What I learnt about women's health through my own transition
What matters in women's health, and what doesn't
Women's health is neglected and under-researched. We have heard this so often, and it is very obvious to many of us by now. If you have any doubts, just read this, this, this and this. Or even personal accounts like this one. And these are just a few examples.
When I began medically transitioning, I knew that I would have to deal with not just the physical effects of the transition, a shift in risk profile for various diseases, and the fact that trans health is still seen as a very niche issue, but also that as a woman – and as someone who is seen as a woman – I would face the same neglect in case of any future pain or health issues that anyone else seen as a woman typically faces.
Since a lot of issues most spoken about in women's health are related to the reproductive system, they are typically seen as irrelevant for trans women. Although a lot of conversations on women's reproductive health are now becoming more inclusive of the experiences of trans men or nonbinary people who may face the same issues, those conversations are not personally relevant to trans women for obvious reasons.
However, there are indeed other issues related to overall health which are relevant to all bodies where estrogen is the dominant hormone. I learnt this in a very direct way a few months ago, while monitoring my own health.
When I didn’t care much about biology
I didn’t study biology beyond grade 10. Until about 6-7 years ago, I assumed that I didn’t need to care much about biology. I have two doctors in my immediate family, and in general I had grown up trusting doctors. I assumed that they were the experts who would be able to help when something went wrong. I assumed that as long as we took care of our bodies using some common sense, most of the serious issues wouldn’t appear for at least some decades. I knew some basics about how women’s health is generally neglected, but not too many details. So if what you are going to read below seems daunting and complicated and scary, I completely understand because that’s what I would have felt up to a few years ago.
While preparing to start HRT, I realised that I would have to learn much more about my own body and my health. That a lot of things to learn about were related to women’s health in general, and not just for trans women, and they were going to be important in the long term. And as I learnt more and more, I realised that the history of medical science just in the last few decades is full of not just neglect and insufficient research into women’s health, but grave blunders and disasters which affected large numbers of women, but are barely known or talked about now.
I thought I knew enough...
Nearly 5 years into hormone replacement therapy (HRT), I believed that I knew my body and the effects of HRT well enough. I knew since pre-HRT days that my risk of breast cancer and venous thromboembolism (VTE), i.e. the risk of blood clots forming and blocking key veins, among several other diseases, would increase to levels similar to those of cis women. I knew, as almost every trans woman does, about the physical (feminizing) effects that HRT causes. I knew what were the 'safe' doses for the medicines I was taking, how these 'safe' limits change based on surgical status, and experiences of friends on different dosages and different methods of HRT such as pills, injections, patches etc. I had learnt when starting HRT, that I should monitor my liver enzyme levels and potassium levels, as these were most likely to be adversely affected by HRT. I had learnt at some point in HRT about PMS-like effects, and the possibility of lactation – both induced and unexpected.
I don't know about all the differences between estradiol valerate (which is mostly used in HRT for trans women as well as post-menopausal cis women) and ethinyl estradiol (which is mostly used in oral contraceptives), but I know enough about the risks of using ethinyl estradiol in HRT that I would strongly advise any trans woman considering self-medication that either she shouldn't self-medicate, or that she should at least stay away from ethinyl estradiol, which is much cheaper and more widely available because of being a component of most oral contraceptives.
I had also learnt at some point about the sordid history of diethylstilbestrol and the thalidomide scandal, and about other medications like conjugated estrogens which are now not as favoured as bioidentical estrogen.
Images of children known as ‘thalidomide babies’ due to the ‘biggest man-made medical disaster ever’
If all these medicine names seem scary and all this seems like too much information, it seemed so to me as well. But because I had read all of this at some point, because I had consulted an endocrinologist several times, because I did blood tests every few months as I was supposed to, and because I had two doctors in my immediate family as I mentioned earlier, I felt like I was prepared to deal with any unexpected events.
...but then I discovered something unusual
When I had been on HRT for a few months, I had asked my doctor about adding progesterone to my daily medication regimen of estradiol and an anti-androgen. I was told that I didn't need it, because it would counteract estrogen, and because the pace of feminization due to HRT was enough in my case. I never thought much about it after that.
I have got blood tests done every 4-6 months in the 5+ years that I have been on HRT. Besides testing several key parameters, many 'packages' of blood tests available online nowadays also end up reporting several other parameters which one may never have thought much about. This is how I ended up noticing the 'serum copper level' in my blood test reports, something which was never mentioned as a key parameter that I should monitor.
It is supposed to be below 155 micrograms/dL, but for me it was 168.3 in Oct 2019, 183 in Feb 2020, and 209.11 in Feb 2021. I ignored it the first two times as something temporarily outside range which might self-correct later, but when it kept increasing, I decided to look for answers. It was obvious that these high levels, and that too constantly increasing over several tests over a span of 16 months, were harmful.
But... how could I do anything about it until I didn't know its cause? Was there anything in my diet or the water supply that was causing it? No, because this increase had been gradual and persisted despite changes in diet and the type of water supply. Was it because of something in my HRT medication? I checked its ingredients printed on the strip and online for any traces of copper, but that didn't seem to be the cause. Then what was it?
The answer
Finally, I discovered that the cause was not traces of copper in any of the medication, but the main component of that medication – estrogen. I found that estrogen can cause copper toxicity, but also that progesterone can possibly control it.
I did not want to trust an online source without further research, so I kept searching, and then discovered the work of Dr. Jerilynn Prior in establishing that progesterone was as important as estrogen, or probably more important, to women's health. And that it was true not just for cis women, but also for trans women. I got in touch with Dr. Prior and explained my situation, and she advised me to immediately add progesterone to my regimen. She said that besides copper toxicity and a higher risk of blood clots, high estrogen levels not balanced by progesterone could also increase the risk of pituitary prolactinoma and cancers of the breast and colon.
A new mystery
I took her advice, but before starting it, I decided to test my baseline progesterone level. I expected it to be low – similar to the level expected in anyone who doesn't menstruate, and in the follicular phase among those who menstruate. However, it turned out to be high, as high as in the luteal phase of someone who menstruates.
Was it because estrogen and other medications that I take had somehow led to a higher-than-expected progesterone level? Was it because of some hidden condition I had that had never been discovered? I have tried searching for answers but still not found one. Meanwhile, I added progesterone to my regimen, and the serum copper level reduced to 170.4 micrograms/dL in my latest blood test.
What does all this mean, beyond this one example?
I had the ability and resources to look for answers, but what about those who don't? Even among the small subset of trans people who can access medical care, there are very few who can access it on an ongoing basis, who can regularly get blood tests done, and interpret them on their own or with the help of a doctor.
When trans people are still struggling for basic rights and recognition as their true selves, for protection from violence and discrimination, for basic trans-affirming healthcare, when even privileged trans people often struggle to find the right medications and supplies, is it a surprise that these more complex medical questions remain unanswered?
When a lot of people in general – cis or trans – struggle to access basic healthcare or even basic nutrition, is it a surprise that a lot of less visible issues get ignored? However, that does not mean that the more complex-sounding issues shouldn’t be talked about, especially since they do pose a risk. If the particular issue I faced is also a risk for cis women in cases where estrogen is not balanced enough by progesterone, why is it not more widely known?
Is feminization or masculinization the only concern for doctors who treat trans people? Why is the relevance of progesterone for trans people considered only in terms of feminization, and not overall long-term health? If there are other risks for trans people on HRT besides breast cancer, liver damage, VTE, or heart disease (depending on direction of transition), should they not be talked about?
I hear from several friends about their experience with PCOS, dysmenorrhea, endometriosis, menorrhagia etc. Their experiences are harrowing in themselves, and probably a topic for another day, but what is even more disturbing is how common these experiences are, how doctors continue to disregard them or offer very stereotypical views, and the severe lack of research on these conditions.
When I was talking to a friend about my plans for this week's newsletter, and mentioned diethylstilbestrol, she was alarmed and went to check her fridge for some old medicines – which she was given during pregnancy – to check if they contained diethylstilbestrol. Why is the history of diethylstilbestrol and the thalidomide scandal not more widely known?
Are people concerned about women's health only when it is about whether one looks feminine enough, and whether one can give birth? Does the overall long-term health of women not matter?
What would have happened if I hadn't discovered this copper level increase in my blood? Liver damage, kidney damage, brain damage, heart failure, death? How soon could one of these things have happened? And could it happen again for some other reason which I don't know yet?
And was this copper toxicity problem 'something I did to myself', or is it the age old problem that the fluctuation of hormones and its effects on women's bodies are seen as too complex or not worthy of research? Which effectively means that women's health in general is still neglected?
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I have had a on -off relationship with progesterone..I love the mental effects it induces, but am wary of the weight gain..also there is some evidence it can induce diabetes in some cases..(just like some women get diabetic during pregnancy)