Bodysnatchers: The horrors of navigating a broken healthcare system.

P: What are some of your experiences navigating this system?

K: Since the onset of puberty, I’ve had endometriosis, atypical diabetes, chronic pain and macromastia; a pretty awful combination, especially being trans. I’m also autistic. It took me years to be diagnosed or receive any medical treatment for some of these issues, and I’m very lucky that none of these things have done more damage to my body.

I had laparoscopic surgery for endo six years ago, where a cyst was removed and barely any evidence of the disease – despite me being in horrific pain for years – was found. I’m convinced starting the pill in my teens prevented the disease from progressing. But, unfortunately, the pill isn’t a viable option for many. I was told by the ob-gyn to stay on it indefinitely and skip all periods. I’m just waiting in limbo for the day it stops working, and that world-ending, soul-crushing pain returns.

I had breast-reduction surgery in my early 20s, which helped my circulation, nerve pain and mobility. Later, I found out that diabetic neuropathy and nerve damage probably contributed to those issues, because my pain and movement has come leaps and bounds since. Alongside endo, I had horrific sciatic and muscle pain caused by the macromastia. There were times where parts of my feet and legs would go numb or feel like they were being electrocuted. After experiencing it for years, I was finally diagnosed with diabetes. Before I was medicated, I experienced episodes of diabetic shock and so much fatigue that I was unable to work or spend a day without a five-hour nap. As I’m sure anyone with chronic health issues can relate that, regardless of gender, the labels are different but the pain, shame in asking for help, hindrance in our everyday lives or the reactions from sharing our stories, is very much the same.

P: Specifically about endo, how much did you know before experiencing it firsthand? 

K: Growing up, my mother had awful endo and ‘these sorts of problems’ were genetic; affecting all the women in my family. I would wake in the middle of the night to get a drink of water, and she’d be up for hours, hunched over the kitchen counter with some completely useless pain-relief tablets. She’d say something like, “It’s worse than childbirth. At least that ends after a day and you get to go home with a baby. This just keeps going and going and going”.

Early on, I was aware of this insidious ‘feminine’ experience that, even when diagnosed and treated, was still terrible. Thank goodness I had the heads up – kids from single-parent households, or raised by a family member or adoptive parent unaware of the genetic disease, are often in the dark for so long. Even though my mum knew what it was, the nature of endo is that it cannot be diagnosed until investigative surgery is done. I didn’t have the actual diagnosis until I was about 26, but had known for years.

P: What do you wish you’d known about endo before experiencing it?

K: At the time, calling in sick or skipping class felt like the ultimate sin, but looking back at that 13-year old with cold sweats, passing out from endo pain, I wish I could tell them, “It’s okay. Skip maths to go home and lay down, bud”.

I’m not sure there’s anything you can tell a kid to prepare them for the honestly, world-ending level of pain that endo can produce. I wish we were taught about the reproductive system younger, and in a more holistic, genderless and normalised way – so that dealing with it is less of an alien experience for a pubescent child.

I wish I’d known that you don’t just have to ‘work through it’, and that certain levels of extreme pain are definitively unacceptable. Because period pain is so normalised, and the pain gap affects the way people respond to the experiences of POC, children, and other marginalised communities, there’s this mindset to show up and keep going, regardless of what medical emergency is going on in our bodies. There’s also this echo chamber within the healthcare system, where those experiencing pain have their experiences normalised by other people with undiagnosed extreme pain. And it’s not just able-bodied people, it’s all the other poor folks who were told extreme levels of pain and illness were normal who perpetuate this cycle. 

P: How did you go about seeking support or treatment?

K: Like most people, I sought help through GPs, then public waitlists for specialists, or private specialists that I couldn’t really afford.

For endo, I went through the Royal Women’s Hospital for surgery, but was already on a GP-prescribed pill for years. I’ve also sought help for pain through an incredibly helpful chiropractor. I think services like these (physio, osteo and myotherapy, etc) are highly underrated, but hard to afford. At the moment, I try to find any public resource or support that I’m eligible for, that will improve my quality of life.

Sometimes it’s entirely dependent on the attitude and reactions of the individual care provider. I am frequently misnamed and misgendered by providers I’ve seen for years, which I can understand with regards to things like ovarian cysts and endo – but it’s still so dehumanising when some of these providers have written referrals for top surgery. I’ve had GPs suggest alternative ‘contraception methods’, not realising that the entire reason I’m on the pill is for the treatment of my endometriosis.

A great GP is inquisitive, investigative and will open doors to options, treatment and resources. Get one that doesn’t listen and nothing changes, or worse, be told that your symptoms are ‘normal’, ‘just anxiety’ or that you are a hypochondriac. There’s a lack of education and these attitudes prevent access to healthcare and treatments.

The system is also not based on taking preventative measures. Our problems have to become unbearable or irreversible before we’re deemed worthy of a referral or waitlist spot. For example, I paid for my glucometer and other blood sugar monitoring equipment in-full (costs exceeding the hundreds) because I didn’t fit the characteristics for a typical diabetes diagnosis, but was passing out on the daily.

Because I wasn’t over the age of 50 or overweight, I saw about ten GPs before I could get one to recognise my diabetes symptoms, and refer me to a decent endocrinologist. My feeling is, the healthcare system works with numbers and statistics in providing access to diagnoses, scans and tests: if you have a different experience or aren’t presenting in a typical way, you’re more likely to be overlooked.

Seeking initial care can feel like a very expensive, full time job. Bouncing from provider to provider is terrible to finance and enough to make you feel like giving up completely. But, the good work of one doctor can help you access something that might change your life, and you won’t know if you don’t try. For endo, and so many other conditions, there’s so many things we ‘just don’t know’ because of a lack of research. A lot of GPs and even specialists are just ‘trying’ different methods to see what works.

P: How has endo affected your experience of pleasure?

K: Aside from sharp, nerve pains and heavy bleeding, I feel like endo perpetuates a sense of fear, discomfort, anxiety and ambiguity around the most intimate parts of your body. “Why the hell is that happening?” “Where exactly is that pain coming from and what is it caused by?”

Not having a clear mental picture of what the endo, or reproductive parts, look like outside of a 2D medical book makes everything feel elusive and consumed by the disease. I picture a diagram of a Cronenbergian web of flesh over a paper cutout of a uterus: something I wonder if people without endo even consider. After having experienced extreme pain, I guess you definitely value pleasure more.

Sometimes, it's really hard to describe endo to partners that haven’t experienced it, or to explain why it’s such a big deal. It’s definitely affected the way I experience dysphoria in a very specific way. The prospect of pain is something I’m always aware of and am scared will return – so I approach things cautiously. There are times where the physiological memory of the pain makes me feel like I’m still that scared 12-year old experiencing their period for the first time, and all of the feelings that come with it. I have to remind myself that I’m a medicated adult, and that I am safe from the pain, for now. Some things that might be fine for people without endo, can cause pressure and discomfort for those who experience it; like glass sex toys, moon cups, etc. The bloating and heavy bleeding definitely doesn’t make you feel attractive, that’s for sure.

P: Thinking about some of the current approaches and conversations around endo, what would you like to see more of/what’s missing?

K: Our language around endo is so archaic. Even straight cisgender women are furious about the way conversations about endo revolve around fertility options, marriage or “what if your husband wants kids?”; like it’s the 1950s.

I’d like to see endo addressed as an issue for queer and trans people. Especially because procedures, like the transvaginal ultrasound, aren't routine for some queer people who haven’t experienced that sensation before, and because hormone treatment affects the disease in different ways. This approach could be extended to just being respectfully named and gendered in medical spaces.

I want to see more conversations about trauma, chronic pain and how endo doesn’t always occur in a vacuum. I’ve often wondered if my various endocrine issues are linked. Some people experience both polycystic ovary syndrome (PCOS) and endo – or endo and some other supposedly ‘unrelated’ issue.

There’s a lot of medical trauma stuff that’s not addressed – bad pap smears (cervical screenings), colposcopies, laparoscopies. And if most people develop endo during puberty, this isn’t just a ‘women’s issue’, but a children’s issue – affecting kids who grow up to be traumatised adults?

There’s a lot of research and treatment options missing. There’s so much that isn’t researched on a topic that, regardless of our anatomies, kind of affects the entire human race.

I’d like to see more research into the pill and its placement in society as a beneficial medication not just a contraceptive method. And more research outside of the white, financially secure, cisgender experience. I’ve known of a lot of people who fall through the cracks, turned away from getting mammograms, because they are “too young”.