Writing for Jezebel, Katelyn Burns tells an extraordinary story of medical malpractice, litigious surgeons and people whose lives are changed irrevocably by medical mistakes: When Surgeons Fail Their Trans Patients. Warning, it’s pretty graphic in places.

It’s important to note that the vast majority of trans people’s surgeries have positive outcomes: gender reassignment surgery has an exceptionally low regret rate. But there is still regret, usually because of unsatisfactory surgical outcomes, and some surgeons do appear to have significantly higher rates of negative outcomes than others.

This is something that needs to be talked about, but trans people rightly fear discussing such personal things in public.

Burns:

…speaking out after a traumatic experience, in a moment when so few are able to access care, can either be weaponized by anti-trans activists or interpreted by advocates as a step back.

…When she posted about her experience with Dr. Rumer on message boards in an attempt to warn other potential patients, Carlie’s words were reprinted on anti-trans forums.

I haven’t experienced anything like the women in the article have, but nevertheless I’ve chosen not to post some personal things about my own healthcare for that very reason. Discussion forums and Facebook groups for trans people have an ongoing problem with fake accounts mining them for anything they can use against trans people.

…the environment can make it difficult for many trans people to find recourse, or warn others about bad surgical experiences. It’s a system that makes frank public discussion about surgical outcomes nearly impossible to have.

Some anti-trans activists create opposition to access to trans-affirming care by claiming treatments are experimental or too risky to be ethical, another obstacle when patients consider speaking openly about their experiences with individual surgeons. Though regret rates remain low and, and as Dr. Schechter says, “the risks and the complications are commensurate with the risks and complications of other similar procedures,” anti-trans disinformation has become a serious problem in many corners of the media.

Although the article is about the US system, much of it applies to the UK too.

There’s a superb piece in BBC Future about a growing problem in trans healthcare: because systems largely class people on gender rather than assigned sex at birth, trans and non-binary people can encounter significant barriers in getting adequate testing and treatment.

Most healthcare has evolved with a straightforward dichotomy of gender in mind. Though there are thought to be nearly a million transgender people living in the US (this is a rough estimate as this data isn’t collected) there’s concern that this group is being largely ignored by health services and the medical industry.

Rather than devising new ways to cope with changing social norms, transgender people are often shoehorned into inappropriate boxes instead.

There are key differences between transgender and cisgender people, and those differences include the effects of drugs and anaesthetics, what kinds of screening are appropriate, the risks of certain kinds of illnesses and so on. A trans man may respond differently to medication or may produce different test results than a cisgender man or a cisgender woman, but the system is not geared up to reflect that.

Doctors already factor in the importance of tweaking the standard female dosages for pregnant women, who have a higher body weight and are simmering in a cocktail of hormones that change certain aspects of their biology. However, no such considerations are routinely made for transgender people, who, as a result of surgery or hormonal therapies, are known not to respond to certain drugs in the same way.

This is part of a wider problem, which is that medicine takes cisgender men much more seriously than anybody else. As the Independent reported earlier this year:

A 2012 US study found that paramedics were less likely to take severely injured women to an emergency or other trauma centre (49 per cent of women versus 62 per cent of men).

Men reporting irritable bowel syndrome (IBS) symptoms are more often referred for X-rays, women offered lifestyle advice or anxiety medication.

…Women metabolise drugs differently 40 per cent of the time, McGregor writes. Yet 80 per cent of animals used in trials of potential new drugs are young males, and women’s participation in the first crucial phase of clinical trials is even now only 30 per cent. This leads to a situation where, for instance, it took nearly 20 years and thousands of complaints before the medical authorities realised that women only needed half the original recommended dose of the sleep aid Ambien.

More frighteningly, McGregor writes that when drug trials are designed without sex-based criteria, “the different effects of the drugs on men and women often simply cancel one another out”.

Perhaps even more worryingly, women are less likely to be referred for testing if they complain of cardiac symptoms, and more likely to die after a serious heart attack due to a lack of care.

Every single one of my female friends has horror stories of male GPs not taking them seriously and dismissing severe problems as “women’s troubles” best fixed with chocolate and a hot bath. Very many of them have also experienced medical staff taking a “we know your body better than you” stance. The lack of knowledge about women’s health is often shocking.

In a system that often treats women badly it’s hardly surprising that trans and non-binary people also encounter problems.

When you factor in the large data gaps in everything from the average life expectancy of transgender people to the right dosages of medications for their bodies, along with the widespread lack of knowledge among doctors about how to address them – let alone treat them – and the high chance of them being refused treatment outright, it soon becomes clear that transgender medicine is in crisis. Few groups experience such significant barriers to healthcare, and yet their struggles are going largely unnoticed.

The piece makes a really crucial point: for trans people, healthcare focuses on their hormonal and/or medical transition, not what happens afterwards.

That’s not because being trans is new: as the article notes, you could argue that the first documented request for gender reassignment was in around 220AD. In terms of modern medicine, surgical and hormonal transition has been possible since the 1920s and accessible since the 1960s, so we should have lots of data on the medical issues raised by transition and on the health of trans people in their post-transition lives. But we don’t.

if you were to look through every single medical record in the UK – all 55 million – you won’t find a single record labelled as belonging to a transgender person. This is also true for those assembled by many providers in the US.

This data gap is significant, because it means many healthcare providers are operating from a position of relative ignorance. How do we know what medical issues are unique to trans and non-binary people if we don’t even record whether people are trans or non-binary?

In fact, there’s mounting evidence that – as with many other traits, such as race – gender often defies the binary categories and clear thresholds that much of modern medicine has been built on. Transgender people often have distinctive anatomy and physiology, not just compared to the wider population, but to each other – depending on what kind of treatment they have had.