Gender neutral language for endometriosis support organisations

[2020Wumben]

I have just seen an article from an Endometriosis support organisation for support groups to use gender neutral language to be more inclusive of trans men and non-binary people. I get that, if you have gender dysphoria having endometriosis and navigating treatment would be extra distressing and we must do something to help support people dealing with it. But again it is all about the removal of the world woman or female, not changing language to women, trans men and non-binary people.

This is a horrible disease with no cure and ridiculous diagnosis times as it's not taken seriously as a women's condition. It affects so much of affected women's daily lives, chronic pain, infertility etc all because we are women and mostly as we have periods. I appreciate that there have been a handful of men diagnosed with it but 1in10 women are affected. The suggestion of instead of saying "176 million women have the disease" you say "176 million people have the disease", just made me - it wipes out the significance of the number as that statement now includes men.

@TheMadShip I saw that. Absolutely horrific, unfortunately I wasn't surprised. I was incredibly lucky in the my GP is fantastic and a great advocate for her patients but I have heard a lot of women are dismissed-that it's a normal part of being a woman

@FireUnderTheHand thank you for sharing, I am so sorry for what you have went though and that you weren't taken seriously by the people who should have. It's truly awful how women are dismissed as not knowing their own bodies. Your last paragraph sums it up perfectly.

Thank you so much, and my apologies for retracting my thoughtful but insanely long post. Your compassion is appreciated. Because you said the last paragraph was a good summary I will share it below.

I get to claim this, I get to call it a woman's disease, I get to speak about it with words that describe my body. I am an adult human female I do not identify as an adult human female. I did not choose this I did not choose the other things I have suffered and survived due to my female body. I will not be erased.

Fire 💐

Bumping this thread. I saw social media posts from posters in UK and Ireland discussing this and plans to write to Endo organisations regarding moving to gender neutral language. I will write to a few and highlight the importance of being able to use the words woman and female when discussing the disease and it's prevalence in case anybody else was minded to do the same.

Sharing this screenshot from a endometriosis awareness charity asking to stop misinformation which is ironic as according to the post anyone can have endometriosis as the word woman cannot be used.

Doesn't evoke much confidence when the woo word menstruator is spelled wrongly TWICE.

Yea I noticed that too 😂. At least they were consistent and used dog and not bitches 😂

And I read the first part of that 2020wumben and it makes me not feel like it is applicable to me. It feels hugely detached and message does not feel relevant to me. Yet with my history, this is hugely relevant. In the attempt to be inclusive, the main target audience, women, will be not engage with this.

However, it may well appeal to people with dogs. Well done!

Well, I did think ‘bitches’ when I read it. This is a big fail!

Yes I feel the same way, I don't consider that I fall into any of those categories either. I actually can't imagine a non-binary or transman preferring to be referred to as a "menstruator" or "non-menstruator" as the case may be. I'm making jokes but it has really annoyed me at the lack of clarity for a condition where people not knowing what it is and who it affects means average diagnosis times are around 7 years.

I will write to a few and highlight the importance of being able to use the words woman and female when discussing the disease and it's prevalence in case anybody else was minded to do the same.

Emma Barnett (Radio 5 & Newsnight) has Edometriosis and she used a slot on Newsnight to discuss.

I haven't had this awful thing and I'm too old anyway, but I am a woman and I wonder if a really good letter could be drafted and sent to Matt Hancock and the head of NHS England and god knows who else. It really is important to stand up to this. I just can't believe how far the tentacles have wound around women's health.

All of these changes have come about because the trans community is very well organised and got it's act together before we could even blink.

Time to get organised gals

the police announcing that they "stand with asexual people"

Probably just me, but I got an unfortunate image there.

OP, the erasure of women is making my heart ache.

I agree that 'inclusive' language would add more words, not erase 'women'. Why don't women who identify as women get to be included in women's health care?

Which charity is it?

When I'm exhausted and flooding and in agony I know it's because I'm a woman. I knew it when the doctor first told me the pain I was in was because my boyfriend was too rough with me. I knew it when the consultant told me to have a baby to cure it. I know it now when the specialist doesn't listen to me regarding not wanting hormonal treatments and dismisses my well researched views. I wouldn't have all this shit to deal with if I wasn't a WOMAN

@2020Wumben

Sharing this screenshot from a endometriosis awareness charity asking to stop misinformation which is ironic as according to the post anyone can have endometriosis as the word woman cannot be used.

that is an absolutely shocking poster 2020 - (rubbish spelling notwithstanding) I have a number of friends who have suffered - one ended up addicted to prescription painkillers that she was given for so many years before she actually managed to get some proper treatment - another took years to be diagnosed and still suffers horribly. I don't think of myself as a menstruator (not to prove any particular point, I don't enjoy the process of menstruation and when it is not occurring, I prefer not to think about it. My midwives always had a challenge because I had no idea when my last period was for pregnancy tracking because I just don't think about it) so any health poster that mentions menstruators just won't speak to me. There is so much knowledge in advertising/public information about how to communicate effectively with people and referring to women as menstruators (especially spelling it wrong - they can't even be bothered to proof read properly) just doesn't do the job. Are you able to share which charity put this up?

It was endo Ireland. On their insta stories bit. I wrote to Endo UK a while ago and their website still says women on it so hopefully they don't go down the same route.

It's a shit disease and there is a lot of evidence if caught early and excised properly then the side effects such as chronic pain, infertility and problems passing bowel movements etc can be avoided. It takes so long to be diagnosed as a lot of women don't know about it or the symptoms and then when they go to their gp it's dismissed as normal women's issues as they don't know enough about Endo as medical professionals.

It's like the "people with a cervix" thing for cervical cancer. There is no recognition for the inclusiveness of women whose first language isn't English or women who don't know what a menstruator is.

I'm proud to be a woman, all the good and bad that goes with it. It shouldn't be hateful to use the word woman.

@gardenbird48 the ironic thing is that a lot of women with Endo don't have periods as they take contraceptives or have a hysterectomy to manage the side effects.

One of the things that "peak transed" me was when I read that GnRH analogues are used as puberty blockers. I researched this as it was an option offered to me to stop my cycle for 6 months to manage my pain. I read up on all the side effects and basically it's not guaranteed that ovarian function will return to normal so when I saw teenagers being told they were fully reversible I was horrified.

@Airplanes

Which charity is it?

When I'm exhausted and flooding and in agony I know it's because I'm a woman. I knew it when the doctor first told me the pain I was in was because my boyfriend was too rough with me. I knew it when the consultant told me to have a baby to cure it. I know it now when the specialist doesn't listen to me regarding not wanting hormonal treatments and dismisses my well researched views. I wouldn't have all this shit to deal with if I wasn't a WOMAN

I have heard all those things too. It's grim.

I have endo, in march we were women then 2 months ago our local support group brought a mother who does not have endo of a trans child on the board. I asked why we are now people with endo & objected to being called cis in their new info, the mother of trans child posted how she wanted terfs to walk off a cliff on her personal page, totally captured. They did try asking women the group to use inclusive language but no one paid any attention, they still post "Evening ladies" when asking for advise, there is hope.

@Seethefairfromtheair

I have endo, in march we were women then 2 months ago our local support group brought a mother who does not have endo of a trans child on the board. I asked why we are now people with endo & objected to being called cis in their new info, the mother of trans child posted how she wanted terfs to walk off a cliff on her personal page, totally captured. They did try asking women the group to use inclusive language but no one paid any attention, they still post "Evening ladies" when asking for advise, there is hope.

That's hopeful. I'm a member of a private American Facebook group that is quite popular and I have seen a few "hi friEndos" 🙄

It's funny because when I was first diagnosed I a friend of mine introduced me to a friend of hers with endometriosis and we met up to talk, I used to call her my endo friendo but there is nothing about this condition that isn't linked to being a woman

I have had hormonal treatment twice and it really disagreed with me, it's why I look at any doctor dishing out hormones or hormone blockers when people don't actually medically need them and think they are just charlatans.

It's a female condition. Use female language.

So, endo no longer affects 1 in 10 women, but now 1 in 20 people? 5%? No big deal. No need for targeted campaigns, it's a minor issue.