'Being diagnosed with endometriosis showed me that uterus healthcare is a queer issue'

·7-min read
Photo credit: Catherine McQueen - Getty Images
Photo credit: Catherine McQueen - Getty Images

Dealing with conditions such as PCOS, endometriosis or PMDD can be upsetting, painful and throughly discombobulating. Layer on top being queer – much of existing medical literature and resources not making reference to some of the realities of your life – and things can get even harder.

This Pride Month, writer Lois Shearing, author of Bi the Way: The Bisexual Guide to Life, shares how their own endometriosis diagnosis landed the reality that uterus healthcare is a queer issue. Plus, what is being done to crack these conversations open.

'Oh' is not the word you want to hear from a gynaecologist performing an internal ultrasound on you, but I laid still and tried to relax.

'Okay,' she continued, repositioning the screen so I could see it. 'So you can see there’s quite a large growth in your right ovary.' After a few moments of processing, I told her that I wasn’t sure what she was pointing at; that I could only see the shadow taking up most of the screen. 'Yes, that’s it,' she replied.

Three weeks later I had surgery to remove what turned out to be an 8cm endometrioma – a type of cyst caused by endometrial tissue that grows on the ovaries – and was diagnosed with endometriosis.

After the cyst was discovered, I turned to the websites of endometriosis charities for more information.Whilst I found valuable knowledge and resources, it was also a reminder of how heavily gendered all the information around endometriosis is.

As a genderqueer person, I conceptualise my gender as moving between woman, agender, and masc, and I use a combination of 'they' and 'she' pronouns to represent this. Other genderqueer people use the term to mean a whole host of things, including identifying as none, all, or a combination of genders. So it felt alienating to wade through page after page referring to endometriosis and uteruses as only belonging to those who identify exclusively as women.

'Agender' refers to someone identifying as not having a gender. Masc refers to a person whose gender is masculine

I also found myself having to navigate the assumption that protecting my fertility would be not only a concern but my main priority. Like many other people with reproductive diseases, I raised the possibility of having a hysterectomy – but was told that this is a very permanent procedure and I might change my mind about wanting children the traditional way in the future.

In the lead up to my surgery, my gynaecologist ‘reassured’ me several times that she’d do her best to save my ovary to help protect my fertility, (and to her credit, she did) despite me telling her that this was unimportant for me. Whilst fertility is a main priority for lots of people seeking endometriosis treatments, the assumption that anyone perceived as a woman would place it above other outcomes such as living as pain-free as possible, is steeped in misogyny and heteronormativity.

More people than ever before now identify as LGBTQIA+ in the UK. The latest ONS report found that 2.5% of females now identify as gay, lesbian, or bisexual (the ONS breaks down its categories into two sexes, but does not provide details as to whether participants are also asked about gender identity). Figures for the number of trans people in the UK are hard to come by, but a recent study from the USA found that the number of young people identifying as trans has nearly doubled in the last three years.

As well as being a women’s health issue, uterus healthcare and justice is also a queer issue. Not only do queer people have different uterus healthcare needs than cisgender heterosexual people, such as different sexual health needs or access to fertility treatments, we also face unique barriers when attempting to access reproductive healthcare.

This has been acknowledged by some members of the medical establishment. 'We are aware of significant health inequalities and specific barriers to services and support experienced by lesbian/gay, bisexual, transgender, queer and questioning and the LGBTQ+ community. This can occur directly through lack of knowledge and understanding and indirectly through marginalisation and social isolation,' writes London Gynaecology, a private gynaecology practice.

This marginalisation can have very real consequences. In 2018, LGBTQ+ charity Stonewall found that 14% of LGBT people avoid seeking healthcare due to fear of discrimination, with 13% reporting experiencing unequal treatment due to being queer.

One example is unequal access to fertility treatments for same-sex couples. '[Queer people] face a multitude of barriers and implications on our paths to parenthood through fertility treatment, from lack of access to funding, financing treatment, and laws not protecting us to inequalities in the access to treatment we require,' explains Laura-Rose Thorogood, founder of LGBT Mummies, an organisation which supports LGBT+ people on the path to parenthood.

Another is lack of understanding around queer menopause experiences. 'Menopause has traditionally been seen as something that happens exclusively to cisgender heterosexual (white) women in middle age. However, there is so much more to it when seen through a queer lens,' explains Tania Glyde, a co-founder of the Queer Menopause Collective.

'Trans men and non-binary people experience menopause; someone might experience menopause at any age should they cease to have ovaries; and changes in hormone levels can bring on menopause-like side effects in anyone, whether they were born with ovaries or testes. Intersex people's experiences are often erased due to entrenched binary thinking.'

Tania believes that lack of understanding around different menopause experiences has left a gap in the healthcare provided to queer people due to lack of training and understanding medicine creating worse health outcomes. 'Having to explain [their unique needs] to practitioners who may be homophobic, biphobic or transphobic is often a bridge too far, and people end up not accessing the care and support they need,' they explain.

There has been a lot of backlash to the calls to make uterus healthcare more inclusive of diverse genders and queer identities, especially given the rise in transphobia over the few years. But acknowledging that it isn’t just women who have periods or need smear tests does not erase women’s experiences, it includes more people in the fight for better healthcare.

So, what could that look like? Initiatives such training medical staff in a more inclusive way, covering both LGBTQIA+ healthcare needs and how to interact with queer patients could have a huge impact on reducing our health outcomes. Recently, a transmasculine friend had a doctor comment that she’d ‘never done a smear test on someone with a beard before’, making an already awkward experience even more uncomfortable.

Comments like these can deter queer and trans people from getting medical care in the future. Resources for LGBTQIA+ people, such as the pages recently launched on the NHS website, are also a useful way of making healthcare more accessible.

It’s now been almost a year since my surgery, and I’m adjusting to the knowledge that I have a lifelong disability. There are still days when I’m in too much pain to get out of bed, but knowing why, now that I have a diagnosis, has been a huge relief.

I’ve also had to trial several different hormone treatments to help with the symptoms, and the trans women in my life have been a source of support, knowledge, and comfort as I try to find a programme of oestrogen and progesterone which suits me.

Since my surgery and diagnosis, I’ve created the podcast Ovary-zee to raise awareness of uterus healthcare and justice. In each episode, I ask my interviewee what they wish the healthcare system or public, in general, knew about their topic, and as the first season wraps I have been struck by how everyone seems to give the same answer: 'listen toour unique needs and experiences.'

Because while the majority of people accessing uterus healthcare are cis, heterosexual women, more and more of us aren’t. And, in the current system, we're getting left behind.

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