Sharing information

[xnanookx]

Hi all,

On Sunday I joined a group I saw advertised on here as a new Facebook group focused on support and advice with very little information as to anything else other than everybody is welcome, then a lady (I won't name name's but if you see this you will know it's you) replied to one of the information sheets I shared and basically forced me to leave the group simple because we chose to have a shared Facebook account, in name only, my partner doesn't use Facebook we have 30 friends whom I keep in contact with via the account who are American/Canadian so we don't see them daily, anyway she made a big thing about not wanting us to be part of the group saying she doesn't want my partner to see ANYTHING she might have to say...

So my question is;

Am I right to feel very upset that I've been made to feel like I don't deserve support simply because of a username I chose?!

This disease destroys relationships am I wrong to include him? Should I shut him out to please other people?

I called the lady small minded and said she was discriminating against couples, which I regret and I do apologize if your reading this that was wrong of me, but you really upset me you made me feel like I shouldn't be part of anything if I have a partner who supports me...

Sorry for the rant

~Kelly.

[applebird]

Excluding you from a group because of a username is crazy! I know a few couples who have joint accounts - the men are rarely on it!!

Aside from that, our partners go through endo too, they have the emotional side, take care of us, attend hospital appointments and quite frankly know more about women's bodies than most men ever will! In a lot of cases men can offer good advice on endo as they have a different perspective. Why should they be excluded on the basis of their sex, you are completely right to be annoyed xx

[xnanookx in reply to applebird]

Thank you Applebird, she said some awful things to me, said we have trust issues or I'd have my own account (it is my account it's just a name...) and she said if I want to include my partner we should stop trying to join groups and use google or book an appointment with a specialist to speak to my partner. I've got lots going on, my due date for the baby I lost is coming up next week, I've my first operation booked for 8th October, pain and depression daily, she gave me panic attacks for 3 days every time I thought about what she said and I have zero support from family/friends other than my partner, nobody understands! I felt isolated before she attacked me xx

[FairFacedFairy in reply to xnanookx]

I'm so sorry to hear you were made to feel that way!! You deserve support and information just as much as anyone else. I always show my partner things because he goes through it just as much as I do.

Please feel free to private message me if you want a chat. I'm a trainee counsellor, so always have an ear open for anyone who wants to talk about their issues

xx

[applebird]

Please don't feel isolated. There is a strong community on here of very kind and knowledgeable women on this forum who can help out - I know it's helped me a lot!

Nobody has the right to make judgements on your relationship or how you decide to use social media. Nobody. As I said partners go through this with us and shouldn't be excluded on the basis of their genitalia!

I've been through a miscarriage myself and know how it can stay with you, all the special dates that should have been and so on - it's very difficult. Also the time coming up to surgery is also very stressful. This is a time you need a lot of support and I'm so sorry this person made you feel worse!

Take care of yourself over the next few weeks and do whatever you need to to relax, here is some advice that helped me feel informed and prepared for surgery

endo-resolved.com/laparosco...

Don't worry about someone being nasty and judgemental, it says more about them than it does you. Concentrate on yourself - your health and your relationship. There are plenty of other forums and groups online and endo UK may have a meeting near you where you can meet some ladies going through the same thing for some support.

endometriosis-uk.org/find-l...

Big hugs & lots of luck for the surgery x

[xnanookx]

Thank you so much girls it's very much appreciated!

Howarth I'm gonna take you up on that offer and PM you later today, I was seeing a counsellor but I only had 6 sessions it was all I was allowed via NHS rules, it really helped me to have an outside opinion it focused my mind and allowed me to voice certain things I hadn't told anybody, it made me realize it's often not as bad as I thought

This morning as I wrote this post I wasn't sure if I'd built it up in my own mind to be worse than it was, we've been together almost 12 years and he still doesn't fully understand, he's trying so hard to be there for me and the last few days he's been so worried about me, I didn't tell him what happened or what upset me. I'm gonna bite the bullet and show him this post and make assurances that I won't clam up again. The only way couples get through this is together! He's gonna be so hurt, he'll think it's down to him

Thanks again girls I feel so much better knowing I wasn't just blowing it out of proportion xx

[Happy_mummy]

Lucky you if your partner supports you and wishes to understand the condition. I would definitely check terms though as there may be something on confidentiality. We all ought to respect each other as the condition is tough and I'm sure the forum would not wish to add stress to anyone's life.

[mstirling]

You did nothing wrong. I would have called her a lot more than small minded if it was me! You shouldn't have left the group if you felt you were getting some support from it. If it isn't her group then she shouldn't make decisions. It's not fair to exclude people based on a username. It's not like you'd be running up to your partner every time someone posted on the group to tell him everything they said! Some people are so rude.

[xnanookx]

Thanks girls, I'm really grateful to you all for replying I was going to request to join the same group again (the other lady left I checked the members) but I'm happy here. You're all so lovely I don't need to be anywhere else. The support I've felt on this forum has been unbelievable! Thank you all again <3 xx

[FTWW_Wales]

I'm so sorry to read this (I know it was a wee while ago now)...We are a FB group for women in Wales with endo. and I know that sometimes groups have to be cautious because of the sensitivities of other members - some ladies don't like to say too much if they think men might be reading - so it is a delicate balancing act. Nevertheless, the group's admin / founder should have kindly and gently explained that to you via a PM, not just removed you or been unpleasant - endo. is horrid enough without you feeling as though you were being attacked.

Hopefully you are feeling better now?