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Endometriosis UK
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TERF ALERT: I've not had a good experience accessing help and support.

My endo and fibroids surgery is in 3 weeks from today, and I am very scared. I am crying a lot at little things no doubt because of this underlying fear and have tried to access the central London support group. However, when I responded to the email that was addressed "Hi Ladies" saying that I don't identify as a lady. I identify as: femme, gender queer, womxn... Any of those. Anyway, I responded stating not all people who get endometriosis on their uterus are ladies. I never heard anything back. This was months ago. I tried joining the central London endometriosis Facebook group over the weekend, and my request no longer says pending and I have been denied access. So, a TERF is (I had to look this up myself a few months ago even though I lecture in feminist and queer theory at some of the top uni's in London... the young people and their acronyms, ammiright?) a TERF is a trans-exclusionary radical feminist. And what an accurate term here. As a queer gender queer you might imagine that I have been excluded from many things in my life, I usually take it on the chin and walk away. But I have never felt so excluded as I have when I am trying to access support for a health condition that we are all going though, are all frightened of, have all had experiences mis-diagnosis and the consequences of the severe lack of funding in women's, womxn's, and feminine non-binary health (all non-binary health, but in this case we are talking about the symbolically femme bits). I got the info for this website and these support groups from the NHS website. If I am not welcome to access this support because I am not a lady, this group has no business outreaching on the NHS website or as a support group in general. So, I am exhausted, the Zoladex is doing me in, I have another jab tomorrow and surgery in 3 weeks. Where does this uterus-having gender queer turn?

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Did you try going on the endometriosis uk site and calling the number? Or filling in the form for the central london support group on there? Theres always support and help and im sure ir wasnt the case that anyone wouldwant to exclude you at all xx i find posting on here a could way to vent and get support/reading other peoples stories

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Yes, I have done all of those things which is why I received the "dear ladies" email in the first place, but thank you for your suggestions.

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Yes OP, was this your fault? Couldn't you just deal with being misgendered? Shouldn't you have ignored all the other trans*/NB/genderqueer people who may be similarly excluded in the future? Could you have been more passive and demure in your language?

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Deleted my comments, which were a genuine (however misguided) attempt to help.

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You're my favourite EvCal :) Yes, I posted because I know there are loads of other uterus having non-ladies out there. xxx and as I'm sure you know, but I'll state it here, as a community of women AND non-binary/gender-queer/trans* people struggling with health issues that can make us feel dysphoric best not to use language that can cause other forms of dysphoria at the same time.

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And Janine33, thank ou for your second email, but just to expand, my email was very short in word length but not rude in anyway in the actual words that I used. I get that sometimes this can be read as short in tone when that's not the intention. Even so, unless someone reaching out is threatening or violent, they should not be excluded when trying to access support for health issues because some days frankly i feel a bit short these days. Illnesses take up a lot of time as I'm sure anyone on here knows, so I don't always have the energy to write long emails.

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If you're looking for support with coping with zoladex and waiting for surgery, lots of people on here have been in the same boat and can sympathise. Maybe post again with any specific questions you have about that so that people know what kind of information/help you're looking for.

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First, I'm looking for where I can join an endometriosis support group that won't misgender me. Or one that will apologise if they do accidentally. That is the help I am asking for. Please?

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As I've said, everyone here is very supportive when discussing drugs/surgery etc. If you make your posts more specific to that then I'm sure everyone will be happy to offer support and share their experiences.

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I have requested specific support that seems not to be the right kind for you so if you have nothing to offer to my request maybe don't reply? Things that would be helpful: I'm so sorry that happened. That sounds awful. (Then suggest a support group that is not trans*/NB/gender-quee-exclusionary if you know of one or offer yourself up as a person who is not exclusionary in those ways as someone who can help and be supportive.)

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Specific support with what? Except of how you classify yourself, no one actually knows what you want support for? Are you struggling with the thought of surgery? Side effects from medicine? On how to deal with endo? You are putting way to much emphasis on gender type which is ridiculous! So lets just say theres plenty of PEOPLE on here going through the same thing that will happily respond to any problems you have and will help you if they can!

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Yeah, I wasn't putting too much emphasis on my gender. Being excluded for it is the thing that put too much emphasis on it. Frankly, you don't seem like you want to help so maybe don't reply if you don't want to help for my request rather than try to tell me to ask for help the way you require. That's not helpful. I have had two trans people contact me since I posted to tell me they have had similar experiences with being excluded from endo support groups. So, I am helping. If you don't want to, stay off my thread.

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sclptrss: This causes tangible damage please show some compassion and just acknowledge us

Heloo85: I just decided something I don't experience actually doesn't cause damage so how dare you ask me to do the bare minimum and show compassion or acknowledge your existence

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Did you not get to speak to anyone on the Endometriosis UK phone helpline? I know you said you received what sounds like an automated email but speaking to someone directly at the charity would be more helpful I would have thought.

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You say in your post 'My endo and fibroids surgery is in 3 weeks from today, and I am very scared. I am crying a lot at little things no doubt because of this underlying fear ...I am exhausted, the Zoladex is doing me in, I have another jab tomorrow and surgery in 3 weeks.'

I feel that if you had left it at that you would have received lots of concerned responses without anyone even thinking about your sexuality (or caring anyway since there really is enough to occupy us with endo that unites us all rather than divides us).

I'm really sorry that you have hit on negative responses elsewhere but 'If I am not welcome to access this support because I am not a lady, this group has no business outreaching on the NHS website or as a support group in general' was not really helpful until you knew whether this was going to be the case.

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I do not have an answer for your question regarding support groups beside the small community that exists on tumblr. But I am frankly appalled by some of the replies on me?!

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Dear all,

We would appreciate it if this conversation is now terminated. Please try to keep discussions centred around endometriosis. If anybody is unable to access one of our support groups, you can use our Helpline. Opening times can be found on our website.

endometriosis-uk.org/get-su...

Alternatively we have our online support group, again, detail of this can be found at our website:

endometriosis-uk.org/online...

All of our support services are led by a team of (very dedicated) volunteers. If you have any issues relating to any of our services, please contact us at supportmanager@endometriosis-uk.org

Best wishes,

Louise

Support Network Manager

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Edit: WROTE THIS BEFORE I SEEN LOUISES' RESPONSE. Please comply with her message. Happy to continue the conversation in a direct message.

Hello!

I am so sorry, you are going through a hard time and feel you are not being supported in a way that you feel entitled to (and anyone should) on this group. So pleased to hear you have had messages of solidarity in the meantime and apologize for not seeing previous messages.

As one of the site moderators, I will glad put forward your suggestions regarding how we address one another on this group. I myself am guilty of using the words 'guys' and 'ladies' way too much. It actually makes me cringe when I write it but I think online it's a way for us to connect in a relaxed way and seem friendly. However, you are completely right that these terms are reductionistic and can end up making people feel excluded, which at some point we can all relate to. It's a horrible feeling for sure.

We should all aim to be progressive and inclusive, especially in communities where very sensitive subjects such as health are being handled. I feel like the responses you feel are 'negative' are coming from a good place though. So out of context from a lot of our lives, your complaint might sound far fetched/trivial/attention seeking. These are not my views but I can imagine that being the thinkings of a person who's not had to think or be affected by these type of gender issues so much.

As a society, we are still far from where we need to be in regards to non-binary/gender-queer/trans rights and how we communicate with one another. I think, to try to bare this in mind and be open to educating at times (I know it's not your job to do this here, but we have to help one another!) and don't let the seeming lack of compassion affect the love you should be giving yourself also pre and post op's. I would love to hear more about any suggestions you have on this and perhaps we can take a look at the community guidelines to ensure a more inclusive means of communicating. I don't think you need to move away from what is usually an awesome community but take it as an opportunity to have some input and help correct any potential f*ck ups.

I sincerely hope this helps a bit and that you're having a good day.

Take care xxx

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I just want to say I am SO sorry for the lack of inclusion and healthcare available to trans folks, in particular regarding gynecological care. It is absolutely abhorrent. A few weeks ago I was thrown out of an endometriosis Facebook group for saying something akin to just posting a message validating the existence of trans people since all the posts focused on "women" and "ladies" which is not only exclusionary but could be upsetting or triggering for some. Getting compassionate healthcare should be a basic human right.

You exist and you are valid. Endometriosis and vaginas are not inherently female and feminine. Fuck TERFs they're absolutely the WORST. Like resorting people to their genitals isn't patriarchal at all... Eye roll*

What I will say is that for basic care, so many have told me that a good midwife is a godsend. Good ones are just trained differently... With an understanding of gender, compassion, consent, sexual violence... So many of them are outspokenly against the use of stirrups, exams without active affirmative consent, and are educated on how to provide care that is sensitive and validating to trans men, nonbinary trans folks, intersex folks... As a survivor I have considered getting my exams and things if (I ever feel I want to) from a trusted midwife and then just seeing a specialist for surgical treatments and the like.

Check out The Feminist Midwife (Facebook and website). She is awesome, and also provides info for how medical providers can improve their gynecological care.

I have been wanting to create a Facebook group for gynecological care and illnesses that is inclusive to trans people because after I was kicked out of that group it was clear there weren't places like that for trans folks, and many people from the group messaged me to say it was heartbreaking to have the post deleted. And the endometriosis Facebook group was an amazing resource for info and self help, as far as the illness itself. Unfortunately, I haven't had any trans folks say they'd like to start the page with me, and as such it feels wrong to do it without that leadership (myself being cisgender). I just wanted there to be a group that used inclusive pronouns and SAW trans people, where everyone could talk about gynecological care and illnesses same as any other group... Just inclusive.

In any case, please don't hesitate to reach out of you need anything or if I can help at all. My name is Harper Kahn on Facebook. I think midwifery may be a good place to start for general compassionate and inclusive care. Please stay strong. You exist! If you want to start a safe Facebook group with me please reach out!

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Hey :) Just been diagnosed recently and so haven't got much experience with the endo community, but I just wanted to say thanks for your post and I hope you're doing better since your surgery.

I identify as non-binary/gender queer and likewise have found all the 'hey ladies' intros very offputting! (If anyone here knows Terry Pratchett it makes me think of Granny Weatherwax shouting 'I'm not a lady, I'm a witch!')

Anyway, just wanted to say that you are not alone, I'm not london-based but if you're ever Manchester way then give me a shout :)

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