity, and I am navigating new levels of difficulty in my disease, I am facing a new set of challenges and barriers to access. All of a sudden, a simple change in my identity on their chart has them questioning the legitimacy of my requests. What was previously an open invitation to receive a hysterectomy is now being scrutinized as something that I am potentially abusing the medical system for as part of my gender identity, and not my long struggle with endometriosis, and the physical, mental, and emotional anguish I have experienced as a result. My decisions around which pharmaceuticals I wish to use, if any, has been met with great debate, and I have had practitioners state to me directly that they do not wish to include on my referrals that I am trans, as they fear it will affect my treatment outcomes.

In a lot of ways I am extremely lucky to be able to work with the practitioners who are currently supporting me in my health, though it was a large struggle to find appropriate practitioners. While I hid my identity for a large portion of my struggle in receiving a diagnosis, not everyone is quite so lucky to fly below the radar in receiving initial treatment. There is a documentary about a trans man with ovarian cancer, called ‘Southern Comfort’ which documents well, the very real struggle of some men to accessing treatment in a specifically female identified space, such as a gynaecological office, or ultrasound clinic.

Gaining support has been an extremely important and significant portion of my ability to live with and navigate endo. Although I know that I am welcome at my local support group, I often feel very isolated in my experiences. A large body of the endometriosis community likes to refer to each other as ladies, girls, or endosisters, which to someone such as myself is highly exclusionary. I know that I am in the minority of people with endometriosis who do not identify with these terms, but this does not mean that I am not worth including, or that my experience with the disease is not important.

I think it can be problematic to attach a gender to any disease, as gender is so complexly related to social constructions and systems of oppression, power, and control. Diseases do not know the boundaries of social constructions. Just as endometriosis was once thought of as a white, career woman’s disease, we know very well that endometriosis does not discriminate among class, or racial structures, and I cannot see how gender is any different.

Many people who do not fit within the confines of a set definition can become easily isolated, marginalized, stigmatized, and discriminated against. In a community of people who all suffer a great deal from a very debilitating condition, it is disheartening to learn that one can be further marginalized within this group, as someone who is ‘othered’, oftentimes in very unintentional ways.

Inclusivity and barrier free access to support and information will benefit everyone who faces endometriosis in any facet of their life. Exclusionary actions create a weaker community, and can also lead to overlooking important aspects of disease-based research.

It is my hope, in moving forward with endometriosis awareness that all people affected by the disease have representation, and are not excluded by invisible lines.

Update

It has been just over four years since I wrote my very first piece about being trans and living with endometriosis. Since then there has been an increase in public awareness about trans people. Conversations about trans inclusion have been taking place across North America, and within Canada there are now federal protections for gender identity and gender expression. So what’s changed, and how is my care now since these changes have taken place?

Navigating Endometriosis from a Trans Perspective 2018

Further Reading

  1. Gynecologic care of the female-to-male transgender man.
  2. Trans men’s Health is a “Women’s Health” Issue: Expanding the Boundaries of Sexual & Reproductive Health Care
  3. Breaking through the binary: Gender explained using continuums
  4. TRANS FACT SHEET – simple language
  5. The Trans PULSE Project is a community-based research (CBR) project that is investigating the impact of social exclusion and discrimination on the health of trans people in Ontario, Canada.
  6. Trans Health Connection Resource Database
  7. Genderpalooza! A Sex & Gender Primer

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