Lived Experience Forum

[Dimity]

The Victorian government is investigating how women experiencing pain are supported by the health care system.

They are running an online questionnaire. 

You can access the questionnaire at  https://engage.vic.gov.au/inquiry-into-womens-pain-survey

I've reported my experiences and my opinion that mental health stigma has influenced the way things unfolded for me.

I'd encourage participation in the survey. It may have been designed with endometriosis in mind but it's an opportunity to give feedback on broader issues.

[D1ng0]

TW: Healthcare mistreatment, denial of medical support, mention of suicidal ideation. 

My experience with endometriosis and reproductive healthcare was fine while I was living as a woman, but transitioning made those issues impossible to seek help for, as the healthcare system didn't give a damn once I was no longer self-labelling as a woman. Being a trans man with those kinds of health issues is extremely difficult. I faced humiliation, aggression, and physical deterioration at the hands of healthcare workers, because of this. I was even driven to suicidal intent.

If the government genuinely cares about the pain, reproductive autonomy, and healthcare barriers faced by all people who were assigned female at birth, the language of this inquiry won't invite those insights. They have written that they are referring to trans men and non-binary people when they say "women" and "girls", which is very lazy. That's not what inclusion looks like. "We're calling you a woman, just ignore it and give us your data," is not inclusive. That's the same laziness we encounter every single time we try to access reproductive healthcare in purported women-only spaces, where many of us experience denial of healthcare (which is a human right) based on our trans status. We don't choose to be trans, and we don't choose to have health issues.

If this is an inquiry just about women, then fine. That's worthwhile in itself, and the inquiry organisers should've stuck to that focus. If this is supposed to be broader than that, focussing on sex discrimination experienced by many of us, it should be written differently.

Just to be fully clear here, inquiries supporting and focussing on women are very important. But if this is supposed to be broader than that, that should be shown through appropriate language. I was born female and I am an afterthought in this inquiry. I'm not going to engage with a government inquiry just to have my data labelled as a woman's experience.

[Dimity]

Hello @D1ng0 

From what I remember of the questions yours is definitely a voice the enquiry wants to hear.

Language and labelling are absolutely fraught especially with ongoing culture wars. But for people who weren't born with male gon*ds being recognised and heard when it comes to serious issues associated with having female gon*ds together with acknowledgement of intersectionality can't be taken for granted. In the SANE community we have the additional complication of stigma resulting from having a mental health diagnosis. 

@tyme 

[tyme]

Thank you for sharing @Dimity 

[D1ng0]

@Dimity Then the inquiry should be called something else.

I absolutely agree that people with female reproductive systems need specific support, because I was born one of those people. This inquiry is not doing that. It's an inquiry into women's pain, and they specifically state that they are viewing trans men and AFAB non-binary people as women.

It's not about culture wars. It's got nothing to do with political correctness, or whatever. It's about gender dysphoria and the immense distress that people like myself experience when we are labelled as women, and the systems which cause us harm when we try to access healthcare. This inquiry is just an extension of that. It is not intersectional to say, "this inquiry is about women," then tell dysphoric trans people who are not women, "we're calling you women as well. Deal with it, we're being intersectional". That's exactly the same attitude which causes our trauma in the first place. That is not intersectionality.

I will never again be generous with describing my experiences, trauma, and mental illness to government bodies which just want to label me as a woman. I have had to fill out too many surveys, questionnaires, and confidentiality forms that called me a woman. The idea that I should be grateful for this inquiry, and put up with being called a woman once again, is awful. And the reason I responded in this thread is because this inquiry brings all of my trauma back.

Edit: I wish they'd called this inquiry something along the lines of, "Experiences of pain with female reproductive systems". That includes endosex cis women with such anatomy, trans men, a percentage of non-binary people, and even certain intersex people (of any gender) who have variations of female anatomy. If the inquiry organisers actually want inclusive sex-based data, they should've focussed on that, rather than titling the damn thing, "inquiry into women's pain".

If they instead wanted to focus on all women irrespective of sex, they should've limited it appropriately.

[Dimity]

My apologies. Thanks for explaining why it's so troubling @D1ng0 . I only saw the opportunity to perhaps counter aspects of an at times deeply patriarchal misogynist and discriminatory medical system that has demonstrably belittled and ignored the pain and trauma of so many, that has had a history of regarding more than half the population as hysterical or untrustworthy witnesses of their own bodies, and systematically excluded them from pharmaceutical trials... with a doubling down on people already disadvantaged by other accidents of birth or conditions outside their control. I've suffered too.

I can only hope that some good will come from this enquiry.  Already some endometriosis clinics are being established. I trust you'll reap some of the benefits even if you see yourself as collateral damage.

My personal difficulties mean these issues are very close to the bone, and I've been upset by the struggle to raise this at all.

@tyme @moderator 

[tyme]

Hi there @Dimity @D1ng0 ,

I'm hearing how this is a topic close to your hearts. I recognise the feelings it brings up for each of you.

We want you to know you are both heard.

If you would like to discuss this further, please reach out to us at team@saneforums.org

[Minerva]

@Dimity 

Oh my, the whole Endometriosis pain has been a battle of mine since 2015. As my flare ups increased and increased in line with onset of PTSD and “life” , I am blessed and grateful for a bizarre connection I discovered (and yes this apparent tangential leap is in line with ADHD)….. when I broke my leg in 5 places and smashed my foot (2019) I was placed on a long term painkiller for about 8minths. During that time I did not have any Endometriosis pain….this pain medication did not have the side effects of the Endone I was given for Endo.

i also am grateful that my GP advocated for the ongoing management of my ENdo with this pain medication as I did not have one “flare up” whilst on this pain medication. 

I am grateful that I now have access to treatment which helps . And yet I still get caught unawares and if I need “an extra amount” it often feels as though the barriers in place make no sense🤷‍♀️

[Dimity]

Glad you found something that helped @Minerva . Hope your leg mended OK.

The enquiry asks about the pain, what helps and what barriers you've encountered. Even getting a diagnosis is hard for some.

Don't knock yourself re ADHD - some say neurodivergence is a superpower. In my book we're all welcome just as we are.